TILL THE SHORT BUS

Never Forget 9.11

2011-09-11T20:17:00.004-04:00

Cried just as hard today, 10 years laters, as I did the day it happened. Watching all the news coverage was heart wrenching. Tried to explain it to MM. Our babies will never have the innocence we had before that day.

LOVE & PEACE for USA

It's a Grand Old Flag

PLEASE GO VOTE FOR ME!!!

2011-09-10T19:29:00.002-04:00

I really could use this gift card! All my bloggie buddies... I am the bonus choice of number six. Here is the link to the site

http://mamapundit.com/2011/09/time-to-vote-best-schoolday-mornings-idea/

Thanks, thanks, thanks!

Meghatronsmom

My Heart's Labor Day

2011-09-05T20:28:00.009-04:00

Today, September 5, 2011 is a day that will be etched in my heart forever.

MM has developed a new fixation/obsession of collecting business cards & pamphlets from wherever we go. She reads the pamphlets, memorizing every detail of them. She then parrots the facts out to you & quizzes you several times throughout the day.

She got the pamphlet from her therapy place last Thursday. She has been reading it over & over, but oddly not one inquiry has come from her about that flyer. Not one until this evening.

It started when she was in the shower. She starts saying "I do not have artism" (artism is how she says autism). She often says this whenever she happens to sneak a peak at a report or hears me in a discussion. Again, "I do not have artism, I go to **certain therapy center**". I say, "Yes, you do go to **certain therapy center** and you do have autism". Then the conversation goes from her usual scripts/quizzes or even an argument of not having artism to this:

MM: What is artism?
Me: It is a brain disorder that affects how you see the world, how you feel & sense the world, how you interact & how you socialize and talk with people.
MM: Was I born with artism?
Me: :::long pause cause I still am not totally sure how to navigate this:::: Yes you were
MM: It is a brain disorder that I was born with
Me: Yes
MM: Do you have artism?
Me: No
MM: Does Daddy have artism?
Me: No.

She then jumps to another topic.

MM: Do I have cerebral palsy?
Me: Yes
MM: What is cerebral palsy?
Me: It is a condition that affects your muscles caused by lack of oxygen to your brain either when you were born or when you were in mommy's tummy
MM: You were pregnant and gave birth to me
Me: Yes
MM: Why didn't my brain get enough oxygen?
Me: They don't know for sure. Mommy was very sick & you were born early.
MM: My brain has enough oxygen now. I got cerebral palsy cause you took Zoloft (thanks lawyer commercials)
Me: LOL, no I didn't take Zoloft and yes, your brain has enough oxygen now. You know your friend H? She has cerebral palsy too. She didn't get enough oxygen cause when she was in her mommy's tummy her mommy had a bad car accident. You have mild cerebral palsy, she has severe cerebral palsy.
MM: Mine is mild, H is severe.
Me: Yes. That is why you were DAFOs & why you go to therapy. You have all these wonderful people to help you get strong & do all the things you can do. But your cerebral palsy is what makes it hard for you to write, snap & unsnap, zip, put on clothes, walk long distances.
MM: I can run fast.
Me: Yes, honey you can, the fastest. You can do anything you want to do, just sometimes you need a little more help.

MM: You have asthma.
Me: Yes.
MM: Were you born with asthma?
Me: Yes.
MM: Will I always have artism & cerebral palsy?
Me: :::swallowing lump & keeping the tears from creeping up:::: Yes.

By this time, we are done getting her dressed. She jumps up off the bed and starts in her typical language stimming voice "I have artism & cerebral palsy. It is mild. I have mild cerebral palsy. My brain didn't get oxygen" and then she continues to repeat it for the next 10 minutes until Wheel of Fortune comes on.

God bless her. She some how had a real conversation about it. I don't know if she fully understands it, but I think she does. I was totally caught off guard & not ready. I tried to be matter of fact and honest. I somehow got through it & didn't cry. Till now. That break in my heart just tore right back open, just as fresh as the days I found out about each of her diagnoses.

It just feels wrong having to explain brain injury & brain disorder to your eight year old, especially when it's hers.

Those Dreaded 3 Letters

2011-02-06T06:49:00.002-05:00

Yes.
I can't believe it. Time sure has flown by. It's been a year already.

I.

E.

P.

Trying my best not to stress. Haven't spent days & days preparing like I've done in the past. I'm hoping my reverse strategy works & that I come out with more since I went in with way less. Will let you know if my plan backfires.

To all those who are getting IPADS for their children for school use, I am sooooooo green with envy! I can only dream....

New Year New ?????

2011-01-01T08:01:00.004-05:00

Well, I posted in September about all that I was going to do with the blog, etc.

I obviously haven't done it. I haven't done much of anything really. Head in the sand, trying to get by, day to day living.

We are here. We have good days & bad days. We go through patches that are much rougher than others.

We've had quite a bit of illness lately. The delicious clarity after illness often carries me through the sickness. I loathe when she gets sick, but enjoy the time after. I wish they could figure out what causes it & bottle it. I know my child is special & amazing. When she is "here" it is icing on the cake. I wish you could really see the difference. Those who have experienced it understand. A glimpse of my girl without autism.

We go see the specialist this week. We are very concerned about her CP. I know CP doesn't get worse. However, she has grown six inches this last year. She keeps falling lately. I am hoping its an inner ear infection, off balance & its been bitterly cold outside thing, but I am afraid. She has always been one to want to walk everywhere until exhaustion. She is now relying more on her wheelchair when we are out. I worry that her cords are getting tighter. I am glad we have the appointment coming up sooner than later. I hate worrying needlessly. I always feel like I am sitting waiting for the proverbial shoe to drop.

IEP time is coming. IEP time is coming. AND surpise!!! they didn't do several things listed. I am so disillusioned with the school & the state. I filed that complaint & they rushed to put a bandaid on the six inch gas. State felt the bandaid was good enough. We are still bleeding all around it, but hey, they DID put a bandage on it! ARGH!!! Will let you know what happens there.

Hope you all have a happy new year & that if you make resolutions, you are able to keep them.

Blog Roll & Hop

2010-09-02T04:00:00.000-04:00

Thanks to blogging, I have "met" some pretty incredible parents with some super awesome kiddos. I have also "met" some pretty incredible people.

I am in the process of sprucing up the ol' short bus here (since it is back to school time and all) and I have noticed lots of things that need fixed. I changed the background cause my other one was no longer good. I am not loving this new background. I need to figure out how to make my own. My pics & links that scroll are not all showing up. I need to redo those.

Now, my poor bloggy roll! So many of the blogs I have on there haven't posted in 8 months or more! I have several new bloggy buddies who I check out & would LOVE to add to my list. If you are one of them, please give me a shout out in the comments. I will add them. This also gives me a better way of keeping up and ability to drop by to show some bloggy love! I think I might divide up my bloggy roll into different categories. I have so many that are fellow parenting bloggers & not just all SN. What do you think?

Are any of you experienced at redesigning blogs? Do I need to get someone to do it for me? I am not super fancy, nor am I super popular. I do want it to look nice & improve it. THANKS!

And in the spirit of the sprucing up, I am trying a few new things to maybe get my blog moving even more. I joined this thing called a Blog Hop. I have never heard of this until I saw it on one of the blogs I frequent.

So, now I am a member of Autism Blog Hop.

Shaky Start, but Ooooo I Feel Lucky Today!!!

2010-08-27T08:14:00.001-04:00

Well, per usual, our local school district (lsd--- just like a bad drug LOL) did not fail to disappoint.

Right out of the gate, no bus. The lsd got lucky cause the first day of school, I had to work. They dealt with the hubs. They tried to tell him "if it makes you feel any better, the sped** buses didn't come for about 12 of the kids here". Ummmm, NO!!!! That means that the parents who have enough to worry about sending their children with handicaps off to school had no busing! Sheesh.... so NOT okay. The hubs called & left a message with transportation. The next day, still no bus. They had to deal with me. Ut-oh!!! Mrs.I-know-our-rights-and-am-not-afraid-to-quote-them-or-go-over-your-head-and-won't-take-no-as-an-acceptable-answer-when-it's-on-the-IEP.

Yep, the b!tch is back.

Upon dropping her off at school, I met with the vice principal. She said it was a district thing, not at the school level. I went home and called the person in charge of transportation for special education. I called & called & called. I kept getting VM! Frustrating! I am going to make this long story short, for I spent hours chasing this down. I chewed out the lady who is in charge (but claims she is not), then talked to her supervisor and continued on up the chain. Upon all the calls & investigating, I found out the bus owner did ask why MM wasn't on the list! They claimed they had no paper work. WHATEV!!! The lady in charge was quite rude (hence the butt chewing from me. If you are rude to me, I push back---- HARD! If she hadn't been rude, I might have been content to wait it out for the week. I would have asked for transportation reimbursement, but I could have waited it out) and tried to claim it was a fluke. Not believing that for: 1.) She has been riding special transportation to this school for 3 years, this makes year 4. 2.) The bus owner asked why she wasn't on the list. 3.) This happened with kindergarten!!!! It was a large amount of finger pointing & blame shifting, just like our good bureaucratic system does at its finest.

Needless to say, the bus showed up on day three. Hee hee.... LSD 0 MM 1

As I have mentioned before, MM often has troubles with lunch at school. She doesn't always eat. She also doesn't drink sometimes. Not drinking is very bad as we all know, special needs or not. It is not good for a person to go 8 hours without drinking! We have it written on her IEP that she can drink when she wants. She is very prone to UTIs due to her CP issues & the autoimmune stuff. We are approaching the end of week two. I have been diligently documenting what she does or does not eat or drink from her lunch (long story on this cause the principal claims that they make sure all the children eat and drink when at school~ all except MY child). She has not been drinking ANYTHING from her lunch box. I have asked if she is drinking something else. I never get a clear answer, but I am guessing not because she is parched when she gets home & drinks like a fish. She came out of PT today & they asked if she was getting a UTI cause she kept holding herself. I didn't tell them about her not drinking, they know her & pick up on her cues quite well. After talking to my mom (who got her off the bus), she said she went to the bathroom 5 times in the 30minutes of being home from school. UGH!!! SO, after today, I will have almost two weeks of documentation to back up my concerns. I will meet with the teacher, the school nurse & the principal to get this resolved. WHY oh WHY does common sense elude these people????

MM does appear to be enjoying school so far. The work is quite easy for her so far. They do have her Neo & she is using it. The teacher has sent me quite a few notes as well as some emails. She says she loves having MM cause she is super smart & sweet! She is also behaving quite well.

I have had a week of ups & downs. One of the coolest ups, hence the lucky today, is that I actually won a really cool prize on Ellen's blog! I am super excited to get it! This was the first time I have one a major award and can't wait to receive my fragile package! (lol...Christmas Story reference). Go show Ellen, Sabrina & Super Purple Max some bloggy love! THANKS ELLEN! You are an amazing writer with some great kiddos & some cool give aways!

**"professional" people referring to it as SPED when talking to a parent is a whole other issue!!! I find it to be derogatory & will bring this up to the principal as well ! ARgh!

Back to School

2010-08-14T20:11:00.003-04:00

Every where we look, we are inundated with back to school stuff. Advertisements on TV. Advertisements in the paper & online. Displays as soon as you enter the store.

Most parents are excited about the words back to school. The children have been fighting all summer. The children are bored. The parents are ready to send them off so they can relax, get their house back in order and do all the things that are hard to do with children around.

Not me.

MM starts school on Tuesday. I have a huge knot in my stomach. It is keeping me up at night with anxiety. Will this year be better? Will I have to fight as much? Will they follow the IEP? Will she eat while at school? Will she use the bathroom so she doesn't get sick? Will her meltdowns be as bad as they usually are when she starts back to school? Will she make any gains after doing so well this summer? Will the bus driver work out? Will she be able to keep up with her peers? Is this the year the kids start making fun of her or are mean to her?

Don't get me wrong, I am looking forward to getting a break. It will be nice to have most of my days off to do the things I need to without her in tow. She has also had a great summer (up until the last few weeks which I am sure is HER anxiety about the change coming up) and I have enjoyed working with her, helping her make some real gains.

BUT, I am not looking forward to all the BS of school that goes along with having a SNK.

To end on a good note, we met her teacher the other day. I am excited cause I think we might have a great fit. She has been a teacher for a long time and has spent the majority of her time in special education. She has taught a typical classroom for the last 4 years, with a Sp. Ed. child in the room each year. XXXXfingers crossedXXXX that this is MM's year!

Cheer Up...

2010-08-10T16:28:00.008-04:00

In the last year, my biological father has gotten in contact with me.

He was MIA for over 20 years. He then got in contact with my older sister. She clearly remembers him, she was three when my mother & he split up. They were already separated when I was born, got back together & then went their own way. I met him back then, about 15 years ago. It was very awkward for me. I already have a dad and this person appeared for a weekend & expected to be as such. I never spoke with him again after that. My sister has maintained contact with him and developed a relationship. The relationship between my sister & I is often tenuous. We didn't talk for a long time as adults. We have reconciled & I try my best with her. However, I feel she compartmentalized her relationship with our biological father from me.

When MM was born, she and I were not talking. (That is a whole other story to be hashed out some other time) MM was a secret from the biological father for a long time. I didn't have any relationship with him. I also didn't feel it was important. When my nephew was born, I guess he assumed it was his first grandchild. Things were fine by me. My sister continued to feel a need to keep her a secret. I could care less either way.

Then along came F.ace.B.ook.

Being friends with my sister, she friended his two daughters (yes, I know they are my half sisters, but I need baby steps with this...) & his current wife. They could see posts & pics (I wasn't savy on how to make things private like I am now). She asked if I cared if they friended me. I didn't mind. My biological father also friended me. Fine. He then found out about MM, that she existed, his FIRST grandchild. Still fine.

I have tried my best to foster a relationship with him. I don't really think it is a familial one, but it is semi cordial. I feel like the more people in MM's life that know her & love her, the better off she will be. He has sent her two packages, I sent a few pics. I occasionally chat online with him & sent a few texts. I have put forth the effort and feel I have done all I can. The ball is in his court if he wants more, but I am not reaching out any more. He was the one who pursued me. I don't feel like I have a void in my life.

All this history leads up to the following:

My sister told him about MM's disabilities when he first found out about her. Things have been said or done that really rub me the wrong way. I know people mean well, but the best of intentions...

I posted about having a bad day yesterday & feeling bad. He texted me to ask how I was doing (btw, I have not heard from him in over a month). I just said I was tired & life was kicking my butt right now (have had several trying ASD days in a row). He txtd back "cheer up, I have days and weeks like that".

OOOOkkkkkkkkkkkkaaaaaaaaaaaaaaaayyyyyyyyy.

That just pi$$ed me off to the hilt. YOU do NOT have days like this or weeks. YOU had four healthy daughters, two of whom you ignored for years. YOU don't know what it's like to be exhausted from ticks, meltdowns, the constant needs of self help, having a 7 year old functioning like a 3.5 year old,worrying about paying medical bills, going to therapy, making sure you are doing enough for her, fretting about IEPs, fighting the school, the constant stares in public, the mental & emotional beat down etc, etc. YOU don't know how hard it is to walk around with your heartbroken cause you can't fix or stop what is going on. It will not change. It will not go away. You have never seen her, spent 1 minute with her, let alone a day.

So, sorry if I don't cheer up immediately. I think I am entitled to a pity party every now & then. They don't come as often as they used to, but they do come, especially on super trying days like the last few have been. If you really knew about our life & really wanted to be involved in a true grandparent role, then you would know. I am sure you meant well, but no.

No.

NO.

You do NOT have days like this. You NEVER will.

Summer time and the livin's easy...

2010-07-15T17:04:00.002-04:00

Well, not really. BUT it is being good to us.

MM is doing well at home. She has made a few subtle gains. I am very excited about this. Any gain is a good one. We have been stagnated for so long, that I am doing the happy dance about them.

She is only doing two days at a summer program, one day with therapy and one day with her baton lessons. Otherwise, mom & I are working with her. What. a. difference! Her behavior has been quite good, ticks/stims way less and just an overall sweetie. I see her little personality peeking out through the ASD and she has a wonderful sense of humor. She has even made some jokes.

After talking to my friend (who is a special ed teacher), she said maybe the school day is too long for her. I am wondering if she is right. I have the girls at therapy documenting her behaviors, gains, etc during summer break. Once school starts & we see how things go, I might consider decreasing her day. If she is not making any gains because the day is too long (too much going on, too many interactions, etc), then I might shorten it.

We haven't really done much else. Life has been kind of boring, but boring is good. I have been slack on the blogging/being a blog buddy front. I guess I have been on a blog break. I said it before, I have a bunch of posts started. I'm just not sure I want to finish or publish them. They came from when I was in a dark place. I am back in the light now. Depression is such a miserable thing. Hiding it is even harder & worse.

Love & light to all of you. I'll be back to commenting before you know it!

Life gets in the way

2010-06-10T07:55:00.002-04:00

We are here, much to blog about, don't really feel like it.
Just know we are around. Will get to this eventually. I miss you all & need to catch up on your blogs for I am sorely behind.

Please Pray

2010-04-28T14:42:00.001-04:00

One of my BLOGS I READ is in need of some serious prayers. Let's all storm heaven for her, okay? Thanks so much!

Scattered

2010-04-05T14:37:00.003-04:00

Have lots of posts started, none completed.

Went on a mini road trip this weekend. Very stressful, but made it there & back.

Still fighting with the school.

Got the wheelchair last Wednesday. She is a pro at it already. I know DH hates it, but it is such huge help already. He will come around eventually.

We've all had colds again too.

Computer crashed, had to totally clear the thing & start fresh. Those viruses suck.

Work is HORRIBLE! I want to quit so bad, but can't afford it. I am on the look out for a new job.

