Fighting the Fight

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

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

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

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

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

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!

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.