I don’t even know where to begin today. Between forgetting to give Chick’s new school her updated immunization records (kinda required before she can be at school…) and trying to figure out what to pack Thor for lunch at school (dairy free gluten free and yummy tasting…right…) and plenty of other crapola…my mind is pretty much fried. I’m handing out the warning that if you don’t like a little mild language, you’re not going to want to read here today.
Here’s the thing I can talk about that’s keeping me up at night…
As I’ve made no secret about, Thor’s was diagnosed last year with Aspergers Syndrome which is of course an Autism Spectrum Disorder (ASD). We thought it was pretty mild. We were told it was mild. We did not have a full diagnostic testing panel done on Thor. Not because we didn’t think it was necessary but because at the tune of 3-4k (not covered by insurance in West Chester, PA) we went with the pediatricians diagnose that was a $20 co-pay.
We’ve made the decision to get him into Cincinnati Children’s for a full Autism test. Even if the diagnoses is the same we need help with what therapies are going to work for him. Because right now, just seeing the guidance counselor at school once a week for social group…it’s not helping.
Even with an IEP…we are all struggling. His behavior is going downhill (and maybe it’s all this other sh*t and tension that’s nothing to do with him that he’s feeling and picking up on) but the constant back-talking, impulse control problems and weeping that’s really got me concerned. The other night, I wasn’t actually there to see it, but during the Reds game one of our favorite players was tossed for something insignificant and this caused him to start crying.
It’s just not…normal. I don’t like that label of normal and not normal. I don’t know what else to call it though. Thor was allergy tested and the allergist suggested removing casein and soy and peanut butter from his diet. We also tried cutting gluten (as is typical with Autism diets). Do you have any idea how hard that is? (I know some of you, like Casey, follow this and get what I am talking about.)
The gluten free is simply not going to work (and the doctor didn’t specifically say gluten needed to be cut). We are sticking with no casein, so basically a dairy-free diet. We are already dye free (Do you know how much sh*t has dye in it?? Toothpaste, soap, vitamins…it’s not just a food thing.) I want to do everything I can to help him be the great kid that he is (and was). I would do anything for him. But I am struggling mightily with all this stuff. I don’t know what I am doing or if I am doing the right things. He seems to be getting worse instead of better and I am worried that it’s completely my fault.
I suppose a lot of parents feel like this. I read parenting blogs and I know we all struggle with the same basic things. I’m starting to feel this is getting beyond what I can handle or I need some super powered parenting class on Autistic kids. There is one class, held in NH or someplace…it’s $5,000 for one week. I don’t get why they have to make helping kids so freaking expensive. It’s supposed to be an amazing class. But what good is it if the majority of people can’t f*cking afford to attend the class?
I’m super frustrated today (obviously). Tomorrow I’ll go back to being the mild-mannered me you’re used to. I promise.