Been a bad bloggy friend, but will get back on the horse.

It's Autism Awareness Month.

That is all.

The Exhaustion

2010-03-12T14:35:00.011-05:00

I am so tired of fighting everything. It really gets old. I didn't realize that when you become a SNK mom you also have to turn into a prize fighter.

The whole school thing is really wearing on me. I talked to the lady at the state BOE yesterday. I am not too convinced that they will do the right thing. She was attempting to tell me that they didn't have to do certain things. That sent up huge red flags & set off alarm bells in my brain. It is CRAP! They are not above the federal law. I am just going to try to relax a bit & wait until I hear more from them. They were supposed to call today & so far, at 2:30PM no call. Again, not very convincing. I am mentally preparing myself to retain the attorney and go to due process. I am not sure mediation can help these yahoos. Ding-Ding Round 2

Insurance. What more is there to say? Can't live without it if you have medical issues, going broke paying for it. Now, my latest fight is with our dental insurance. Even worse, it is from almost a year ago that I am just finding out about this. Things they say they pay for they are denying. I was slightly embarrassed when we got to the dentist this morning & was told we had an outstanding balance. On the dentists behalf, they never sent me the bill. I would know if it did cause that is the only dental claim I made last year. WTH? (shame on me for not getting myself to the dentist) I am also still trying to get Ci.gna to pay for some stuff from my hospitalization too. Ding-Ding Round 3

Other things wearing me down:

My stupid job. Don't get me wrong, I love what I do. I am just sick of all the other BS. Just let me do my job & take care of the patients. Stop inundating me with all the extra junk you expect us to do. Also, don't tell me every little thing I do wrong & never tell me what I do right. I have taught MM to say Upper Managment Stinks. That makes me smile.

My rotten sinuses are requiring another surgery. Yep. Last one didn't take. This one is way more risky & kind of my last hope. Not too happy & haven't even scheduled it cause I don't want to deal right now. This also is not the ideal time of year for me since allergy season is about to kick in (hopefully, come on Spring).

MM needs to be sedated & intubated for a dental procedure. Her baby teeth aren't falling out & the permanent teeth are coming in like crazy. I believe he said 4 teeth will have to be pulled, possibly more. She will also get her xrays & teeth cleaned then too cause she wouldn't let them in her mouth AT ALL today. Well, she wouldn't let the yahoo hygienist clean her teeth. The girl was really a butt & it is a pediatric office! I just don't want to go into the way she acted, but I was actually glad my kid has a huge gag reflex & throws up at the drop of a dime. TWICE on her! LOL Serves her right for not listening & being inpatient with a child. Needing to go to the hospital for dental procedure = more insurance fights!

Like everyone else, all the doctor appointments come up at once. We have had 4 appointments this week alone. Bye-bye any extra cash we had!

Now, to end things on a good note:
I have started clipping coupons like mad. I have saved over $200 that last few weeks. There are some really cool websites out there to help you.

I have found a really nice community resource I wasn't aware of. It is an olympic sized indoor pool & the price for a membership is super, duper affordable! The guy was really nice & gave us a free pass to check it out tomorrow. Can't wait to take my little fishy.

I have time off in about 3 weeks!

Spring is on the way! We had a wonderful thunderstorm here today. The crocuses are blooming & the daffodils are starting to spring up.

A Letter to Insurance PART 2

2010-03-09T00:01:00.000-05:00

Dear Ci.gna,

I don't really want to say thank you. I just want to let you know IT IS ABOUT TIME! You finally decided to do the right thing. It only took me 3 months, 3 appeals, multiple letters & support notes from myself and the doctors, lots of trips to the doctor for letters, a large amount of hoop jumping, too much stress and too many tears to count. I am sure you were hoping I would go away and not do all the work it required to get my daughter a simple lightweight pediatric wheelchair. WRONG!

After you had a meeting of your Medical Necessity Committee (which I opted to not sit in via conference call cause I let go and let God), you sent a letter to ME (not MM) telling me you will cover her chair. I am assuming the persons on this committee understood Spastic Diplegic Cerebral Palsy. I am quite sure this cost a large amount of extra money and time on your company's behalf. So, the chair will be whatever the price it is PLUS the cost of the 2 RNs & 1 MD on the committe, the cost of the letters (which were overnighted) and the appeals associates time. Not a very good use of resources in my opinion. I now know why my premiums keep going up and yet, you are paying for less. Sounds like your customers need to have a utilization review of your company and deny salary of certain people for creating BS work.

F#$k you very much for all of the added stress in my life. I am quite sure you will be denying my future claims for hypertension and anxiety.

Sincerely,

Meghatrons Mom

I will be writing to Variety, The Children's Charity, to thank them for covering the chair & the chair place will be refunding them their money. (I might need them to pay for her next chair)

Sometimes, it is worth the fight.

Brain Thaw

2010-03-07T15:31:00.003-05:00

The sun has come out. I have my formal complaint filed, I am just waiting to here from the State BOE. If interested, here it is. Hope this helps if any of you ever have to do it, although I pray you never will. (all names have been replaced with *****) Let me know what you think, now that I feel I have a degree in special education law! LOL

Attachment to Formal Complaint

Note: Exhibits are attached with complaint. Recording is in minutes from the recording this parent made during the meeting.

#1 Failure to do Reevaluations in a timely manner.
--The District failed to not only provide but did not even begin the reevaluation process within the required time frame. The triennial reevaluations were due on March 8, 2009. (Exhibits A, B, C, D) The District did not even request for the reevaluations to be done until September 23, 2009 (Exhibit E). The District is out of compliance with IDEA part D Sec 300.303. Even being late, they were not done in a timely manner nor provided in a timely manner. The reports were still being done up until the IEP meeting on February 8, 2010. (Exhibit F.1) The District is out of compliance with IDEA part D Sec 300.301 (c) 1.i.
#2 Failure to comply with request to Review Records and Inspect Records in a timely manner
--The District failed to allow this parent to inspect and review any and all reports prior to the IEP meeting scheduled on January 26, 2010. An email was sent to *****, Resource & Case Manager, on January 20, 2010, requesting any of the reports, updates evaluations (which should have been triennial reevaluations) prior to the January 26, 2010, IEP meeting (Exhibit G) Only 2 reports were received, occupational therapy & physical therapy. The meeting had to be re-scheduled for February 9, 2010. Again, an email was sent on February 1, 2010 requesting the remaining reports (Exhibit H). An incomplete speech/language report was sent home with ***** on February 8, 2010 (Exhibit F.2). The District is out of compliance with IDEA 300.613 (a) comply with a request without unnecessary delay and before any meeting regarding an IEP
#3 Failure to comply with request to Review Records and Inspect Records in a timely manner
-- The District failed to allow this parent to review & inspect the psychology triennial reevaluation when requested. Emails were sent by this parent on January 20, 2010 & on February 1, 2010 (Exhibits G, H), requesting to review any reports prior to the IEP meeting. An email was sent on February 4, 2010, by *****, Resource & Case Manager. It stated that the school psychologist’s supervisor rather them go over the results with parents in person & she would be happy to do it 30 minutes prior to the meeting (Exhibit I). I then inquired during the IEP meeting on February 9, 2010 (which was recorded by this parent & The District), why I couldn't have had the report prior to since it is my right. *****, school psychologist, stated “it is our county policy to not” (Recording 1:46:52). The District is out of compliance with IDEA 300.613 (a). comply with a request without unnecessary delay and before any meeting regarding an IEP
--The District has failed to allow this parent to review any data collection or anecdotal made supporting the IEP goals. This parent asked multiple times during February 9, 2010, IEP meeting to see the data supporting goals from disciplines (SL/T Recording 1:40:12, 59:44; OT Recording 1:03:34; Resource Recording 21:05). As of this writing, no data has ever been provided to this parent. The District is out of compliance with IDEA 300.613 (a). comply with a request without unnecessary delay and before any meeting regarding an IEP

#4 Failure to do Re-evaluations in a timely manner.
---The District failed to do a formal physical therapy reevaluation for my daughter’s triennial reevaluation (Recording 1:12:45). The physical therapist, *****, submitted a report to us on January 27, 2010, for the February 9, 2010, IEP meeting (Exhibit J,). The report was almost the same report from January 2009 (Exhibit K). It had errors in it as well (Exhibit J.1, J.2). The District is out of compliance of IDEA part D Sec 300.303 (b) (2) must occur at least once every 3 years.

#5 Failure to make Assistive Technology Available in order to receive FAPE
---The District has failed to provide what is required for my daughter to access all of her learning materials through her Assistive Technology (a label maker for answering worksheets, a word processor for writing homework) (Exhibit L). Instead the District has continued to require me to fund the label maker & refills, printer ink for school, printer ink for home, paper etc. (Exhibits M & O, Recording 53:40, 53:32 52:19) The occupational therapy reevaluation (January 12, 2010) clearly shows a need for Assistive Technology, listing label maker & computer (Exhibit N). The OT also stated during February 9. 2010, meeting that “underlying skills to complete written expression in a traditional fashion are limited and delayed, so there has to be some type of strategies for written expression” (Recording 54:28). The District has also refused to include the exact needs within the IEP as requested, only placing AT- Adapted Writing Tools under Supplementary Aids on the IEP (Exhibit R). The District is out of compliance with IDEA 602 (2) (B) purchasing, leasing, or otherwise providing for the acquisition of assistive technology devices by such child; 300.6 (c) Selecting, designing, fitting, customizing, adapting, applying, maintaining, repairing, or replacing assistive technology devices & 300.105 (b) On a case-by-case basis, the use of school-purchased assistive technology devices in a child's home or in other settings is required if the child's IEP Team determines that the child needs access to those devices in order to receive FAPE.

#6 The District Failed to provide FAPE by addressing goals that were met, instead continued to just allow the skills to stagnate instead of proposing new objectives/goals for there to be consistent educational progress (Exhibits P & Q).

#7 The District has failed to appropriately include within the IEP what is necessary for my daughter to travel safely on the bus under supplementary aids/services. A letter of concern in regards to bus safety was submitted by Dr. ***** at IEP meeting held April 28, 2009 (Exhibit S). These parents also expressed concern in The District wanting to remove daughter from a five point harness on the bus at meeting on February 9, 2010 (Recording 1:07:39). The principal, ***** stated “Assistant said she is getting too big for car seat on the bus. The driver has suggested maybe looking at a seat belt.” (Recording 1:09:34, 1:08:00) Parent stated “Seems straps need to be readjusted every morning like a smaller child rides in the seat too” (Recording 1:06:25, 28:37). The District is out of compliance with **** State Board of Education Rule 0520-1-9-.05 (3) (d). There were also bussing recommendations made at April 28, 2009 meeting that were not added back to current IEP (Exhibit T, PT discussed this Recording 1:09:15). A letter with list of objections was sent on February 23, 2010, to **** (Exhibit U). As of writing of this complaint, no reply has been made by The District.

#8 The District has continually failed to appropriately include any of our parental concerns on the IEP (Exhibits U& V). The February 9, 2010 IEP Parent Concerns part is left blank, even though we had several concerns in the meeting (Exhibit V, Recording: 1:28:45, 57:03, 56:00, 30:42, 24:50, 14:42) We were never formally asked our concerns as meetings in the past. The IEP is left blank on the parents stated draft (Exhibit V).

Brain Freeze

2010-02-26T20:36:00.008-05:00

And it's not from this ridiculously cold winter either.

I am spending every day off & each spare minute I have putting together my administrative complaint for the state board of education. Each complaint I have has to be backed up by the correct part of the law as well as show data (or lack of) supporting my complaint. It is a large amount of research & tricky wording to get the complaint "just right". I have worked on it for several hours each day off until my head hurts & my eyes can't focus. I feel like I am back in school again too with as much work & research I am doing here.

Sadly, the list of complaints I have is at 8 items. This means that MM's rights under IDEA and to receive FAPE have been violated that many times. It is ridiculous! This school district is so lacking & they have a culture of poor service for special education. I can't figure out if it is the entire county or just this school. I think it is a mixture of both.

It makes me even sadder to think that I will be putting up with this for at least the next 11 years. I hope that we will be able to eventually sell our house & move to the next county over. I am not naive to think moving will magically make all of our problems disappear, but I do think a large majority of them will be alleviated.

After I file this administrative complaint & receive notice they got it, I will be filing the papers for mediation. Waiting to file for mediation is in hopes that it will give me some leverage when they realize they are being investigated. This was on advice from a wonderful parental advocate. She is so super helpful! I need to get her & my bestie a gift card once this is all done. I am hoping I do not have to go to Due Process, but will if needed.

Have you ever had to file a complaint, go to mediation or due process? If so, I would love to hear from you!

On a different note: Some of these feelings I keep posting about may be medically related. I had a dr appt the other day. I have had some problems with my heart since this last illness. The dr checked my thryoid. It appears I have a major hypothyroidism! (googl.e some of the symptoms and you will find many things I have complained of: severe fatigue, loss of energy, weight gain, difficulty losing weight, depression, headaches, allergies that get worse, hypertension, increased heart rate, lack of libido, memory loss, irritability, fuzzy thinking, difficulty following conversation or train of thought). I am curious to see if some of my elevated BP comes down with treating this, as well as my depression. Fingers crossed that it is a simple little pill that will give me the boost I need & help get me off of some of the crazy high doses of BP meds & anti depressants!

And MM has ANOTHER cold/upper airway infection. I hate auto immune issues.

Where are you?

2010-02-21T13:36:00.010-05:00

I miss the old me.

How I used to describe myself:
Love to laugh, joke & just have fun. A perfectionist who likes to succeed & do everything as the best. Not a jealous type. Not quick to anger. Peacemaker, fixer, go-getter. Not a yeller or a fighter. Assertive. Naive. Independent & self-reliant. Dreamer but a serious planner, who can be spontaneous (especially when it comes to road trips) Never skinny, but fit & curvy. Organized & a good housekeeper.

I haven't been me since May 2000. Almost a decade since I lost myself. Time flies. I realize we all grow & change. This isn't just that.

After my bout of M.RS.A infection that could have cost me my life, I changed. That was a good thing. It made me appreciate life a little more. It made me not take things for granted. It scared me too, facing my own mortality. And I packed on weight.

A couple years later, we started trying to have a baby. It was hard and we lost a pregnancy. I fell apart. Trying to conceive took a toll on us, as it does everyone. Again, I changed. That brought on my first bout with anxiety/depression. I fought through it, with a little bit of meds. It made me angry, sad, jealous. I found out I wasn't good at everything I tried. I found out I can fail. I found out I do have a jealous bone or two in my body. Things that aren't all bad, but certainly different feelings for me. And I packed on weight.

I finally got pregnant with MM. I never complained at all during the pregnancy. It had a rocky start and horrific all-day sickness through out the entire pregnancy. I made it farther than anyone thought I would. I just kept plugging along, one day at a time. It wasn't the perfect pregnancy. Nothing went as I planned. It was okay though. We were having a baby. Then I developed preeclampsia & all things changed. It certainly was different being on the other side of the incubator. I had to rely on others to take care of me AND my child. I learned at times I was helpless. I realized I was, once again, a failure at something. I again learned anger. Anger at all the easy pregnancies; anger at babies being born on time; anger at ladies who got to have their babies in the room with them & leave the hospital with their babies. I learned I could be passive-aggressive with NICU nurses. I lost my ability to speak up when it came to MM & what was best because I was so sick myself. I also got intimidated by others cause they could care for my child better than me.

We brought her home & I thought we would live happily ever after. Wrong- there went my naivity. She was a lot of work, high maintenance. Slowly clutter over came the house. Then one diagnosis after another came. I was constantly on the road, going from one doctor or therapy to the next or people were coming to the house for treatment. Life became a whirlwind of this stuff along with working nearly full time. Something had to give, so the house became kind of clean and cluttered, not neat & spotless. Once more, anger boiled up cause my life wasn't kinder.mus.ic, mommy playdates & on time milestones. Helplessness came on cause of all the therapists knowing how to help fix what is wrong with my daughter. I lost all my spontaneity cause of all the incessant appointments, the autism, the sensory issues. I lost alot of my dreams. I learned I can't fix everything. More anxiety & depression set in, once I woke up from the first year fog, but it settled in and has stayed. I learned how quickly I could get angry at everyone when stressed. And I packed on weight.

Moving to the public school system was a real eye opener. I have learned I can fly off the handle and go from zero to pi$$ed off in 0.2 seconds. I have learned I can yell (at whoever is nearby) and FIGHT. OMG, can I fight, but mostly out of necessity. None of this is fun. I do have fun sometimes, but most of my life is stress & work.

So, like I said, I miss the old me. I am working hard trying to find parts of the old me as the new me moves through this life. I am trying to lose weight. So far, I have lost 11 lbs since the beginning of the year. Pretty good considering I have been on large amounts of ster.oids for the last 3 weeks. I have started keeping up with the house again. It has never been dirty, but it is now decluttered & super clean the way I like it. I am being more assertive when it comes to matters of MM and not just taking for granted what they tell me. I am working on not being so quick to anger & trying to be the happy-go-lucky once more. I am learning I don't have to be perfect all the time and its okay. I don't know if I can ever have back the spontaneity I used to enjoy with all of MM's issues. We ALL are affected by autism in that way. I am only feeling moderately depressed at times, not the severe gripping kind I have felt in the past. (That's not to say it won't creep up on me and grab me again. I take my meds & I will run to counseling when I feel it starting if I can recognize it) Most of all, I want to have lots of fun again. I don't know how I will get there, but I will, slowly but surely.

The Give Me a Break Line

2010-02-20T06:04:00.002-05:00

Hey! Thanks for all the prayers, thoughts, etc cause it worked! His heart is clear this time (he's had stents in the past)!!! It is probably a gi thing like reflux or a hernia. I am so thankful!

