We had an exciting week! I've been feeling a little off because I hadn't had a real bowel movement in 3 weeks. I was withholding it. Not too comfortable.
So, I had a rough time on Monday and Nixi didn't get to go to her session up at the therapy center. I just couldn't get my act together. We have a list of "no no's" in the house...no hitting, no kicking, no pushing, and no yelling. If we do those things after getting a warning we have to go in the bedroom and chill out for a few minutes. I was all about the yelling...so I spent a good part of the morning in and out of the bedroom.
School was good. I had a rough day on Thursday, my roughest yet. When we got to school I had a major meltdown in the parking lot. Mom got me to the entrance of the school and got Teacher Jenn to come out and carry me to class. Mom and Nixi hung out until I was ok..about a half an hour. I did a really great job of calming myself down. I just sat on the ground hugging my knees with my head down crying and saying, "mommy". I took lots of deep breathes, and when I was calm I asked mommy for a hug and then I was good to go.
Nixi had a GREAT meeting on Wednesday with her new OT. She was everything we could have hoped for and more. She was super nice and super knowledgeable. We will FOREVER miss our first OT, Christine, but at least we know now that we'll be ok. She's gonna help come up with a really great sensory diet for Nixi (I'll do it too), and mom feels super confident that we'll be on our way to a great future.
Our pediatrician referred me for speech and OT (occupational therapy) at a local rehab center. At school I'm only doing speech in the classroom with the other kids, and OT is the same...I wasn't really tolerating going to school on Friday for private sessions because I had a hard time understanding why I wasn't going to class. My speech is improving slowly, but I still speak primarily in one to two word phrases. The sentences I have are, "I want XXX" "are you ok/alright?" "I'm fine mommy/daddy". So, obviously, I need speech therapy...you can't live on 3 sentences alone. In terms of OT: I still choke on some foods, have a self restricted diet, cannot dress myself or put on my shoes (although, I do help), do not eat with utensils, cannot pedal a trike..working on the steering, cannot get in and out of the stroller or car seat, cannot pour myself a drink or drink from a glass by myself, etc. Basically, I don't really have any of the skills I would need to take care of myself. Now, obviously a 3.5 y-o isn't going to take care of themselves. But there are certain sets of skills that need to be developed by about age 5 so that they can be built upon. Life skills. I need those. Well, our insurance company has denied coverage, citing that they do not cover "stuttering, speech inconsistencies..." as reason to deny BOTH speech AND OT. They go on to state that the denial could be reversed "pending an evaluation and appropriate qualifying diagnosis." Mom and dad have never submitted anything to our insurance company diagnosing me with autism. In California, the only services insurance covers in relation to autism is ABA. While my speech issues and motor problems are diagnoses all on their own...once you get a diagnosis of autism they lump all other developmental problems under that diagnosis. If I cannot get the treatment I need I will never be able to dress myself, use a toilet, feed myself, keep myself safe. I will need to rely on others for the rest of my life to help with these basic tasks, never mind more complex ones. Seems hard to carve out a good quality of life, let alone self pride and respect, if I can't get myself a glass of juice or bathe myself and use the potty. Mom and dad asked that the referral be pushed through. They'll have to pay for the evaluations and hope the rehab center can come up with some creative coding, or the treatment I so badly need will all be paid for out of pocket. It isn't cheap. Something has to change in this world. I mean, really, folks. I'm going to grow up...so are all the other 1 in 110 kids on the spectrum with similar struggles. What's going to happen to us then? Who's going to change our diapers and get us our juice when our moms and dads are gone? Who's gonna pay for that...and is it possible to pay someone enough to provide that level of intensive care in a loving and patient manner to a total stranger? If someone don't take care of me now and give my mom and dad the tools that they need to help me, who will take care of me when they are gone?
I have autism. This inherently makes my view of the world cloudy and a bit confused, but I can say without question that there are a few things that I see clear as day and with no confusion. This world I live in is far to often unkind, judgmental, dismissive, dehumanizing, and at times cruel. I also know this, I am not unkind...sometimes confused, but never unkind. I am never judgmental...as far as I'm concerned, you're all scary/confusing/mesmerizing/beautiful. I do not dismiss anyone...human or animal, for I know you may have something wonderful to teach me. I do not dehumanize...as I am painfully aware that if anyone at times feels/seems un-human, it is me. I am not cruel..if you are upset, I will put my hand on you and ask if you are ok. I love.
What world do you live in?
Saf
Playing out front with our new trike!.............
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