It’s 30 degrees and Autism sucks

And oh my GOSH that’s cold.  There was a possibility of snow last night.  Where am I, Washington?  Eh.  Thankfully no snow!  Yea!  I’m all about getting behind some pretty white stuff but does anyone remember what I survived last year?

Okay, go here and refresh your memory then….In case you don’t wanna click here’s the picture refresher:

Yes, that’s my neighbors car….somewhere in that pile of unshoveled snow…

And that was only the FIRST storm thank you!  Need I remind anyone that on the day my house in West Chester (PA) was packed up the moving truck never even made it down our street because there was too much snow.  And that he got stuck across the street from our development in front of the train station just trying to turn around (police car, wrecker, backed up traffic; the works.  We tipped him extra good for his troubles.)  We drove from West Chester (PA) to Cincinnati in a blizzard.  Oh, that was so much fun.
So, I am not kidding when I say, Let’s Just Not Do That Again This Year.
This week I didn’t blog.  I barely returned blog visits.  There are reasons why.  I’ve been vocal about the unendingly complicated series of events that have to do with Thor and his aspergers.  This week I took him (and Chick incidentally) to Children’s Hospital in Cincinnati for what I thought was his actual autism evaluation.  The one where they run tests that last hours (2-3 hours per test and he needs two done).  It wasn’t.  I misunderstood.
This appointment was only for the initial meet the doctor and find out exactly what they should test him for. And by test I don’t mean like medical with needles.  It’s all psychological and intelligence test type of things.  
I love his doctor.  If anyone needs a recommendation of an autism doctor in Cincinnati you should go see Dr. Zimmer.  Hands down she made us feel so comfortable (including the staff who were absolutely fantastic) I know that she’s going to do everything to help Thor.
The only problem is we have to wait until July 2011 to have the tests.
Yes, I did say July.  Of next year.  The July that is 9 months from now.
Nine. Months.
That’s how long we have to wait to have the tests done because there is no earlier date available.  I’m on the cancelation list.  But let’s be realistic.  Who cancels an appointment like this?  No one.  I wouldn’t cancel.  Not when I have a chance to be seen at the Kelly O’Leary Center for Autism. (I did initially say it would be May, thats just the parental appointment to learn what they are going to do.)
So, we wait.  And it kills me to know that’s another year lost with no specified plan in place to help Thor.  Sure, we have a 504 at school.  But the school, to put it politely, sucks.  They have no real interest in helping him since he’s high functioning.  Since he’s extremely smart.  I snarked on after the last 504 meeting (which I had to request!!) because it was so crappy.  You don’t need to hear it again.
But I am not okay with the way or non-way they are helping Thor.  Not at all.  I’ve looked at private school (which we can not afford), we’ve discussed moving to a better school district.  We’ve even considered moving him to a school that only handles aspergers and high functioning children.  
Anyone have $20,000 a year they can give me?  Cause that’s what theses school cost.  For one little year.
So, if I don’t come around to say hi in the coming week, this is why.  I just am struggling to accept all the things that I can’t change.

The Naked Truth: A double whammy of parenting sh*t

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.

 

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