We actually got a pass to the Give Me a Break Line for now! Woohoo!

Enough Already, 2010!-- UPDATE

2010-02-18T14:19:00.004-05:00

We are having one bang up of a year so far.

I told you of my illness hat landed me in the hospital for several days. While I was there, my FIL had to have some stents put in his carotid artery cause he suffered a stroke Christmas eve. My BIL needs another surgery on his legs after having a heart bypass & bypasses for both his legs last year. My sister had a seizure out of no where a few weeks ago. The EEG showed seizure activity, so she is being place on meds & needs a 48 hour EEG. This whole school things is out of control. All of MMs appointments are getting to come around again. I have been avoiding scheduling some of them just so I dont have to deal. I have had horrible insmonia & crazy emotions from the steroids. DH & I are going through another rocky patch, not seeing eye to eye on the school stuff, money, etc.

Now, my mom just called me. My dad is in the ER with chest pains & EKG changes. Possible heart attack.

I am so spent. I am really losing my faith here. I know that God doesn't cause this, but how much more can I handle? Could really use some prayers/vibes or whatever you do. Where is the give me a break line? I REALLY need it.

***He will be having a heart cath tomorrow to see what is going on. Thanks for the prayers!***

Literally Autsim

2010-02-17T07:00:00.000-05:00

About 15 minutes after DH put MM to bed, I went upstairs. I could hear her reading her books talking to herself as she usually does. I then hear her pass gas kind of loud. Then she says: "Cinderella, you far.ted I heard you!"

She came home from school with super star sticker on her shirt.
Me: Why did you get that sticker?
MM: I a smarty pants
Me: I know you are a smarty pants, but what did you do to get that sticker?
MM: (with exaggerated hand movements) I the only one who knew clockwise and counterclockwise! (she's only in first grade!)

New words that crack her up:
Tamper Evident Cap
Redundant
Are we going to go Wally World?

Cool Game!

2010-02-14T13:52:00.003-05:00

Since I have a blog, one can kind of guess I love the computer. I also like letting MM play on the computer, but don't just want to fill her mind with junk. She sometimes has a difficult time playing the games due to her hands, the visual parts or the noise of the games. I would also like a way for the computer to help her with some of the issues related to autism.

What's a mom to do?

Well, after checking the blogs I follow, I found out my friend, Colleen has posted a really cool contest! Go check it out!

BUT, before you go there, look at the website of the game creator! You have to tell her which game you would like in a comment to get an entry. They also have other items available on their website.

If you take your child to therapy, I am sure a therpist would love to add this to their arsenal. Go on, enter & go give Colleen some love!

Posted on Blog.ger Mess.age Bo.ard---UPDATE

2010-02-14T05:45:00.014-05:00

Your Blogs URL: tillthesshortbus.blogspot.com

I realize that Word Verification is a random assortment of letters and numbers designed to prevent spamming computers from leaving naughty responses on people's blogs. I realize that Blogger has certain measures in place to make sure that racist terms, foul language, etc never appear in a specific order.

That being said, I want to question WHY, on a blog about a child with disabilities, the R word came up for word verification. If you do not realize what the R word is, it is r-----*. This was on MY blog. I was mortified to read this in my comments.

With the large population of special needs blogs, both parents and others use Blogger as a networking tool to support one another. I think it is disgusting that you have not taken measures to prevent such a terrible word from appearing. Yes, it is true that certain populations of people do not understand why this is such a big deal. However, there is a huge number who understand how truly offensive this word is. As http://www.r-word.org/ says, "our language frames how we see each other". Allowing this as word verification just continues the pejorative attitude towards people with disabilities.

I hope & expect that action will be taken to prevent this from happening again. I do not want this on my blog. It would also be nice if a PUBLIC apology would be made to me and my fellow special needs bloggers.

I was unable to find where else to send this to. It needs to go to the top of the chain at Blogger.

*Did not want to use word here, but did in post

**Allie, I hope you don't mind, but I used your wonderful post as a guideline & paraphrased some of what you said.**

I encourage all of you to contact blogger as well. As soon as I find out where else to send this, I will. Anyone out there know?

******************************************************************
Okay, I posted a question on the help message board.

Now, here is the response I got from nite.cruzr (which if you just happen to click on his name in the post you can get his email)
As you state, word verification is a random jumble of letters and numbers. I'd be surprised if there are no world languages which don't see some "naughty" or "offensive" words pop up there, from time to time.

I realise that seeing "idiot" or "retard" from time to time will not fill you with joy. That said, if seeing that come up during word verification is the only offensive experience that you have during any given day, you must have a pretty darn good day overall.

I have forwarded this for Blogger's attention, however.

Nice, huh? He also asked if I was Ally cause she had posted as well.

Here is my reply to him:

to nitecruzr:

No, I am not Ally. She is the one who posted on my blog.

"HIS POST"

I did not ask for YOUR opinion about being offended. I asked for help in who I can contact. I have a child with special needs. You have NO IDEA what I encounter day in & day out, so please don't presume what type of day I have. There are a few assumptions I could make about you too, but I am not going to do that, cause that would be sinking to your level

I am thinking he might need some other emails or posts, huh? Oy vay.

THANKS FOR NOTHING GO.OGLE/BL.OGGER

And Runnin', Runnin'

2010-02-13T04:15:00.014-05:00

My mind, that is.

INSOMNI.A

I have it bad. Some of it is s.teriod induced (I was on high doses to help with my asthma), but I am weaning off of those. Most of it is stress induced.

All of this school stuff is crazy. I can't turn my brain off, no matter what. I have tried EVERYTHING except am.bi.en. I don't feel that bad, but how long can I keep going on less than 4 hours of sleep? I am a go to bed at 9 get up at 5 kind of girl. I worry that I will run myself down and get sick again. I can't afford that- physically, mentally, financially or time-wise!

The meeting with the attor.ney went very well. I don't think it will be a matter of getting lots of money like most people think when someone needs to get involved in litigation. It is a matter of forcing their hand and getting them to do what is appropriate for MM. For my initial consultation, we talked for 2 1/2 hours. He is going to review all the info, reports, IEPS, etc and then give me some legal advice.

I really liked this gentleman. He doesn't appear to be the "shark" that people talk about. He was very calming, very methodical, but OH SO knowledgeable. He is the guru for special education law around here. I am very pleased. He realizes I don't have a lot of money (it is tied up in MM's therapy & medical stuff) or time to fight a huge law suit. IF I have to, I will. In talking to him, I feel validated. I do not want to go into any more details than that on here, since blogs are public.

The reason why I feel validated? Per usual, DH. I don't understand why we can't seem to get on the same page here when it comes to the education stuff. I think I value education more than he does, since it was a priority in my family growing up and not so much in his. He thinks I am crazy & over reacting. He feels that they (the school) are trying to do the right thing, but they don't know how. WTH? He hasn't done any reading or research about the laws, rights of special ed children, etc. I HAVE. TONS! If he would, he would realize what is going on here. If it is lack of know how, then they better learn or get someone in there who does. It is the LAW. I don't believe they are even doing what is necessary and appropriate, THE LAW, not just the right thing. There are so many things that are wrong and it keeps getting worse, that it can't keep happening. She needs to be able to function and learn how to independently. They need to give her the tools so she can do this. They want to get by with as little as possible. I don't know if it is just laziness, lack of money, lack of knowledge, etc. I DO know that by doing what I am doing, we will get to the heart of it.

We are fortunate. I am college educated. I am organized. I know how to do research. I have a large number of resources to utilize. I am a great advocate for my child. I am not the first mother to go in there without the support of her husband. (This was all stuff the attorney told me; nice to hear from a stranger) What about the parents who only have a third grade level of reading? They will just blindly do what the school tells them. That is WRONG! I can't let this happen to MM or another child. I know that it will, but even if I can make one tiny bit of difference, then this is worth it.

It is part of his denial thing, I guess. It just pi$$es me off to no end. We fight, we don't talk, etc. I am tired of fighting him about everything. He was also angry that I am spending more money. TOO BAD! This is about MM! I want her to be the best she can be. He is a very good father to her. I know he loves her. He takes wonderful care of her. He tries hard. He is still learning himself and just waking up to the fact that this is life long. He is in his own grieving process. I just don't think he is a good partner to me.

In all fairness, I am not a good partner to him. We have lost our ability to communicate with one another. I can easily see why the divorce rate is so high. I am very passionate. I react emotionally at first (not in public, at home, I rant and rave, cry, etc), but then am very methodical about doing things. By reacting emotionally, I AM HUMAN! This is my child! My only child who happens to have some disabilities. My only child who I have to guide and teach her the world, in spite of her wanting to be in her own world. He thinks I am just plain crazy. He doesn't believe in depression or anxiety (even though he had some terrible bouts with anxiety not so long ago, I would have thought he would be more sympathetic). He thinks it is BS and that I just need to relax and it will be okay. If it were that simple.... He won't go back to counseling because he said he first suggested it a while ago (he went one session when I was having problems) and so he doesn't want to go now. I think that is childish. I wanted to first, you didn't, so now no way. I realize that was my mistake, but come on!

I need to step back myself and take a look. I am doing a large amount of self introspection on top of every thing else. I want my marriage to work.

It takes two though.

This is only 1/1,000,000 of all that is going on in my brain. And I wonder why I can't sleep?

The Gory Details

2010-02-09T20:11:00.004-05:00

First, thanks for the heads up comment about the needing to disagree. I have at least 10 days to sign off or do the disagree. Advice is ALWAYS welcome & much appreciated!

Please realize that as I type this, I am putting my thoughts out here which really has a large amount of sarcasm thrown in.

First, I had the scrambling when I said I would be recording the meeting. They had to run to find a tape recorder. That sort of set the tone for a not so happy meeting. The principal then started off with her usual "we are late, hurry up" type of statements. She is always trying to rush the meetings. It makes me very angry. She even tried to claim we would have to end the meeting cause they tape stopped. She had to get another tape! THE NERVE!

Psych started the meeting. I asked why I couldn't have had the report prior to the meeting. It is my right. She said it is our county policy to not. I told her that is the culture of the school system, NOT the federal law. ::::deer in headlights look from all::::: She then proceeded to read the report to us. I only teared up a bit, seeing once again in black & white that my child is on the spectrum. Same diagnosis- mild to moderate autism, high probability of asperger's, but just labeled ASD. (I guess since a new person did it that somewhere in the back of my crazy mind I was holding out hope it would be different. I hear all these stories of people claiming their child recovered & no longer tested for it. False hope. Thanks for nothing Jen.ny Mc.Carth.y WHY do you get to be rich, gorgeous & have your child "recovered"? I call BS. BUT I DIGRESS) Did I mention though that she has SUPERIOR intelligence in most things? Boo-yah! She is smart, she just can't always get it out! BUT, tell me something I didn't know!

We then moved on to SL/T. She too did not have the full report. Was asked why? PROCRASTINATION is their name of the game in this school. As she was going over her reports, I asked her for data points supporting this. ::::deer in headlights look from all::::: She said she had them, but not with her. WTH??? Except for the delay in reports, I believe she really is trying her best to help her & doing a good job.

OT, same thing. Went over report. I must say, OT was spot on. She gave us the report early, knows MM well & is doing wonders for her. She did a great job & I have no beef with her.

PT.... HAHAHAHAHAHA! What a joke! I already addressed that a bit. She really didn't have much to say. We didn't get a chance to ream her about the report cause she ran out to the bus to see the type of seating. Busing will not be an issue as in the past since she didn't do anything to change the report. I believe I will be asking for an independent eval.

Our Resource (which is her special ed/case manager) had no reports. I wanted to know why almost NONE of our goals were met in the IEP. She kept saying over & over how she met all of her academic goals, BUT she didn't show me any data to support that. I asked them all how they could NOT INCREASE her services when she is not meeting goals? They never really had an answer. They left the times & amount the same. The resource person made me very angry when she said she didn't have enough time/help. I said "Too bad, NOT MY PROBLEM".

I got a very major serious run around about her adaptive tech stuff. They are asking for ridiculousness. They don't want to scan her work or give her a lap top to take back & forth. They want her to do double work by transferring it to computer & stapling it. I am NOT paying for the ink on my printer to do this! I said the label maker is getting expensive for us and has no punctuation. They were like "too bad". The regular teacher even got mad & huffy about it. I have a large amount of anger about the way the were acting aggressively, adversarial & stonewalling. I tried hard to stay calm & did pretty well for the most part. Even my wonderful hubby was angry at the way they were acting.

We came up with some goals. I don't know about them. I am glad I have an appointment Friday morning with the attorney to figure out what I need to do. I do know I will be filing a complaint with the state, I will be sending a copy of the PT report with a letter & a list of concerns to her supervisor. I have on tape on the principal acted, her statements, etc. She sat on a laptop next to me during the meeting. I could see everything she was doing & NONE OF IT was related to our meeting. People got up & left the room without asking our permission. It was a mess and it is all recorded. I am standing up for MM, ourselves & for any one else that has to deal with this nonsense.

Sorry if this is scattered but I know SOOOOOOOO many of you are waiting.

Back, from IEP

2010-02-09T16:11:00.001-05:00

OMG! It was INTENSE!

I am so glad I have an appointment on Friday for advice.

I will update when I can. So much info to digest, so much BS to cut through.

Did not sign it when I left.

Just need to decompress right now. Thanks for the support!

F-R-E-E

2010-02-08T14:54:00.002-05:00

That spells FREE.... not cred.it report but CHOCOLATE BABY!!!!!!!

Go see my good buddy Ellen at LOVE THAT MAX to enter!!!!

But don't get too hopeful about winning. The good Lord knows I am going to need it after that meeting tomorrow!

What's Going On

2010-02-07T06:19:00.005-05:00

Busy, busy, busy.

Let me start with a chair update. All that I have to say is Arrrrrrrrrrrrrrrrrrrrrrrrrhhhhhhh! Insurance really can be a-holes. Tomorrow I send off all the paperwork and should hear in 15 days their denial. I know, way to be positive, huh? I am okay with it.

"What?" you are saying?

Not too fret. Our chair will be paid for either way. Nope, not out of my pocket. The wonderful people who we order the chair from found us a resource. It is for people like us, who work & pay our bills, but can't get SSDI or Medicaid. We should have our chair by mid March. I am very excited. If Ci.gna steps up, the provider will reimburse the charity. If not, we have MM's chair. A win-win situation. I am so very thankful that we are able to get funding from a wonderful charity. I will be writing a letter & sending pics for sure to them. They will be at the top of my list for people looking for charities to donate to. I must also mention all of my wonderful friends & coworkers who badgered the CEO of the DME place to get her a chair as well. It worked! Something to be excited, happy & positive about.

Another positive- CLARITY. We both got a horrible cold (landed me in the hospital for 5 days), but the deliciousness of clarity that comes after illness. I have spoke of this happening before to her. I don't know what it is, why it is, or how, but it is SWEET! Beautiful glimmer of what she would be without ASD interfering.

Guess what time it is?

ANNUAL IEP

Yep, another year has flown by and we are looking at our annual on Tuesday. It was scheduled a few weeks ago, but alas, I was trapped in the hospital fighting off the wheeze.

Now, I am not too nervous. These are getting to be old hat.
YEAH RIGHT!
I HATE THESE THINGS!

BUT, I do have lots of good things to report. Not good for them, but good for us. I am probably going to be retaining the services of an attorney. Can you say "OUT OF COMPLIANCE" big time???? My wonderful, amazing friend who was a special ed major & now a vice prinicpal, is helping me. She said she would do a conference call if needed. Just allow me to high-light a few of the problems we have.

---We signed back in September to have our 3 year re-evals done. We still have not heard about them. We will get them at the meeting. Federal law is 65 business days!

---I asked for the reports prior to the other meeting. Then we rescheduled. I only have 2 reports. I am entitled to them at least 2 days prior to meeting.

---- I was told I could not have one of the reports, but they would go over it with me 30 minutes prior to meeting.

----The wonderful school physcial therapist (sarcasm, sarcasm, sarcasm) did come up with a report. It is the same freakin' report from a year ago. She changed the date only. It still says MM is 5 & in kindergarten! This is the one who says she shouldn't wear her DAFOs to school & should be on a regular ed bus. I am so taking her down. This is MY CHILD'S well-being she is so carelessly messing up. This also, the one who thinks she only needs 30 minutes a MONTH of PT!

--- I have all of this in writing via emails and the reports.

---I am asking for all the anectdotals they share with each other & the data points they collect her goals on. I can almost guarantee it won't be available.

---I will be recording the meeting.

---I am asking for a PC2Go (it is $500) and a program to scan her work. I had to request the AT (adaptive tech) person to be there. They weren't even going to have her! I asked to talk to her back in the meeting & have never heard from her! BS!

My bestest buddy is very confident I have a wonderful case & am excited to get MM what is necessary& appropriate for her to function.

I know this a quick bomb to drop with all of this info. But, as you can see, I am busy, busy, busy getting all of my ducks in a row.

A Letter to Insurance

2010-01-10T08:39:00.006-05:00

Dear Ci.gna,

Yes, you have been my insurance carrier for several years now. I pay out the nose so I can have decent insurance. I do not understand you in any way, shape or form. You so easily pay for some things and fight, deny, fight, deny other things all under the guise that my employer is asking you to do this. I will not take the most recent coverage denial lying down.

We were fitted for a wheelchair back in September. Who WANTS their child to need one (unless they have Munch.hausen by Proxy)? It was a life altering, traumatic experience to realize that my child will need one and come to the decision to get fitted. I find it truly crappy that you send us the paperwork for denial two weeks before we were supposed to get the chair. It is crappier that you sent it addressed to my child. She is only six and does not understand the ins and outs of the insurance BS you put us through (although she might be able to make sense of your nonsense in her world). It is the crappiest that it was right before Christmas.

What part of Spastic Diplegic Cerebral Palsy do you not understand? Yes, she walks. She doesn't walk far or well for long periods of time. We can't make it through the grocery story, let alone Walmarx, the mall or downtown parking to get to dr. appointments with out her needing to be carried or ride (in her stroller which if for babies, she has NO independence in that). You have paid for her Mac.laren Major with insert, her multiple DAFOs, her weekly therapies and numerous dr. appointments.

Yet, you deny her wheelchair for ridiculous reasons. Quotes from the letter:

=The individual does not have a disease process or injury for which weight-bearing and/or ambulation is contraindicated.
=The individual does not have a disease process or injury that precludes use of the lower extremities
= A seat width and/or depth of 14 inches or less is not recommended

Again, what part of Spastic Diplegic Cerebral Palsy is not understood??? As far as the smaller seat width---- she is a small child! DUH! DUH! DUH! They also do not want to give us a light weight wheelchair cause the caregiver can push a standard chair. I can, but she is, once again, a small child and we are hoping she can gain independence by maneuvering herself.

As I said before, I will NOT take this lying down. You ruined my Christmas and have started off my New Year on a sour note. I guess filing multiple back injury claims will help? I am filing every appeal you give me, already at the third level. I have gotten the CEO of my hospital involved (yes, I work at a hospital that has multiple people disbelieving this as well). A basic pediatric wheelchair is NOT a luxury for us, it is a necessity.

Ci.gna Insurance, you suck! F*@k you very much for you inattention to this matter.

Sincerely,
Meghatron's Mom

Wanting/Having a Number 2

2010-01-07T08:01:00.004-05:00

And I'm not talking about poo! (sorry, my 12 year old boy humor rearing its ugly head)

Ellen, one of my fav bloggers, has posted a very interesting question. It is so provocative that I feel like my answer needs its own post. I was reading the answers on her blog & felt like I would put the "harsh on the mellow" of the responders.

Am I scared to have a second child? I am "turdified".

My risk of pre-e is so high that I would probably have another preemie. Not just another preemie, but one more premature than MM. I feel like we were very fortunate with our NICU stay and don't really want to tempt the odds. Yes, she has CP as a long lasting reminder and they still don't know why (was it lack of nutrients in utero, was it lack of oxygen during labor, did it happen after delivery). My pre-e was quite severe. I have so many problems now with my blood pressure that I can't imagine risking my life for another little one. How is that fair to DH & MM? I know I would be on bed rest from very early on. Again, how is that fair to the tiny family I have now? I need my job, MM needs her therapy, DH needs a partner (no matter how poor of a job I have been doing), etc.

The whole autism thing plays into this as well. They still haven't found the cause or if it is truly genetic. I don't want to bring another child into the world with the potential of having ASD. What if I had a boy and he was more affected? Yes, we are very lucky with how well MM is doing and her functionality. I hate that she has to struggle & fight every day to make her way in this world.

I read of those who went on to have a second and it helped them. It all worked out and healed them of all the trauma they had from NICU, etc. When I envision having a second, I don't see all that happening for us. Is it cause my judgment is clouded by my own issues (depression)? I also read of how another has helped the older SNK. I totally can see that, but is the age gap too large now?

I am a realist and look at the odds. The odds are not in our favor. I love to gamble, but I try to be smart about it. I wouldn't bet on these odds with money, why take the risk with another life and risk our family as well? People say "adopt or get a surrogate". Surrogate would carry our DNA, so still risky. Both of those options are quite expensive too. We have spent a good sum of our savings on ABA & other therapy for MM. We just don't have thousands of dollars sitting around to adopt.

That doesn't mean that part of me doesn't say JUST DO IT! (although we can't just do it, it takes work for us to get pg & stay pg) Don't worry, just go for it. What will be will be. I have done it before, doing it now & it is working out. My heart does feel an empty place, yearning for more children. I always wanted a houseful of children. I know that wants & needs are two different things. I need to take care of the family I have and enjoy the child I have now.

And would some one please tell MM that she is not having a little sister? She keeps saying that over & over. She also told the teacher she has a baby brother named Patrick. These statements don't help me stand firm in my decision! .

So am I scared? What do you think?

Still Here

2010-01-06T10:38:00.001-05:00

Making a knot & hanging on. Will update soon.

Fighting the Fight

2009-11-30T11:53:00.003-05:00

Trying to, that is. A losing battle it has become.

I haven't posted in several weeks. I make attempts to sit down & blog, but nothing comes. I have lots to blog about, but can't make my finger move over the keys to bring out the words.

What fight am I fighting, but not winning?

Yep, those three nasty enemies of mine are trying to take over again. Depression, anxiety & insomnia.

Now, most of my personal issues are job related. My work has been super hectic. We have a lot of BS coming from management as well. There is just no time or place to decompress there. We are literally being trusted to manage people's life support, yet we aren't allowed to manage our own breaks at the moment. I have worked as a professional snot sucker for more than 15 years (makes me sound old!!!). I have never been treated so child-like in my career and I find it to be degrading. I came closerthanthis to quitting the other day, but I can't. I am stuck.

I need the FMLA for MM. If I go somewhere else, I will not have that for a year. She can't afford to be out of therapy that long. I need the insurance. Although I pay out the nose, I do have pretty decent insurance. Her health (and mine) desperately need it. If we could live without the money, I would. There just isn't any way unless we live off of assistance, which I am too proud to do. However, with me feeling like my sanity is in question, I wonder if I might get declared crazy & get that check any way.

Autie has been especially trying for the last two months or so. Her legs are getting tight. She is rotating in more. I am sad cause we are at the age where they told us she "wouldn't be able to be picked out of a crowd". WRONG! We are still dealing with all of this. Her wheelchair should be in in the next few weeks. DH is adamant about not using it. I had to carry her for several city blocks the other day & messed up my back. She is too big, too heavy & too stiff for me to carry around all the time now. She refuses to ride in her pushchair (aka stroller per her), so I get stuck carrying her.

I wish I could come to the place of total acceptance and stay there. It seems that any little thing in life can push me down when I least expect it. Evals came in along with the time of year when our first lost LB should have been born and the crap at work. BOOM! One step forward, two steps back. I envy so many of you here in bloggy land who are able to post so eloquently & deal with their child's disabilities with such grace. I have none. I am a bull in a China shop that can't seem to get it under control.

I feel myself sinking back into that black hole. I don't want to go back there. It is the holidays, I have so much to do. I am forcing myself to go through the steps, but I feel void of emotion. There are some good things happening around here, it just feels hard to celebrate when you are fighting. I just don't want to be in this life right now. I want to run away. I can't, but want to desperately.

Defeated

2009-11-08T20:16:00.002-05:00

Autism, you win this weekend. I am beat down, wore down, exhausted & brokenhearted.

I am in desperate need of a break from it all. I don't know how, when or where I can get one. Actually, ASD has been winning the past few weeks. It has gone from bad to worse. It is so sad to be praying she is getting sick & that would explain why she has been so out of sync, stimming & just "not here".

I am scared I am losing her. I know that I have said this before. She has always "come back" to her degree, but it terrifies me each & every time. I keep questioning myself: Is this it?

We also got a rough report from school on her behavior. Therapy evals are in for our private PT, OT. Very little gains made. Still stuck in the same age month we have been in forever. I am getting the feeling that this is as good as it gets. She is 6 1/2. We are still stuck around the 36 months mark motorically (just made up my own word). Am I wasting my time & money going to therapy every week?

I know so many of you would trade places with me in a heartbeat to even get here.

Just whining.

Dear Blogger

2009-11-07T20:13:00.003-05:00

I am getting really sick & tired of all the spamming comments. I have to leave comment moderation on @ all times due to the ridiculous amount of comments I get in Chinese for p.or.n or in Mexican for v.iag.ra. It's sofa king annoying. I am truly getting over it. I am so mad, I am thinking of moving to wor.dpr.ess. PLEASE fix this!

Thank you. That is all.

Literally Autism

2009-11-02T18:45:00.000-05:00

MM: Mom, we live green.
Me: Yes, MM, we do.
MM: Mom, we live green
(this repeated about 20 times)
Me: Yes, honey, we certainly do try to live green.
MM: But I sleep pink.

MM: Mom, did you know that my school is on Tipton.
Me: Yes, MM, I realize that.
MM: You "reckon"?
Me: What?
MM: That means do you recognize.
Me: I know what it means. That isn't proper English, that is southern slang. We really shouldn't say it.
MM: Ok, I recognize not to say it.
(I am sure more southern colloquialisms are to come & be explained since DH & I speak "northern")

While doing homework:
"Make words in the -ish family"
MM: Wish
Me: Very good. Can you think of another?
(I am thinking a 6 year old way, anticipating fish or dish)
MM: Irish, like me. Capital I- r
(she obviously has read the family crest we have on the wall, but we have never discussed with her)

In Typical M Family Style

2009-10-14T08:17:00.003-04:00

As you know, whenever I take time off, something happens.

We are not on our way to the buckeye state right now. MM was sent to school. Why are we not on the road? Nana is sick. Yep. Nana, who NEVER gets sick, has a bug. I don't know if it is HoNo, but she is definitely sick. Fever, achy, vomiting. Blah! I am over here nursing her right now & willing her to get better.

I reeeeeeeeeeaaaaaaaaaaaaaaaaaalllllllllllllllllllllllllllllllllllllllllly want to go see my sister & grandma. I just don't think I can handle MM alone on a road trip. I don't know how she would do. She gets easily stressed out by my pure boy nephew who bounces around with endless energy. She would be stressed from a change in scenery. She would be stressed from seeing people she hasn't seen in years. I would have no one to lean on to help when my patience are thin. My sister would try to help, but MM doesn't know her that well.

I am afraid of being alone with my child away from home.

That is such a sad statement.
Thanks for nothing Autism.

Still Here

2009-10-12T08:40:00.003-04:00

Long time, no posts, eh? Been busy & just not feeling like typing much.

First of all, MM survived the HoNo virus. Many days of high fever, lots of vomiting, lots of refusing to drink & even more defiance with taking Tami.flu. She missed a whole week of school. I did not get it. People were freaking out cause she had it. Everyone seems to forget that she DOES have an undiagnosed autoimmune disorder. That is why her's was so bad. We did not get the wonderful clearing that comes after she has a fever. Can't say I wasn't a little disappointed in that. The important thing is that we recovered.

She has decided to participate in a sporting activity. We offered everything under the sun: soccer, cheerleading, gymnastics, etc. What does she pick? Baton twirling or as she calls it "majorettes". We found a really kind lady who teaches here in town. Guess what? She LOVES it. She goes Tuesday evenings. It has been so good for her. All I can think of is where else can you get therapy for $7/ 30 minute session. She must work on motoring planning, fine motor with her hands, gross motor with the routines, tolerating noise of music & echoes in the gym, socialization with the other girls & letting them get into her space. It works all areas for the bargain price of $7! Can't beat it! I have a video, although it is grainy. Any one wanting to see it? Let me know & I will post it.

IEP. It went well. Yes, you read that right. IT WENT WELL. I thought there was going to be nashing of teeth, pulling of hair & tears. Nope. Not at all. The regular ed teacher did not understand her IEP. She does now. The OT & SL/T were spot on in helping to get her what she needs. She now has her very own special modified & adapted desk. She has a label maker, a computer, a new program for typing & will be getting her assignments changed to the computer. They are finally recognizing she has dyspraxia in regards to writing. It's not that she doesn't know, she just can't get her hands to do what her brain wants. Setting these things in place has made it much easier to send her to school. She was not wanting to go & melting down about it. Now, not any more problems. We addressed the bus issues & they are working on the lunch room problems. I really feel the therapists that have worked with MM really have a good grasp on things. They know us now & know we pull no punches, are not lazy & really care about her well being. They complimented us over & over on how well she is doing & how hard we worked with her over the summer. Nice. BUT, does not make up for them not giving her ESY! The principal is not my favorite person. She tries to stonewall so much & I know it is based on money. She kept telling us that they do not make the things we are asking for. She is full of bull & I called her on it. I know they do cause I have friends whose children one county over have it! DUH! Also, we researched after finding it out! I think I might ask for HER boss to sit in on the next meeting. They are also going to be doing her re-evals cause it has been over 3 years since she entered the public school system. Times flies when you are having fun-NOT! We will see what their results net.

Work has been hell with all the flu. I am exhausted when I get home. It is only going to get worse as the season goes. I will survive. BUT I am off for the next two weeks! Woohoo! I am taking MM on a little road trip the old homestead to visit family & friends. I hope she does okay. We are then having a Halloween party too. I dont know why I take on so much sometimes, but hey- you only live once!

Thanks for checking in on us. Cheapskate mom, I need my code for my button still! LOL She makes some really cute buttons for people to grab for your blog! It is a bargain too! Check out the link! Later!

HO-NO!

2009-09-21T20:36:00.005-04:00

That is what I am calling this thing known as H-one N-one. Well, I was joking & laughing about it. It's not so funny any more. Thanks to a certain auto immune disorder, we have one sick little girl here. We are at home, but might need to go in for IV fluids. She is a raging high fever, vomiting, coughing, runny nose, lethargic mess. We went to the doc today & they are almost positive it is HoNo! She definitely has type A flu, which odds are is HoNo. She was placed on Tamiflu, tylenol suppositories. They can't even give her any zofran cause she can't keep it down. Phenergan is out of the realm after this happened last time. We watch, medicate & wait. They are worried she will get pneumonia. I hope not.

I am on meds too in hopes I don't get it. That would be a dangerous mix with my asthma.

And along the lines of HO NO, we have an IEP Wednesday morning. There are so many crappy things going on with school. I do not have time to go into it now. Just wanted to let you all know we are alive.

Literally Autism

2009-09-02T06:10:00.001-04:00

MM: Mommy, I done. Mommy, wipe my butt now.
Me: Whoa, MM, that is a big turd.
MM: Why thank you (said in her most polite sweet voice as if being told she is pretty or something we have taught her to respond to)

MM: Pop-pop went to NAPA on Cherry St.
Me: No, he didn't. It wasn't on Cherry St. He ended up going to the one on Middlebrook
MM: He took Exit 386A Middlebrook Pike
(She told me this AFTER my dad called for directions & I wasn't sure if there even was an exit for that road)
Who needs a Tom.Tom when you got a MegMeg?

MM: Smell Katrina's feet. (katrina is her baby doll)
Me: ::::::smelling doll's feet:::::::: Peeeeeeeeeeeuuuuuuuuuuuuuuuu
MM: She has a fungus among us. It's a dermatophyte. She needs lamasil A T.
This game was repeated about 5 million times this week.

PTSD

2009-08-29T19:55:00.008-04:00

Sometimes, life is full of irony. Just yesterday, my mom & I were talking about the NICU. One of my best friends at work has started working in there. She keeps asking me to come back & work up there with her. I keep telling her I just can't. She says sure you can, come on. My mom said "I think you have some Post Traumatic Stress from the whole situation with MM". I tell her maybe & we move on to another subject.

Today, Ellen posted a blog about an article on NICU & PTSD. It is a very interesting article. As I read it, some things really screamed out at me. (I am condensing parts, so it is not direct quotes from the article)

"Experts say parents of NICU infants experience multiple traumas, beginning with the early delivery, which is often unexpected. The second trauma is seeing their own infant having traumatic medical procedures and life-threatening events. And third, they often are given serial bad news. The bad news keeps coming. It’s different from a car accident or an assault or rape where you get a single trauma and it’s over and you have to deal with it. With a preemie, every time you see your baby the experience comes up again.”

Absofreakinlutely. Even six years later, I still feel traumatized. An emergent c-section & she was whisked away, not to be seen for over 12 hours by me. I still carry anger over that. I didn't change her first diaper, help with her first bath, offer her comfort when she cried. Some one else did those things. She spent her first night in this world with strangers. Some days, I can't look at her without thinking of her in that damn plastic box with doors. I couldn't hardly hold her, only touch her through those doors. I remember the IV in her head that made her cringe & it was blown. I told the nurse, she wouldn't listen. I stood there, watching the nurse attempt to flush it & saw my baby literally push up so hard from pain she hit the top of the incubator. I was told I couldn't rock her cause preemies don't like vestibular movement. It just kept on & on & on. I carry that scab with me. I wish it were just a scar, but I must say it is still a scab. Granted, it is getting to be a crusty old scab.

"The Stanford study found that although none of the fathers experienced acute stress symptoms while their child was in the NICU, they actually had higher rates of post-traumatic stress than the mothers when they were followed up later. It may be that cultural roles compel the men to keep a brave front during the trauma to support their partners, Dr. Shaw said, adding, “But three months later, when the mothers have recovered, that’s when the fathers are allowed to fall apart.”

This sounds familiar. DH didn't really come to terms with all of this until fairly recently. I often just think he is keeping his head in the sand. Maybe not. Thanks NYTimes for giving me a different perspective on this. I need to be more patient with him, for he is suffering through this just as much as me.

"Later, mothers might experience “vulnerable child syndrome,” in which they become so anxious that a minor medical event sends them into a panic. Normal, everyday risks can seem life-threatening; “From the moment of their birth, and still to this day, we feel like we’re triaging everything and just hanging on"

I KNOW I suffer from the vulnerable child thing. A fever can send me over the edge with anxiety, stomach acid burning my throat, waiting for something bad to happen. It is never an easy illness for her, either due to her sensory stuff from ASD or she is really, really sick from her auto immune issues. I am also turdified she is going to have a seizure. She has NEVER had one, but kids with ASD and/or CP have a higher risk to have them. The hits keep coming too. I have recently learned that they can add another diagnosis to your child, even this late in the game. I do have to triage everything in her life: appointments, therapy, school. Which is more important? What do I need to focus on and what can I blow off? Although, I feel like I can't blow anything off for fear of not doing enough for her. I beat myself up pretty bad when it comes to her. How many times have I said I feel like I am just hanging on by a thread.

Now, I know why. I have had therapy. I can't remember if the therapist said anything about PTSD. It just hasn't really dawned on me. Until now.

So, can I go back and work in the NICU?

I. Just. Can't.

PSA- off topic

2009-08-23T09:20:00.006-04:00

I know my blog is about family, special needs, ASD, CP, etc, but the more I think about this, the more I have to sound off.

I have a friend who did an interview for a blog. She was asked some questions and answered them honestly, from her heart. She was in no way being offensive to any one. She was also stating an opinion. Of course, we all know there are trolls out there, lurking, waiting to attack at any moment. There was a comment left by a person who did not appear to be a troll. The person, however, did become offended by her opinion and went on to attack her in the comments & then in a post on her blog. My friend then felt the need to apologize profusely to this person & then posted an apology on her blog, feeling as if she had to do PR cause she is getting to be high profile.

I realize that the blogosphere reaches world wide. However, she & the commenter both live in the US of A. A place where we have the first amendment, entitling us to freedom of speech. See that first word there? Freedom. I am finding as I continue my adventures in blogging that many become offended by an opinion. I don't think there is anything wrong with having an opinion on a subject, one way or the other. As long as one is not spewing forth intentional hurt to others, I see no reason to attack. One should be able to state their counter opinion without being hurtful to the other person. Don't attack the person, argue your opinion. Simple points of debating 101.

It seems to me that we are causing ourselves to lose our freedom of speech. With so much political correctness, we have to censor ourselves so much. We are afraid to stand up for anything in fear of being criticized or attacked. I think that is why so many other countries hate us- we don't stand for anything. We back down. The principles this country was founded on have been compromised in the name of political correctness.

I believe you can't please everybody all of the time. However, please don't infringe on some one's freedom of speech. State your opinion, maybe use it as an opportunity to educate & move on. And as always....

If you don't like it, don't read it!

End of PSA

The Party, The Bus & Other Fuss

2009-08-20T15:47:00.009-04:00

I left it up to MM to decide about the party. She chose to go when she found out swimming was involved. I was so very proud of her for choosing to go to the party. It wasn't as bad as I imagined it was going to be. She enjoyed herself swimming. She swam through the crowds of people. She jumped off the diving board several times. She tried to cannon ball like the men were doing. She tried to give her mom a heart attack by wanting to go off backwards like the men. I am all for trying new things, but I wasn't ready for THAT! She enjoyed whacking the pinata. I only got a little sad a few times. First, when I saw all the other moms congregated talking while their children played with each other. I had to run interference for MM & she wanted me right there with her. Second, when all the children lined up to make their own cupcakes. Of course, they had a blast, getting frosting & sprinkles everywhere. She would have none of that, choosing to leave her cupcake plain & go inside for a glass of milk. The last time was when the pinata finally got opened. All the children jumped on the candy, she got pushed back & then just stood there. I finally reached down & grabbed the pinata to shake out some stuff for her. She doesn't even eat candy, but I want her to participate as much as she can. She was excited to pick up some stuff. She is also not greedy when it comes to stuff like that, only taking 3 pieces. That made me proud. All in all, not too painful. I also got a pretty nice tan out of it- BONUS!

School has started. I took her the first day. It was only a half day. She did well, even telling me she was "settled". I asked if I could go & she said "sure". I picked her up. She kept saying over & over she was a first grader. Day two she rode the bus to & from school. It seemed to go okay. She is very stimmy when she gets home & starving as well. The afternoons have been spent hearing her say "I not bossy" over & over for HOURS! She is not eating all that well at home or at school. This is normal for her until she adjusts. Haven't heard from the teacher which I do not like, but will set up a system with her next week. We will have a team meeting next week to discuss how it is going for her. The OT & PT have been quick to point out the fact she has no DAFOs on her feet. The short bus, which is now a big short bus, backs up the road every morning & afternoon. The bus owner was a little concerned about traffic letting the bus driver back up. He said he would get the police out there daily to direct traffic if need be. All I could think of is: GREAT! It's not enough we have the short bus pulling up everyday to draw attention, now we will have the police too. Thank goodness it doesn't seem to be a problem so far.

The DAFOs are being replaced for the third time. We are going back to what we had. We went yesterday to be recasted. She complained often about her feet being tired. She would even say her feet hurt, which is quite unusual for Miss HighPainThreshold. The PT wanted to have another strap added to them. We had them adjusted, redone, padding added, cut down. They kept leaving red marks on her ankles. The orothotist said no, enough is enough. She obviously still need the extra support, having to adjust them that much is not acceptable for a custom brace, put her back in what she had. The doc was called & she confirmed our decision. Sorry, PT, sometimes Mommy, Daddy & Nana know best. The orthotist is putting a rush on them, so hopefully they will be her next week.

This is getting lengthy, so I will wrap this up with one last thing. I had a comment left a few weeks ago about joining a health community. After being reviewed by the CEO of the site, I was accepted. I am know officially a member of the ASD community on there. See the new button over there on the left -------->? Pretty cool, huh? It will upload my blog posts there for people to read & send them here. On top of being a featured friend and now this, I expect my traffic to pick up even more. I am excited to connect with more people here in the blogosphere. At first, I just wanted my little blog here, in my little space, to have a place to write my thoughts. I have even told some people IRL about my blog that I wanted to keep a secret. I can't believe that people actually want to read these (crazy) thoughts!

She is almost done with therapy. Hurray for free wi-fi so I could update. Working the weekend, so don't be surprised if I am not around.

Update

2009-08-19T07:48:00.001-04:00

I know many of you are waiting for an update about the party & school. I will be back later today or tomorrow to give you one. I have been working & things have been HECTIC!

What to do?

2009-08-15T10:40:00.003-04:00

It is Saturday. What do thousands of children do on a Saturday afternoon? They attend a birthday party they were invited to. We were invited to my friend's daughter's first birthday party. I would have absolutely no hesitation in going if it were just my coworkers & her family. They are used to MM & understand her. However, her DH's family will be there as well as some of his friends & their families. People who don't know MM or anything about her. Strangers stress her. Stranger's children really stress her. She is already in full on ASD mode this morning. I will feel bad if I do not attend.

I just don't feel like being the poster child for autism today. I am not in the mood to answer questions, ignore the stares, work on calming her & just be stressed the whole party. It is not fun for me. I think I would be resisting the urge to give out my smart a$$ answers rather than being kind.

Some days I just can't. I think it might be one of those days. I am fighting the funk about this. I just want to climb in bed with the covers over my head & have a good cry. It makes me sad that we can't just load up & go to a birthday party. I don't know if I want to see all the NT children (neuro typical to all of my new followers) running around, care free, no problems.

Something so simple for most and not so for us.

StressFest '09-'10 (aka School Year '09-'10)

2009-08-14T16:00:00.002-04:00

Yes, it is about to begin. She starts Monday. Today was her last day of her summer school.

I think we are ready.

School supplies have been bought. Clothing needs have been assessed. We got a call from the bus owner today. She will have the same driver as last year- we LOVED her. We went by today & met her teacher. We also saw all of her other teachers & aides from the last two years. We saw the classroom. She picked her desk. They have most of her equipment ready for her in the room. They are more prepared this year for her.

I think they are ready.

I am actually excited for school to start.

I can't believe I just typed that sentence. It seems things are starting off on the right foot for once. It is almost too perfect. ::::looking around for that other shoe to drop:::::::

Here's to First Grade!

Look At MEEEEE!!!

2009-08-11T08:39:00.003-04:00

Yes, this little ol' blog of mine is getting some cool exposure. A really fun blogger, Tamara, of Mad Boastings of a Cheapskate Mom, has decided to make me one of her Featured Friends! I captioned one of her many funny pics that she posts & my quote got picked. I have blogged about her contests, this is her newest one! Her blog is not a SNK blog, although she just joined the club with her son's new diagnosis of PDD-NOS. She has a lot of humor (her stories of her weiner dogs crap me up) & some really great advice (it is not ASSvice- see the post below this) on how to save money. She has recently gotten some MEGA- exposure on her blog! She is such a talented writer. I am very honored to be a part of this.

She also made my own cool little button so it can be "grabbed"! See it up there? Cooooolsville, daddy-O. Now, I just need to figure out how to do that! LOL!

Opinions are like...

2009-08-10T15:29:00.006-04:00

As one blogger that I love to read calls it "Ass-vice". People are always full of it, willing to dish it out, even when not elicited. I suppose most mean well or are truly trying to help. I just don't know about it.

For example, my mother's friend (who also happens to be a nurse & is well aware of MM's disabilities) came into town. This lady has been a friend of my mother's for years & I really do adore her. She is quick witted, funny & sarcastic- my kind of humor for sure. MM knows of the friend, but is not familiar with her. She spent an hour with MM & I this morning. She was in full on ASD mode, complete with vocal ticks and flapping. To some, her voice & actions appear to be naughty behavior. She was very patient with her, which is unusual for those who don't really know her. She did a great job of ignoring the stims, tried to engage her & just generally appeared at ease with the situation (we went out to a restaurant for breakfast that is very small & we were the only ones in there to help out MM). Overall, it was a nice, short visit for MM. She tolerated her well.

After dropping off MM at school, she then proceeded to deal out the assvice. This wasn't something I would normally expect from her. At first, she told me what an amazing job I was doing. Thanks. No problem with that comment. She then gave me the standard God knows who to give the special kids to, etc. Although always well intended, it doesn't really ring true to me. Next came my favorites. She looks just like any other kid, just a little weird. Okay. Is she supposed to look horrible? She will grow up to be just fine. She will surprise you by the time she is sixteen. You won't be able to pick her out of a crowd. She will have a job & everything. You will truly be amazed, don't ever doubt her or give up on her. STOP RIGHT THERE! YOU HAVE A FRIGGIN' CRYSTAL BALL? WOW! I CAN'T BELIEVE IT. I am so glad you came into town to spend this hour with my child & tell me these things. I didn't realize that all of the hard work, hours of therapy, money spent, fighting with the schools & insurance companies, pushing, pushing, pushing was doubting & giving up on her. I have never believed she could surprise me since she has proved everyone wrong since the day she was born. I was definitely giving up on her at age 6, but since you just told me all of this, I guess I will keep working with her.

I just can't believe that in a mere decade, everything will be okay. So, now I have a time line of when my stress will be gone & our happily ever after will begin.

End of sarcasm.

Sometimes, I think a book needs to be written of things NOT to say to parents of SNK & what the right things are to say. I am sure it is out there somewhere and if not, it needs to be. How about posting your best ASSvice received in regards to your child or any thing else in your life?

Sounds Interesting

2009-08-05T14:50:00.002-04:00

I came across this interesting article today.

I am not really sure what I think of this. The education system early on is wanting LRE/Mainstreaming. Yet, here is a college doing the exact opposite. I will have to keep a close on eye on this cause we have about 12 years until college. Maybe less with the genius here!

Literally Autism

2009-08-01T20:41:00.002-04:00

Me: Did you toot?
MM: No
Me: Yes you did. Peeeuuuuuu. That is really stinky.
MM: Why thank you.

While playing the new Wi.i Re.sort Game:
MM: Let's play the skydiving game.
Daddy: Get ready to free fall. They opened the door.
MM: Pride goeth before a fall. Is that pride there?
(she has been reading Aesop's Fables)

MM: Mommy chase me so I can be TURDIFIED
Me: What is TURDIFIED?
MM: It's where you chase someone and make them frightened.

Spell It With Me Now: S-T-R-E-S-S

2009-07-23T20:47:00.012-04:00

Didn't realize it has been so long since my last post. Can you guess what has been going on from the title? Things that make you go Hmmmm...

Since this blog is mostly about MM, I will start there.

She finally recovered from that raging UTI. We did not get the great time of clarity we usually get post febrile illnesses. Nana (my wonderful mother) & I managed to sneak her off to the beach for a few days. She has been begging to go to Folly Beach, SC since she found it on a map. It was a quick trip there, a mere 6 hours, from landlockedville. She LOVED it. She did great. She just laid at the end of the surf & let it wash over her. She played for several hours. The weather was perfect- slightly overcast, not too hot. We swam in the hotel pool for over an hour both nights. It was the first trip with her that I ever really got to relax for a day. We left on a Wednesday morning & returned Friday. Nana & I wanted to stay another day, she would have none of that. It was time to "go to MM's house". It was fun while it lasted. The ride home wasn't good. There were a few accidents on the interstate, so it took 8 hours to get home. Lots of stimming while stuck in traffic. So much for relaxing...LOL

We have been having major DAFO problems. Our orthotists is pretty great (Big ups to Bill!). The PT made the decision to go to a smaller/shorter brace. I am not opposed to trying it. We went & got casted for new ones. Besides, the tall ones were too small causing blisters & pressure points. I don't know what is going on with Casc.ade (the company who makes the DAFOs). We got the first pair & they were HUGE. So, after trying them for several days and one PT appointment, a call was put in to Bill. They reordered the DAFOs with some mods. It then took another 2 weeks to get them. In all, the girl had been without braces for 7 weeks. The new ones aren't much better. She is having a hard time in them. All kinds of explanations have been given from too big to the shoes over them making them too tight to needing to learn how to walk with less support to needing to get restretched. She complains they hurt all the time. This is the child who never says a peep about pain. They are getting a few more days, the I am demanding a recast and going back to the tall ones.

Due to the lack of DAFOs, growth spurt and her CP, she is having lots of trouble doing long distance walking. She has a push chair for this reason. Yes, it is a Mac.laren Major. She sees this as a stroller. I am informed a million times a day that she is not a baby. She is starting to refuse to ride in the Major, but demanding to be carried or lifted into the grocery store cart. She is getting quite big. The specialist told me that we would need a wheelchair around the age of 6 but I put it out of my mind. "Not my child". Well, we do. I can't carry her & lift her up so high forever. She also can't be stuffed into a grocery cart much longer. She tries to rock herself to move the stroller & pushes off of stuff to get around. I called the specialist to get an appointment. We can't get in until January. Yes, you read that right. JANUARY. We need to get the ball rolling on a chair now. At least the nurse is kind, knows I am not a doofus & took pity on us. She is going to send the order to the insurance company & try to squeeze us into a seating clinic. Now, to convince the hubs that she NEEDS the chair. He lives in denial & doesn't think she needs any assistance.

School starts in a few weeks, no idea who her teacher is going to be. I am trying my best to prepare her. I don't think she realizes how long her day will be. I think she will have a hard time transitioning & has had quite a bit of regression this summer. As I posted before, her summer school is not going as well as last year. She also had an ESY in addition to the private place we put her. Lesson learned for me that she needs ESY. I know they will say she doesn't & has no regression. We will see.

Now, onto me.

Work has been super stressful. We have had some really sick people. In addition to the stress of that, there has been so many changes going on. Every day it is something new to learn & try to remember to complete. We have new residents (it is July) who don't know anything. I have also had someone to orient every single day on top of my assignment. I come home exhausted which leads me to the next topic.

Sleep. I have been having bouts of insomnia. I have also been having bouts of snoring where DH can't even sleep in the bed with me. I had a sleep study two weeks ago. I am waiting for the results. I will probably have to have another one to get a C.PAP machine. UGH. I hope it will help with my headaches, lower my blood pressure, help with my depression & maybe my exhaustion. They kept asking if I was tired all the time. My answer: I have a child who was born premature now with disabilities. I have been tired for SIX YEARS!!!!

DH brother had a heart bypass last week. He is only 42! He has to have another major surgery in six weeks for a bypass on the arteries in his legs. Very scary. I am terrified DH will end up the same way. He is only 33. He has been so worried about his brother. He lost his other brother in a terrible car accident about 18 years ago. He appears to be recovering well right now & even went home earlier than expected.

All of this stuff is giving me major panic attacks again. This is probably the reason for my insomnia as well. I can't find time to go back to the therapist. Maybe when the girl is in school I will. I don't know how much more medicine I can take. I don't want to take any more. I just want to know how to cope all the time. I feel like I flounder every day. When I look around me, it seems like everyone else has it all together. Even the SN parents I know in real life don't seem to be floundering or they are better at hiding it than me.

When does it ever end? I have said it before & I will say it again:

WHERE IS THE GIVE ME A BREAK LINE?

My apologies to all for my lack of posting on your blogs. I do try to keep up with you. I am praying for those who need prayin', thinking of those who need thoughts, laughing along with those who laugh & shedding tears for those who need water works. Thanks to you all for your comments & welcome to my new readers. It is amazing how cool the net is & how people from all over the globe want to hear about our little family. Much love to you all!

Viral? Nope.

2009-06-30T20:17:00.003-04:00

Been MIA due to MM having another lengthy illness. It involved a high fever- 104.9 in the armpit, vomiting, lethargy, barky coughing, runny nose, a trip to the ER, a trip to the pediatrician office. The ER said it was viral and to wait it out. I didn't really agree with the super high fever. It then continued on for 8 days, finally culminating in a raging UTI. Poor thing. Today is the first day I have seen a glimmer of her in there. She actually ate some food today. I hope this is it & she can kick this thing. It is so hard to guess what is wrong with her, but she actually did finally tell us her butt hurt which lead to the UTI suspicion. Like I said, it it a major UTI. She is on some pretty strong antibiotics for fear of it moving to her kidneys since it went on too long. I am exhausted cause I was up for 4 nights in a row giving meds every 3 hours for her fever. DH has actually let me take a nap the last two days we were off together.

During the illness, the ER doctor gave her phenergan (sp.) for vomiting. It made her severely ataxic, rigid and she kept doing weird things with her mouth. Turns out, it can cause neuro problems for those with neuro issues. I told the ER doc TWICE she had CP & ASD. What part of neuro is that not? I swear, it is getting so scary any more when it comes to dealing with the medical profession & I AM a medical person! My number one rule is listen to your patients or their family. Easy enough? Obviously not for some. Needless to say, we had the crap scared out of us once more. It is only zofran for us from now on & it is listed on her chart to never give her phenergan again.

We keep taking the punches & getting back up.

Weekend Survival Mode

2009-06-20T13:30:00.002-04:00

As I said before, I am really tired. It is the weekend that I am off. Lately, on the weekends I am off, I feel like I am in survival mode. I just try to get by with my sanity intact. MM being out of school is really NOT a good thing. I have tried my best, come up with (what I thought was) a pretty good schedule for her, but I have failed. She stims & melts down so much that I want to stab myself in the eye with a pen. Not really, well the stabbing eye part. This is the first time in years that she has not had an ESY. It is not working for her or us. I am so worn down with patience & my nerves are shot. I really need a break from everything- work, her, my dh, my life.

I want a vacation so bad. Sadly, I want one all by my selfish self. I hear, see & read about everyone having wonderful vacations with their families. That just doesn't happen here. MM can't hates going places. It becomes a lot of work to calm her. DH gets easily frustrated with us, I get really angry with him. (He too is hard to travel & vacation with. He doesn't like to drive long distances & doesn't like to fly- WTH???? Doesn't leave many options for us) I feel trapped here. I feel like I am a horrible mother for wanting alone time. I need to recharge my batteries. I am like a car with a dead battery that hasn't been replaced. I am constantly having to be "jumped" every time I need to do anything. Although, one of these times, I am not going to start.

This is not what I envisioned when I dreamed of having a family. I am so bummed right now.

That is all.

EASIEST Giveaway EVAH!

2009-06-16T09:00:00.002-04:00

One of my fav blog buddies, who left me some really kind words on the previous post, has lots of give aways. She has one that hasn't closed yet. She still has about 8 spots open. Go show her some love and leave a comment. You will get the give away!

This is great for all you Cheapskates!

Go on, why are you still reading this! FREE & easy I tell ya!

Warning: This Post Uses Offensive (to some) Language

2009-06-15T15:05:00.005-04:00

Some days, I just think "Autism, you are an Asshole!". It really can drive me crazy; completely to the edge of insanity. It has been this way for the last few weeks around here.

MM has been constantly stimming. Her favorite stim is language which means we ALL get to "enjoy" the stimming. She stims when happy. She stims when upset. She stims when she gets up way, way too early. She stims when she is overly tired. She stims when nervous. These vocal stims can last for hours sometimes. Here is a mini list of her current favorite stimming statements:

"Up to your room"- this is yelled at full force, usually in bed, either when trying to go to sleep or very early in the morning. Thanks Berenstain Bears for this one.

"How do you wipe Clara's bottom? From the top to the bottom? Yes, never bottom to top. Clara's hygiene is very important"- this one is usually asked of a person about 5 gazillion times a day. Even if you answer, you will be asked this over & over & over. Thanks My Baby DS game for this one.

"What body systems are there? Skeletal, Muscular, Digestive, Circulatory & Nervous"- See above about the frequency of this one. Thanks science book for this one.

These are just a few of them. I am so tired of hearing these. I am just plain tired. She did so well for a couple of weeks. I bragged, boasted & strutted like a peacock. Now, I am just plain defeated, exhausted & sad. This really isn't going to go away. No matter how much therapy we have done, trying to redirect, ignore, etc., it is always going to be here (not just the stims, but everything about it). I don't like living with it. I can't make peace with it or even be its friend. Why?

Cause autism is an asshole.

Maybe I will feel better next week.

Next Sunday Is

2009-06-13T20:55:00.007-04:00

Father's Day! Can you believe it? It is coming up fast. I actually have already bought DH a little something from the Meghatron. For those of you who procrastinate or are at a loss, check this out. This is a neat blog, done by a really cool chic I met on a message board about 5 years ago. She is a mom of 3 little boys & is an AMAZING writer too! I also love her cause we share the same bizarre birthday! Show her some love & maybe you can win this!

SSSSSSShhhh... don't tell her that I would probably buy myself some flowers instead of DH. They have other gifts, but a girl's gotta do what a girl's gotta do!

Anon Confessions

2009-06-05T11:51:00.003-04:00

Leaving this up for a little while longer since the comments seem to be slowly rolling in. Keep 'em coming. Get it all off your chest! This is the place to do it. No judgment. I always moderate the comments, so if a troll shows up, it will be rejected. Don't be afraid, just use the anonymous feature.

I saw this on another blog & thought it was interesting. Hers was letting people confess their deep, dark secrets such as "I am meeting a man I met online this afternoon to have s.ex with him". She had them post in the comments section.

I was thinking we could post anonymously our true secrets, fears, anger, etc about having a SNK. It can also be about anything else you want to get off your mind. UNLOAD HERE. Don't forget to use the anonymous feature! Can't wait to read & hope this helps a little. I will post some of mine too, once the comments start rolling in. After all, this is supposed to be juicy stuff!

Literally Autism

2009-06-02T08:45:00.002-04:00

While working on a puzzle of the US:

Me: Topeka is the capital of what?
MM: Kansas

Me: Little rock is the capital of what?
MM: Are-Kansas
Me: Arkansas
MM: Are-Kansas
Me: No honey, for some reason they say Arkansas
MM: Are-Kansas

While making blueberry muffins:

Me: MM, you have to move so I can get in that cabinet
MM: I moved (as she turns 180 degrees on her step stool)
Me: You are so literal
MM: I not literal- what's literal?
Me: :::silence:::

Going...Going... Gone!

2009-05-31T08:13:00.005-04:00

Yes, she is back on planet MM. **sigh**

I had just made that post Thursday morning how good she was doing. We went to lunch at I.HOP. She was a little stimmy before we left, wanting her Nana. We went & picked her up for lunch. She was doing her directions over & over. She ordered her usual. She got upset cause the lady (not our usual waitress) brought her a small glass of milk. 5 minute meltdown. She then ate all of her bacon & that upset her. Another 5 minute meltdown, but got her to stop by giving her the chicken off my salad. She then was doing her driving directions the rest of the time, along with shoulder shrugs & finger flicking.

As an aside to the above part, at the I.HOP we were at, the booths have see through glass partitions. There was a couple on the other side who kept staring, rolling their eyes & making comments. My mom wouldn't let me say anything to them. I so wanted to. I was frustrated and I just hate people who stare. It is so sofa king rude! I found a cool new statement & I want to make it on a business card so I can hand them out:

Keep staring cause that will cure her Autism and then we can work on YOUR social skills.

Of course, I will add a website or some info about autism. I think a shirt for her would be cool too.

When she woke up Friday morning, she was gone. She kept saying over & over "Do I write from the top to the bottom or the bottom to the top? Top to the bottom" for over 45 minutes. I worked Friday & Saturday, so she was with Mom. She said she was hard to engage, doing lots of stims. She keeps asking to go to Dog.wood (her school). Even though I am doing my best to make a good routine for her, it is not the same. It has only been a little over a week and I feel like I made a mistake. I should have fought harder for her ESY. I know it is only a week & I need to give it time.

It is just so hard to have the clarity gone and her routine messed up all at the same time. It was fun while it lasted. Off to do the Super Family Sunday thing.

Keep on Keeping On

2009-05-28T08:16:00.002-04:00

She is continuing to do well & amaze. She transitioned back to her MDO (mother's day out) program easily. There were 2 girls there from last year that she remembered. She has the same teacher as well. They were amazed at how much she has grown & changed. I know I complained alot, but Ms. X really did do an overall great job in helping MM.

We finally got casted for new DAFOs yesterday. We are going to try a shorter one & see how it goes. I am excited & nervous at the same time. We also will (finally) be getting AFO socks! Woohoo! The ones with the big toe seperator. She has so much eczema from the DAFOs & I have tried all kinds of socks. Hopefully, the insurance will pay for them. If not, I will. We have to try.

Speaking of insurance, they are driving me crazy! They keep calling me about my hospitalization, wanting details. They are also driving me nuts cause we have had all of MMs appointments come up at once. As you all know, insurance is a pain! I am thankful I have it, thankful mine is pretty good, but boy is it work!

I've still got to get her some new glasses. I am not sure how I want to go about it. I might try the Zen.ni site. Or I just might go to Wal.marx, although I am trying to stay out of there.

My mom & I were talking about how she has been "here" & exploded the last few weeks. We think it is due to her poison whatever exposure. It has obviously sent her immune system into overdrive. Just like when she gets a fever & clears, this seems to be going on. We were joking saying we are going to keep her rashed up from now on. I so wish they could figure out what makes her clear with fever, etc. It would be nice, huh? In the mean time, I am just enjoying her. She is such a sweet kid.

And it Keeps Going!

2009-05-23T10:17:00.003-04:00

More bragging here!

We went to the eye doctor yesterday. She did AMAZING! She jumped up in the chair, told them she wanted to see the letters, not the shapes. She didn't even need me to sit in the chair with her. The only time she got upset was when they had to dilate her eyes. That wasn't a big deal. The problem was the nurse wouldn't listen to me about not restraining her. MM HATES to be restrained. If you tell her, prepare her & let her know what is coming, all I have to do is gently hold her hands. Once we got through that, it was only a 10 minute meltdown. She then went back & saw the doctor. He was pleased. Eyes are just a little worse, but he is hoping we will plateau & not need surgery. I will continue to do glasses as long as it works. Not patching for now either. Just drops every now & then for when she starts looking out the bottoms of her glasses. We will dilate for 3 days & see if it stops. If not, then we will have to do patching again.

Then we went to the dentist. We went to the dentist in town who specializes in SN. We were all prepared to go visit & make the appointment for sedation since she is so orally defensive. Well, Miss Thing went right back. They wanted to do a panorex of her teeth. I explained to her about the xray & how to do it. She stood & bit down & did great. We then went back, she jumped up in the dental chair. She hit it off right away with the hygienist. She asked what her name was, what tools she had, etc. The hygienist took the one pointer & MM said "You not gonna give MM a shot are you?". Hygienist said "No, I use this to point & count your teeth". MM opened up & let them count her teeth! Then the hygienist let her touch the brush, etc. MM LET her clean her teeth & paint on the fluoride treatment! The dentist then came in who is a very large, kind voiced man. She shook his hand, asked him to count her teeth. She only gagged a few times. Her teeth look great. We have taken immaculate care of them (his words). No cavities, but her mouth is way, way too small for all those teeth. He said unless she does some serious growing, we are looking at some major orthodontics. Even that news couldn't spoil my mood.

She got her first phone call yesterday from a friend at school. This is the conversation:

Me: Hello?
G: Is this MM's Mommy?
Me: Yes it is.
G: This is G. Can I please talk to MM?
Me: Sure. MM the phone is for you.
MM: Hello? Who is this?
G: It's me, G. What are you doing?
MM: I hanging out with my cousin. We playing.
G: I'm going to give your mommy my phone number so we can play this summer, okay?
MM: Sure. We can play. Mommy its for you, it G.
Me: Okay, G. I've got your phone number from the caller ID.
G: Okay, I will call in a couple days so I can play with her. I live in Knoxville.
Me: Okay, bye-bye.

Too cute! This is the little girl that was MM's peer buddy. We gave her our phone number for summer play date. I was excited she called right away. This little girl also cried cause MM wouldn't hug her the last day of school. She just doesn't hug too often. I got her to give high-fives to her though. MM loves to give high-fives as her way of hugging.

She has really had the best week ever!

How do you top that off?

Nana bought her a DS for her hand/eye coordination & cause she got all Es (which means excellent) on her report card. She picked the My Baby Girl game. She likes to be the mommy. And guess what? She has already figured out how to work the game! :-)

***There was only one downer at the dentist. There were a lot of people there who were foreign. A couple of women were speaking in an unrecognizable language & pointing & staring at MM's braces. I just wanted to scream at them That is RUDE in any language! You can talk all you want, just don't point & stare. I would have thought there would have been more SNK there, but not when we went. It was all typical kids. Note to self, get first appointment of day from now on.***

Best Days EVER!

2009-05-21T20:20:00.006-04:00

Well, the title might be an exaggeration, but no lie. Today was one of the BEST DAYS EVER in my life since I had MM.

Why?

Please hang with me while I brag.

My amazing daughter. The one who was born premature. The one who has cerebral palsy. The one who they said would never walk. The one who they then said would never walk unassisted. The one who they diagnosed as having autism spectrum disorder. The one who wouldn't be able to be mainstreamed until third grade. Yeah, that girl.

She completed & graduated from regular ed kindergarten. Not only did she pass, she superseded all of their expectations. She did it! I just want to jump up & down & scream with my fists in the air:

HEY WORLD! SHE DID IT! WE DID IT!

She also got an award at the assembly for being the Super Site Word reader of all of kindergarten. She was very proud of herself. Her daddy went & watched her get the award- mommy had to work. A couple of her classmates got citizen awards for always going the extra mile & helping her. She loves those two girls & tells me so along with that they are her friends. They love her. The school has instilled such a sense of community in those children & really take care of MM, encourage MM and make sure she does what they are doing & gets where they are going. Her teacher made an amazing video of the year that she gave a DVD to each student. I bawled my eyes out watching it. My baby is a big girl now. She is going on to regular ed first grade with all of her supports.

This day has confirmed our choices. We made the right one for her & us to mainstream her from the beginning. The children are used to her & know how she is & they love her just the same.

Her second tooth fell out yesterday (finally) after the permanent one has been in, so the tooth fairy came last night. She only left a dollar this time. I am glad cause we go to the dentist for the first time tomorrow. We also go to the eye specialist in the morning.

I am feeling better. I worked all day yesterday & part of today. I leave early on Thursdays to take her to therapy. She had a great OT session. She cut, glued, colored & wrote her name very legibly. She interacted & made astonishing eye contact. She had water therapy. She moved her arms & her legs in a true swimming motion for 5 strokes. First time ever! Her therapist was jumping up & down, cheering. Of course, this scared MM and she didn't do it again.

While I was in the hospital for the week, MM & Daddy came up with a wonderful surprise. Again the kid with all of the above mentioned stuff has learned to pedal a regular bike with training wheels. Wooohoooooo! Watched her do it for the first time Tuesday. Yes, I was bawling then.

She has told me a million times today how much she loves me & daddy & nana & pop-pop.

I got a great evaluation at work which means a great raise. I got a guardian angel award at work for giving good care to someone. It is a very special recognition to get & not very many are given out.

It has been a good week. I know this is disjointed, but I just had to share my great news. This is one of the best days that I will never forget. Honestly, ranks right up there in my top 5 of my life like the day she was born, getting married, etc.

With this, I will leave the lyrics to the song that the teacher used on the DVD. I had never heard it before & I LOVE it. I am going to download it (even if it is by that kook R.K.E.L.L.Y. )

"The World's Greatest"
I am a mountain
I am a tall tree
Oh, I am a swift wind
Sweepin' the country
I am a river
Down in the valley
Oh, I am a vision
And I can see clearly
If anybody asks you who I am
Just stand up tall look 'em in the Face and say

[Chorus]
I'm that star up in the sky
I'm that mountain peak up high
Hey, I made it
I'm the worlds greatest
And I'm that little bit of hope
When my backs against the ropes
I can feel it mmm
I'm the worlds greatest

I am a giant
I am an eagle
I am a lion
Down in the jungle
I am a marchin' band
I am the people
I am a helpin' hand
And I am a hero
If anybody asks u who I am
Just stand up tall look 'em in the Face and say

[Chorus]
I'm that star up in the sky
I'm that mountain peak up high
I made it
I'm the worlds greatest
And I'm that little bit of hope
When my backs against the ropes
I can feel it
I'm the worlds greatest

In the ring of life I'll reign love
(I will reign)
And the world will notice a king
(Oh Yeah)
When all is darkest, I'll shine a light
(Shine a light)
And use a success you'll find in me
(Me)

[Chorus]
I'm that star up in the sky
I'm that mountain peak up high
Hey, I made it
I'm the world's greatest
And I'm that little bit of hope
When my back's against the ropes
I can feel it
I'm the world's greatest
I'm that star up in the sky
I'm that mountain peak up high
Hey, I made it
I'm the world's greatest
And I'm that little bit of hope
When my back's against the ropes
I can feel it
I'm the world's greatest
I'm that star up in the sky
I'm that mountain peak up high
Hey, I made it
I'm the world's greatest
And I'm that little bit of hope
When my back's against the ropes
I can feel it
I'm the world's greatest
[*]It's the greatest
Can you feel it
It's the greatest
Can you feel it[Repeat * while:]
I saw the light
At the end of a tunnel
Believe in the pot of gold
At the end of the rainbow
And faith was right there
To pull me through, yeah
Used to be locked doors
Now I can just walk on through
Hey, uh, hey, hey, hey
It's the greatest
I'm that star up in the sky
I'm that star up in the sky
I'm that mountain peak up high
Hey, I made it
I'm the world's greatest
And I'm that little bit of hope
When my back's against the ropes
I can feel it
I'm the world's greatest

MM, you have made it!

Sweetie

2009-05-16T07:44:00.005-04:00

This morning when I came downstairs:

MM: "Mom, I am so glad you are still here"
Me: "Me too"
MM: "I am so glad to see you. Are you better yet? I love you Mommy. Do you love me?"
Me: "Of course I love you & yes, I am getting better"

This was repeated about 20 times already this morning.

That is the best medicine/healing power of all.

It is so hard for her to have me disappear. She wanted to go to Nana's yesterday, but cried cause she kept saying "Mommy won't be here" implying I was going away again. I hope this anxiety resides for her soon & she realizes it was just a temporary leave. Thanks for all the well wishes.

One more thing in regards to MM. Her poor little legs need a desperate work out. She hasn't been to therapy in two weeks cause I have been in the hospital. Her lower legs almost look atrophied. Her daddy tries hard, but doesn't do all the "extras" like I do. Her feet are so down & inward and keep having spasms. This weekend is going to be lower leg boot camp for her. She is not going to like it. We were also supposed to go for a new casting to get new DAFOs. Hopefully they can get us in this week. She needs new ones quickly.

Poison SOMETHING!

2009-05-15T15:02:00.001-04:00

We don't know what it was/is. We all somehow got exposed to either pesticides, poison ivy, poison oak or poison sumac. We have all had rashes & I ended up with a severe allergic reaction, spending nearly a week in the hospital. Needless to say, this hasn't been fun. MM is really out of sorts, from the rash & my disappearance. Poor DH has been trying to do it all & realizes how hard it is. I hope to be on the mend & get everyone back in their routine quickly. Wish us luck. I am so sick of bad things happening over here.

Do I whine too much?

2009-04-30T15:30:00.004-04:00

I don't know if I do on this blog.

I sometimes look at all the other blogs & see how much everyone writes about sunshine & rainbows. Don't get me wrong. We have sunshine & rainbows here. At times, they are just few & far between. After all this time, I guess I am still: bitter, angry, shocked, sad, depressed, etc. I have tried some counseling & of course the lovely meds. I guess it isn't enough. I still go through these long spells of dreary sadness.

Right now is one of those times. I feel overwhelmed by my life. It seems we can't get ahead no matter how much time I spend running. I hate that I feel as if I always have to clarify myself to others with statements like "I AM very thankful she is doing well, but...". She is doing amazing & beyond so many others. I feel guilty cause she isn't "disabled enough" at times amongst our disabled friends. I worry so much about the past (which I know I can't change), the here & now (am I doing enough, will it ever be good enough?) and the future (what will it be?). I can't seem to forgive myself for what has happened to my precious daughter, even though I did not solely cause it.

I mostly blog about the bad times cause this is where I "talk" it out, get it off my chest. This is where I come to stomp my feet, pout and scream about things. I guess I just am not a blogger who wants to write about how wonderful it is to live with ASD/CP all the time. It can be rewarding, it can make me feel blessed beyond all others. It also can be hardwork, tedious, heartbreaking and unfair.

I apologize if I am often a downer.
It's my blog and I'll cry if I want to.

Literally Autism

2009-04-29T19:05:00.002-04:00

MM's new fascination is directions, maps, countries, continents, etc. She always asks "where is this, where is that". We were getting dressed after her bath.

MM: Mommy, where is Argentina?
Me: In South America.
MM: Mommy, where is China?
Me: In Asia
MM: Mommy, where is Antarctica?
Me: Meghatron, I think we need to get you a worl.d atl.as or a globe. Do you know what a globe is?
MM: It's a sphere. (with duh intonation, like why are YOU asking me this?)

Me: stunned silence, then a chuckle

Crisis Semi-averted

2009-04-28T20:45:00.003-04:00

The IEP went okay. The area that I thought they would bulk on the most they did not. MM will still be restrained on a short bus. They realized that she can't step up on a regular bus alone (DUH), can't be properly supported on a seat in a regular bus (DUH) and doesn't have the trunk strength or good enough protective reflexes to keep her upright with sharp turns, etc or if there was a crash (DUH). I am quite sure we will battle this again next year, but for now, score one for us. I don't know why they make you jump through hoops for something as simple as her safety.

They denied us ESY. Even though the teacher recommended it, they said she did not need it educationally. I still have time to think on this one. The summer program they have offered the last few years was okay, but not great. (The only great thing was the teacher. It didn't offer enough to really help her and it was in the worst part of town. Seriously, a crack dealer was on the corner there in the mornings) We are going to send her back to a mother's day out (MDO) group that she went to last year. The lady that runs the program actually came from the special ed preschool she went to. They take all ages in the summer & do lots of fun things. They also all did a wonderful job caring for MM last year & adapting to her needs. Honestly, they did better than her teacher this year, IMO. I like the fact that she won't be tied down to school per say & we will see how she does. She can go to the MDO when we want or we can not send her. With ESY, they take attendance. If she does not do well when school starts, then I doubt they will deny it next year.

I still can't figure them out. One would think after all this time (3 years in the county) I would have some understanding. I don't. The things I think they will give a hard time about, they don't. At the annual IEP, the bus was a huge battle we were fighting. They just wanted her on regular transportation, no supports or anything. They did a total 180 with that. The ESY I thought was a slam dunk. Wrong!

Thank you for all your kind words of support & great advice.

One more thing. If you get a chance, can you send up a prayer for DH. We had to take him to the doctor today. He had to have an EKG & lab work. He has been having weird spells. They don't think it is his heart. He didn't see our regular doctor either. The fill-in seems to think it is stress/anxiety. I am hoping that is all it is too. I think he has needed help for a long time & is now finally at his breaking point. They gave him a script too, so he is joining the xanax for lunch bunch. Please pray it is something simple. I just can't take any more bad news. I really can't (for i too am beyond my breaking point. i think it is why i can't get well myself).

Crud

2009-04-26T20:16:00.003-04:00

That is how I feel like. Once again, the rotten sinuses have gotten the best of me & moved on down into my chest flaring the old asthma. Yuck.

We have our IEP on Tuesday morning to discuss the ESY & the bussing issues. I hope we can come to an easy resolution. I got some great advice from some wonderful people in addition to a letter from the doctor. Can't see how they can turn down the ESY. Her teacher said she needed summer school at the parent-teacher conference a few weeks ago. The bus is another story. Yuckier.

MM has been really out of sorts. Some of her old "ticks" are back as well as the new ones going strong. Feeling poorly, I am out of patience. I hate that, but I feel trapped by her ASD. This weekend has just been a bummer for me. The weather was nice, actually too hot when you have a cold type thing. I hate that I feel like this. I don't want to be trapped by this. I just need to figure out what is going on with her & help to quell the stims. Yuckiest.

Btw, we ran to Tar.get the afternoon. I heard something that made me so upset that tears started to well. It put things in perspective for me. A cute little girl, probably about 4 was saying "who is going to carry me & hug me now?". Her mother replied to her "just shut up. you are driving me crazy. you don't need to be loved on all the time". WHAT?!? It was all I could do to not tell her to thank her lucky stars her daughter was asking to be loved on and wanting to interact with her. She had a wonderful, healthy, neurotypical child. I wish my child would ask me for that instead of asking for directions for the 5 millionth time of the day. DH was with me, so I bit my tongue.

Yuckiest beyond yuck.

Awesome Crowns for ABR

2009-04-25T19:51:00.002-04:00

Alright. I have a blog I have followed for quite some time. The owner of this blog is Melanie. (her button is the better than normal one on the side) She is a super cool Mom with a huge age range of kiddos, the smallest who has SN. Daniel is one of the cutest boys on the block! Anyhoo, they do some totally cool alternative therapy called ABR (google it. I am lazy today). They make some awesome crowns to supplement for the ABR. You can actually win a set of these crowns right now on Her Blog!

Check it out! If you don't win, how about ordering a crown for your kiddo? I did not get one ordered in time for Meghatron's birthday this year. She even has a cool Mother's Day crown right now.

What are you waiting for? Go on... go enter! BUT be forewarned... I'M GONNA WIN! I have to win something!

No Coincidences

2009-04-12T15:33:00.005-04:00

We had a yard sale on Friday & Saturday. Not so great weather. Friday we got rained out till about 0930, Saturday was muddy, cloudy & got cool. We persevered & got it done. We made quite a bit of money (it was our household & my parents). It was so relieving, purging of clutter & making money for it.

As we were selling, a very kind lady stopped. We struck up a conversation. She gave me a business card cause she is a chiropractor. I asked her about treating children with ASD. She began to tell me the story of a boy, now in his teens, who was non-verbal when he started recently coming to her. Not only did he have ASD, but he had a stroke in utero & has mild CP as well. (Sound familiar?) He now is talking. She does adjustments as well as practices herbs, vitamins, etc. We talked about supplements. I am going to give her a try & see if we have any big break throughs with MM. She also told me about a lady in her 40s who she treats. She has Asperger's & talks easily to the doctor, as she has been coming to her for years. She has a college degree, a job & lives on her own. I gave her my phone number & email address. She said she would speak with the lady & would hope that she could be a mentor for MM.

I am very excited because she has already emailed me. She is actually eager to communicate via email & meet in person. She is willing to answer my questions about living with ASD. She also wrote this lovely comment:

I just want to tell you that doctor's aren't always completely right because I think that the power of the human will and the human spirit can defy a diagnosis and I don't think that anyone can be totally accurate in their assessment of what another can accomplish.

Wow, huh? She sounds pretty amazing & I am very excited to communicate with/meet her. This gives me such hope. It is just what I needed with the impending IEP coming up. Hope.

Having this sale was no coincidence. The Man upstairs set me the good doctor to deliver me hope. Thank you, God.

*btw, the doctor bought my train table & Thomas stuff for kids to play with in her waiting room. really cool.*

6 Already?

2009-04-09T07:50:00.009-04:00

I can't believe it. As I am typing this, the Meghatron has turned 6 today. She has had a great day, enjoying her favorite pizza, cake & presents.

In some ways, time has flown by so quickly. I want to slow things down. She is growing up way too fast, getting so big. Savor each moment, like yesterday. We met one of our dear friends at a restaurant. They brought MM an ice cream with a candle. She blew out the candle. I asked her if she made a wish. She said, "Yes, I wished a happy birthday to me". We all laughed. She laughed cause we laughed, even if it was her canned laughter. (I am proud that she is attempting to pick up on social cues)

In other ways, time has moved so slowly. I can remember the day she was born like it was yesterday. I remember her time in NICU and how raw & numb I felt. I remember the pain my heart felt when she got diagnosed with CP then ASD. I can't forget all the hundreds of hours we have spent in therapy, doing therapy, going to & from therapy. For me, her life has been constantly measured, scrutinized every few months. We measure moments by "inch stones, not milestones" as one of the fellow bloggers says. It is at these times that her life seems to be moving so slowly.

Although this hasn't been the six years I envisioned, it has been wonderful. She is growing and making wonderful progress. Her brains, humor, charm & looks are incomparable. I love her so much & can't wait to see what the next 6 years will bring.

Happy Birthday, cutie!

A GOLDEN TICKET

2009-04-06T18:27:00.002-04:00

Well, not really a golden ticket, but an egg. Yes, a golden egg. I know you are wondering why I am posting about a golden egg. Of course it is cause Easter is coming up. But a golden egg... so special.

My sweet girl got to participate in an egg hunt on Saturday. They divided up the groups. They let us out the door first so she wouldn't get trample by the others. She slowly went about her business, having me help her look for eggs. As she would look, some of her eggs would fall out. I tried to get them as best as I can, but the other children kept taking them. The other children were running all over, snatching eggs as fast as they could. We moved off to the far side of the hunt, finding a quiet area with some eggs. She found a soccer ball egg, she found a pink egg, she found a purple egg. Then, off to the side in the grass, she saw a sparkle. She reached down & grabbed it. It was a large golden egg. She remembered the leader saying you wanted to find a golden egg before sending them out on the hunt. What did the egg mean?

She won a BIKE! The grand prize at the hunt. I was so proud of her & so excited for her that I started to cry when they told us what she won. She kept saying over & over "I found the golden egg, got a bike!". She can't ride it. She sits on it & we push her around. She is so happy to have a typical bike. The church was very excited to have a SNK win the egg hunt. It made their day, although sometimes people mean well but say some weird things. She will have her photo up at their church.

So, the moral of this story is slow & steady DOES win the race!

***have pics to post but can't due to the viral illness of my lappy****

Alrighty Then...

2009-04-05T19:52:00.005-04:00

Does THIS mean that I won't have to fight, argue, cry, etc to keep my child on the appropriate bus & get her ESY this year? We have another IEP meeting on the 28th to discuss these things. I can't wait to hear what they have to say. I am getting well armed with some great advice from some super advocates. Anyone else having any advice, please let me know. You guys are the best!

(An aside here- I know I never posted the update from the meeting earlier this year. One of the crazy things they want to do is put her on a regular ed bus. A child who has CP & wears DAFOs along with ASD who is beyond easily distractable. They are such idiots, I swear. I am prepared to take this to the media if I have to, especially with it being Autism Awareness Month & the recent problems our county has had with ASD kids & lawsuits being filed against the school system due to major compromises in safety. I need to post all about this when I get a chance. Don't know when I will though with the lappy being broken)

My computer is very, very sick right now (I stole my mom's lappy). I don't know what is wrong with it. I have done everything I know & it looks like it will be going to the ge.ek squ.ad this week.

APRIL IS AUTISM AWARENESS MONTH 2009

2009-04-01T17:06:00.002-04:00

Her Temper-ature

2009-03-28T12:26:00.002-04:00

As you have all read, MM has an undiagnosed auto immune disorder. She often spikes fevers & has mysterious rashes. As she gets older, it is getting harder & harder to take her temperature. She loses her temper when we do it. Due to her sensory stuff, she won't take an oral temp. She fights like mad when you do an axillary (armpit) & the ear one is hardly ever accurate. What's a mom to do?

Well, Christine has another contest that will help solve my problem. Go check out her blog & enter her contest for a Temporal Scanner.

I need to win this MORE than I need those cleaning supplies!

More Spring Cleaning

2009-03-23T14:26:00.002-04:00

I found another giveaway with more cleaning stuff. It has arm & hammer baking soda stuff. So many uses, not a ton of cleaning products & much easier on the environment.

WooHoo. Hope I win this too!

Now, where is the contest I can enter to get a life or at least something to help my OCD about cleaning?

Spring Cleaning

2009-03-23T13:57:00.003-04:00

I so need to get moving on this. It will be summer before I ever get it done. Maybe spring cleaning will get rid of all of our illnesses too.

Speaking of cleaning, one of my favorite blogs is having a giveaway. Christine is giving away a cool Win.dex product. Go check it out.

I hope I win this. I could use some good news over here!

AND I need a life, getting excited about the potential of winning a cleaning product!

Making a Knot & Hanging On

2009-03-22T20:31:00.007-04:00

Yes, we are still here.

Recovery for both of us has been very difficult.

I have been on antibiotics & steriods just about non-stop since my surgery. As soon as I finish a round of antibiotics, I get another infection within 2-3 days. I have to take the prednisone or else I will have an allergic reaction to the one of the few antibiotics I can take (I am only mildly allergic to this one, versus severely allergic to the others). It is just like last time. I am worried. I might have to have another surgery cause it will not drain like it should. I have been at the doctor every 10 days since the my 7 day post-op follow up. Add up all those co-pays plus meds!

MM went back to school for a few days. She got sick within a few days of being back. She was on spring break this last week & has had a fever nearly the whole time. We are going back to the doctor tomorrow. I think she might have an ear infection now on top of her barky, croupy cough. She has been out of sorts, not "here" and EXTREMELY crabby.

We are still looking for that Give Me a Break line.

P.S. don't know if any of you are addicted to Post Secret like I am, but I saw this post card today. my heart felt so much sorrow cause it could have been sent in by my DH. It wasn't cause he doesn't know about post secret, but still...

Drinking Again!

2009-02-28T07:40:00.003-05:00

I don't want to jinx things here. She finally started drinking yesterday. She actually drank a whole bottle of water. She ate a 1/2 of cheeseburger from Mc.Don.alds. as well. She **might** be doing better.

Thanks for all the well wishes. To the anon who posted about her child, thank you. It made me feel better to know that she was doing "normal" things for a child with sensory stuff.

Another problem we have now is pooping, actually lack of. The meds have really made it hard on her & with her CP, she has only pooped twice (tmi here- tiny little rabbit turds) with suppositories in the last 10 days. I will have to give her another this morning :-P If things don't get moving, I will have to take her to our pediatrician. I hope all the water she drank will get in there & help.

ROUGH!

2009-02-23T21:33:00.001-05:00

We are quiet because her recovery has been very, very, very difficult. I will update when I can. She is a not drinking, not eating, not pooping, too much pain medicine needed, not talking mess. My heart is breaking for her! The autism makes this a million times harder. She cant tell you she's hurting, so she hurts herself or hit me. Please pray. Thanks.

Monday Movies & on the Mend

2009-02-16T14:28:00.003-05:00

I am starting to feel semi-human again. This time was much more painful than the last, I guess cause I had a septal repair as well. I am doing okay. Taking less pain meds each day, psyching myself up for MM's surgery on Thursday & the hospital stay.

I have been able to upload a few videos that I had promised.

First up, the loose tooth. Please excuse the cinnamon roll all over her face!

Up next, the Lost Tooth

That little voice she does where she says "I lost a tooth" is one of her scripted voices.

Hope you enjoyed. Thanks for all the well wishes & warm thoughts. I will be back when I can and am not so cracked out on vicoden!

First Up Tomorrow

2009-02-10T16:36:00.003-05:00

Well, it is with much dread that I am on deck for tomorrow.

I am sure I will be MIA for a few days.

I am not looking forward to this at all. I am trying to be brave for MM. I am trying to be positive & optimistic for myself.

Please send me vibes/prayers, whatever you do. I am not so much worried about the surgery as I am getting infected like last time. Although, the pain & burning that happens isn't too appealing either!

And yes, I still need to get around to posting about the IEP. BLAH!

Tooth Fairy

2009-02-05T05:45:00.003-05:00

Well, she lost that loose tooth on Tuesday. I was working. DH handled it like a pro. It came out just before bedtime while they were brushing her teeth. He told her the toothfairy was already booked up for the night so I could participate.

She made a special envelope yesterday & we put the tooth in it.

I got to be the tooth fairy last night. I printed off a special letter & put her money in a box.

Yes, we did give her $10 cause for some reason that is what she kept saying she would get. It IS her first tooth! Next tooth will be less. What is the going rate for teeth these days?

I am proud & sad all in one. She's growing up too fast!

Tonsils be Gone!

2009-01-31T08:14:00.004-05:00

Well, just as I thought, MM will be having her tonsils removed along with adenoids & possible tubes put back in her ears. I am not too worried about the surgery. We will have to stay over night though, possibly two nights they said. That will be rough. Surgery, then her not in her own environment!

I LOVED the new doc, btw! He had actually read her chart before he came in. I was all ready to plead my case. None of that needed. He said they would probably have to come out, looked in her throat for a half second, said "Oh yeah, they need to come out". He then said most kids go home, but she will have to stay due to her ASD & CP. He is most concerned cause she can't tell you if she is hurting or something is wrong. Also, he wants her to have IV antibiotics after due to her auto immune issues. WOW. Okay. Then he scheduled it for Feb 19. That is before I could even GET IN with the ENT we used in the past. WOWEE-WOW!

Now, the bad news is my surgery is the week before on the 11th. We are going to have a super hectic mid February. Also, we will be funding two different ENTs family vacations this year! LOL!

I am still planning on giving the IEP update, but it will take a lot of time to type. I need to get housework done this morning.

Not to keep you in suspense

2009-01-27T10:48:00.003-05:00

IEP went okay, not great, just okay. There are a few things I am not very happy about. We will be having another meeting. I will update later. I need to decompress. I hate these damn meetings. I hate having to go through this. I want to scream, cry & stomp my feet that this isn't fair.

Manic Monday

2009-01-26T08:15:00.006-05:00

I have a lot going on.

First, MM goes to the ENT on Friday. I am sure she will have to have those monstrosities known as tonsils removed. Poor thing is still not eating great, nose running constantly & lots of coughing. We are almost done with the antibiotics & I am sure by next week she will have the reoccurring infection. (Not feeling very optimistic this morn)

Tomorrow is the rescheduled IEP. Need I say more? Those yahoos still did not even give me the evals or reports! Thanks for all the advice you guys have provided. I am reading it & taking it all in, evening adding it to my notes for the meeting. I am going to give them the benefit of the doubt, as I try to do, but am sure I will be upset as usual. (again with the pessimistic view)

They scheduled MY sinus surgery for Feb 11. If I do not have it done then, I will have to start all over & have a different doc do it. The wonderful doc I found is relocating back to where she came from. Sux for me! It really has taken me a long time to build back up the courage to go & make the decision to have this done. The last time I had the surgery, in 2000, I got septic & almost died. YEAH- good times there. I need this done though. It will hopefully help my blood pressure, headaches & just generally improve my life so I don't have to deal with chronic sinusitis all the time.

I have to get MM's other appointments scheduled or rescheduled (eye dr, developmental specialist, 6 yr check up, etc.).

BIG news here too. My baby has a very wiggly bottom tooth. I will try to upload the video of it. I am sad & glad for she growing up.

We (DH & I) are going through an autism sux phase right now too. We both are in a bit of a funk cause these illnesses have really set her back. Lots of regression going on, has gone on. It is not just he autism stuff either. Her legs are so stiff & she lost some of her good gross motor gains. He, who is usually so positive, is just as anxiety ridden as I. This is so darn hard.

Did I mention I had my annual girlie check up last week? That will have to be for another post. I just can't think about it right now.

I know so many of you here in blogger land are going through just as much & many much worse than we. Where can we get in the "Give Us an Effing Break Line"?

(tried to cheer up by adding the valentine stuff to the blog. I LOVE valentine's day. it is such a cute, made up holiday. even dressed the girlie in valentine's attire this morn. I know it is early, but how can LOVE not make you smile?)

Pediatrician Update

2009-01-20T14:33:00.003-05:00

Took her back in. Her tonsils are HUGE! They reswabbed her & now she has strep AGAIN! We are waiting to here from the ENT either this afternoon or tomorrow. They want to get us in ASAP cause they need to come out more than likely. I bet they will put the tubes back in as well. Poor thing, she never complains about pain. We just have to guess cause she still won't eat, feverish on & off and just not herself.

For the most part, we have been pretty fortunate with her autoimmune issues. Now, it seems like she is sick every time we turn around. I hope that this will help cut down on some of the infections. I also wonder if her being in constant stressed out mode at school isn't contributing to this.

Thanks for all the prayers. Will keep you posted.

SNOW DAY!

2009-01-20T09:47:00.002-05:00

IEP cancelled cause, in the south here, a smidgen of snow calls for the closing of schools. God intervened & took care of my dilema about the no reports. Once again, a reminder that I need to "let go & let God".

About the reports not being done:
One of my IRL friends brought up a great point (can I add she has a special ed degree & is an assistant principal) that what are they going to do on Tuesday? Were they all going to run in there first thing this morning & bombard her to get the reports done before 10:15? I am curious to that answer too. It will definitely be brought up as part of the request for records, they need to let me see them part of the law.

Thanks so much for all of your support! I have stressed myself sick, literally. MM is still under the weather & we are heading back to the pediatrician.
Now, I just have to wait for the reschedule.

Need IEP Advice/Help Badly!

2009-01-16T20:55:00.002-05:00

I sent an email this past Monday, asking MM's case manager for the reports before the IEP which is Tuesday. There is no school Monday due to MLK day. MM is was very ill today. I sent an email asking if I could pick them up today. She sent me an email telling me they wouldn't be done since MM was absent today and they will be available for review at the meeting. WTF? They were waiting till the last possible minute to get them done? What would you do? HELP! What are my rights here?

I am so pi$$ed off right now! I can't see straight! I just got to the email this evening since MM has been so ill!

P.S. An aside here, her absence will be excused cause children didn't have to attend today due to the single digit temps. They had no clue she would be absent due to illness.

It's the Most Awful Time of the Year

2009-01-16T10:13:00.004-05:00

Yep, it is time for the Annual IEP. We have it on Tuesday @ 10 am.

Am I dreading it? Yep. Am I worried? Yep. Am I busy getting my arguments ready? Yep. If any one has any suggestions for me or ideas on goals to add, please feel free to post in the comments. Many of you know the trials & tribulations we are having with eating, bathroom & coats as well as just general school stuff.

To top it off, MM woke up with a high fever today. I am waiting to see what declares itself. Is it strep again or another UTI?

To say I am stressed is an understatement.

Therapy Waiting Room

2009-01-08T19:15:00.010-05:00

One of my first pieces of advice is in regards to the Therapy Waiting Room.

At first, you will dread the room. It is where you first make your entrance and see all of "those children". The ones that are in desperate need of help. You will sit there, holding your little one on your lap and anxiously await your child's session. You go back & watch as they evaluate the child. Then you get all the info & find out you will be making many a trip back to that waiting room. When you first start therapy you want to watch everything they do with your child. You want to observe so you can duplicate the toys, exercises, equipment needed to help your child. I don't know about any of you, but I took notes in my little notebook. I would also try my best not to intervene & let her "get out of" her exercises. You will learn to trust the therapist with your little one & see they are capable. Then, one day, the therapist will suggest you sit out in the WAITING ROOM while your child gets therapized (my little word for it).

WHAT? NO WAY! I NEED TO BE THERE!

That is what I thought. Then, I found out she did a little better without me there. She learned to not be dependent on me for prompts. She got comfortable & came to love those special people.

And there I sat in that WAITING ROOM.

Slowly, my eyes were opened. "Those children" were just like MM. They needed the extra help to function in this world. "Those children" had mommies & daddies just like us. They were just as nervous, anxious, unsure of the rest of the day, let alone the future. There were also the parents who I looked up to. They were the ones who had an older child. They had been down the road, making so many trips. They knew where most of the bumps & roadblocks were. They appeared to be able to navigate the new potholes that crept up with grace & finesse.

I actually began to enjoy my time in the waiting room.

Let yourself make friends with the other parents of SNKs in the Waiting Room. They are valuable resources. Sitting out in the waiting room while your child gets therapy is wonderful. First, let them take care of your child for the 30-45 minute session so you get some "down" time. You don't have to be back there for every session. If I don't feel like talking to anyone, I bring my laptop and am able to get a lot of things done. Second, talking to the moms in the waiting room teaches you so much. They have been there, done that & have all the tricks to getting you access to local services. Third, it is very therapeutic for you. I find it to be a mini psychotherapy group many a time. They are in the same boat as you and REALLY understand.

It is that camaraderie I have come to enjoy, even look forward, as I take her to therapy week after week.

My Contribution

2009-01-08T14:56:00.002-05:00

In addition to the daily going ons of our life & all the things that go along with having a SNK, I am going to try to add something to this blog. I am going to TRY to talk about our therapies, our routines, things we do to make life livable with CP & ASD. I am hoping to help others out there on the road or those just beginning the road. My blog traffic has picked up quite a bit. I don't just want to be BP & M-ing (b!tch, p!$$ & moan) about our life. I feel like with all the experiences we have encountered (0r endured) over these last almost 6 years I might be of more assistance to others. It is actually more than 6 years cause I might also actually blog about our experiences with pregnancy as well. We have had a long hard journey & there should be some better way to share. Hope you hang around.

Love-Hate

2009-01-04T19:46:00.004-05:00

I love it when my sister comes. I hate it when my sister comes. HUH??? Yes, you read that correctly.

I love to see my sister. She is so funny. We laugh a lot when she is here. I try to have as good a time as possible. I don't get to see her very often cause she lives about 9 hours away. She is so patient & understanding, continually making the trek down here since it is hard for us to go any where.

I hate when she comes cause MM's disabilities become a giant elephant wearing a strobe light in a room that is only 200 square feet. MM does not like my nephew, the K-man. He is pure boy- rambunctious, zealous & happy. For some reason, he stresses her out. This, along with people being in the house (did I mention my sis has to stay at a hotel as well which also adds the money factor in) for visits, the change in routine, is too much for her. She spends a lot of the time crying, hiding or stimming. It saddens me so. I tried to do all the tricks for her. It doesn't really work. She is just a mess the whole time. She doesn't eat well, sleep well or function.

It breaks me down. I get stressed myself. DH gets upset which also adds to the stress level. I don't know how to help her. I realize that getting her out of her comfort zone is nothing but chaos for her. I realize that this (autism) is FOR REAL and this is not EVER going away. I also tear up as I share in the joy of my nephew and all his neurotypicalness (is that a word?). He is almost 2 years younger than MM and has surpassed her in many ways. He can run endlessly, he can write & draw pictures, he feeds himself, he gets in & out of the car on his own, etc, etc. The second he sees you, he looks at you and starts running. He jumps into your arms & gives the biggest hug that makes you feel all warm inside. He wears you down (in a good way) with his endless questions, endless pointing, endless calling of your name for attention. He WANTS to play with you, talk to you, look at you, just be there. Imagine that. He wants to play & interact with MM so bad. He tried so hard to engage her, but she was having none of it. It was so cool & so heartbreaking at the same time.

I am so used to MM with all her little quirks and how far behind she is that I "forget" what a "normal" child is like. I guess I don't really "forget", I just have never experienced "normal" from a parenting standpoint.

It makes me feel trapped. She doesn't like to go anywhere. She doesn't like anyone coming here. DH doesn't get that much time off from his work. We have no one besides my mom that could really stay with her if we wanted to go on a vacation or just to visit family. I want to scream & cry that this isn't fair. It's not like I want to go to Vegas or Jamaica. I just want to spend a few days with my family & enjoy it. It is so much work & so stressful.

She seemed to do a little better this visit than last. One can only hope that each time she will adjust & get better.

New Year's Eve

2008-12-31T08:16:00.002-05:00

I obviously changed the blog. I even took down the tree last night, but the whole time I could hear my grandmother & mother in my head talking of bad luck. LOL. I was thinking then that maybe if I change this my luck will change! Whatever! I don't believe in those superstitions anyways.

Today is my sister's birthday. She is coming to visit. That is her birthday present from my mom. I am excited to see her. I am also worried how stressful it is going to be. MM gets so stressed out by my nephew. I don't know why she doesn't like him. He will be 4 in January and is really cute & funny. He has a wonderful zest for life, excited by everything. I guess he is too loud for her. Please send up a little prayer that she enjoys their visit. It is much too difficult for us to go anyhwere. It is so kind of my sister to come here AGAIN. I just want to have a nice visit.

Wishing you all much health, wealth & happiness in the new year. 2009 HAS to be better than 2008, right?

Please

2008-12-29T07:00:00.000-05:00

Direct your attention to the poll on the right. Thank you!

Merry Christmas!

2008-12-24T20:27:00.002-05:00

Hope you all have a wonderful, stress free family holiday. It's raining, thundering & lightning here. Ah, gotta love Christmas in Dixie! I can't be happier cause I have seen enough snow to last me a life time. Those of you that are buried in the snow, I felt your pain many a time.

Check out this poem posted by a fellow mommy autism blogger.

Off to bed now, for I can't wait to see the little one's face in the morn.

Feeling Grinchy

2008-12-23T20:08:00.003-05:00

It is hard to have Christmas cheer when you have to work 12 hour shifts the 2 days before & the weekend after. I only have Christmas day off. I had to run around like a fool yesterday trying to get everything done. This is the first year MM is really into the Holidays, I mean REALLY into it. She has watched the Grinch more times than I can count along with Charlie Brown & Shrek the Halls. I keep asking her if we are "Knoxes" since we live in Knoxville cause the Who's in Whoville. LOL
It is going to suck missing out on all the little things she wants to do the eve. We bought a plate for Santa's cookies, which we also made yesterday. Did you know Santa loves sparkles (sprinkles)? I have never seen a cookie with so many "sparkles" in all my life- nearly half a bottle! She will set them out with her Dad along with a glass of milk. She bought carrots yesterday, the ones with the green stuff on them. She wants to set those out for Rudolf & his friends (which she then goes on to name every time). She has the Reindeer Mix of oats & sparkles (glitter) to put out on the lawn so he sees our house. I will miss evening pajamas. I will miss pulling off the last paper link on the bell she made, counting down how many sleeps till Christmas. I will miss out on her excitement cause I will be working. She will be in bed with visions of sugar plums dancing in her head before I get home.

All of this has put me in a really foul mood. Why can't I be a SAHM? Boohoohoo

Should I or Shouldn't I?

2008-12-19T07:43:00.002-05:00

I know I really have a lot on my plate. I also work full time on top of doing all the extras we have to do with MM. However, when I opened my email this morning, there was a message from autism speaks. They need a chapter advocate in this area to help get the ball rolling in the new congressional session for insurance. As you can tell, I am very passionate about ASD & fighting insurance has been something I have become very good at. I think that things need to be fair cause the people who are on Medicaid (actually TennCare) here get all kinds of services. I, who work & am a state employee, have to pay out the nose for EVERYTHING and get very limited services. Now, don't get me wrong, I have better insurance than most. However, things need to be fair & easier to for people to get help. I really feel a conviction in my heart to reply to this & see what happens. Can I put one more thing on my plate? Any advice here?

Monday Morning Movie & On the Mend

2008-12-15T08:14:00.002-05:00

She is feeling better. She actually has started eating again. She has not had a fever since Friday! WoooHoooo! Now, I need to get my behind in gear to get all of this Christmas stuff done.

Still Sick

2008-12-11T12:28:00.002-05:00

Title says it all.

I had to take her back to the doctor on Monday. Even though she was on antibiotics, she woke up with a high fever. She had also started vomiting the night before. Ugh!!! Well, it turned out they think she has some sort of funky drug resistant strep. She was then placed on two different antibiotics. Yesterday, fever back up & diarrhea. I am debating whether to take her back this afternoon. Poor kid. With her autoimmune issues when she gets sick, she gets really sick.

DUH!

2008-12-06T08:37:00.003-05:00

I swear, before this is said & done, I am going to choke out Ms. X (that is MM's teacher). As I posted the other day, she was sick with a UTI. We sent her to school, with a note, stating she would need more frequent bathroom breaks. My mom picked her up Thursday and she was soaked. Not just a little wet, soaked all the way down to her socks in her DAFOs. My mom immediately asked Ms. X if she knew she was wet. Of course, Ms. X was surprised stating she did not know. My mom then asked if she got her bathroom breaks. Ms. X stated she refused. I have told her and put it in writing that she still must go & sit on the toilet. She doesn't really understand potty all the time and she must be made to go. Then, here's the clincher, in her usual Ms. X style, she said she was at speech and probably did it there. She still has to go back to the classroom, get her things and be picked up. ALSO, if Ms. X did her job, she would have to zip up MM's coat. Ms. X is always so quick to blame everyone else and does not take responsibility for things. I was LIVID to say the least. This is starting to border on neglect. I could not even address it on Thursday cause I would have made a complete a$$ out of myself if I had gone to the school. I tried to call the principal Friday morn and she was not there.

I guess I am going to have to call an IEP and get these things, which to me seem to be common sense, addressed. Don't let a five year old, who is functionally around 2.5-3 years, refuse the potty. Zip up the coat. Put on the hat. Help her eat. I am going to threaten to come over during the school day and take her to the bathroom, feed her and get her drinks. My mom would do it on days that I work. It is ridiculous & neglectful. I am also about ready to file a formal complaint with the state. She goes the whole school day without eating or drinking many days. She also does not go to the bathroom at all cause she lets her refuse. NEGLECT!

DUH!