Autism and a Strange Twist

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Last week, a strange thing happened.

We had to have new assessments completed for Casey and Rob and a very nice lady came to the house to talk to them. Well, talk to Mandy and I, as Rob saw no reason to visit with her and Casey was more interested in her iPad.

Casey did answer a few questions and absolutely made my week when the lady asked her if she was ever sad and Casey answered very emphatically that she was "happy!" That's huge for her as it was an open-ended question and one about emotions. And, it truly made me feel so good that she described herself as happy. I felt like I must be doing something right!

But, anyway, the lady had their ISP's (which, thanks to our amazing SSA, Farrah, are extremely detailed in what they need) and she was taking notes as we talked. It wasn't till we got near the end that I asked her just what these assessments were going to be used for and she said for funding decisions. I'll admit - it didn't occur to me until after she left that some of her comments weren't nearly what I should have been hoping for.

Several times throughout the interviews, she commented that I really didn't need to do much for them every day. I heard her say the words, but honestly, it didn't really sink in what she meant. Yes, they are able to do many things mostly on their own, but I'm right there with verbal clues and sometimes, hand over hand help. Shaving is all me. Hair brushing. Tooth brushing is mostly them with me watching (and helping Rob where we found out he isn't brushing as well.)

They don't cook, though they do help, at times. Very limited help. They both fold their laundry, but I wash and dry it. They help clean with me giving them one step at a time instructions.

They can't cross a street or parking lot safely and they can't be anywhere in public without eyes on them at all times - and usually close enough to distract them from wandering off. They don't touch the stove or matches or knives or cleaning products.

But - it's taken me 34 years to get to this point! Yes, our lives are much easier now because I have literally built our lives around autism, their needs, their wants and their safety.

Thirty four years of work from a huge village of support. Every person who has been part of their lives added something to their lives. Family, friends, teachers, aides, therapists, SSA's, DSP's..... everyone helped. I couldn't have done it without each of them and I am so grateful for their help.

And, now, this woman says it's so cool that I don't do much for them.

I'm scared.

What if her assessment, which I haven't seen, yet, changes their levels of support to what she thinks they need and not their true needs? How crazy is it that I'm worried that someone will think they are too capable? I'm so proud of them and how hard they work every day. I want people to recognize that and be proud of them, too.

But I also see their needs. I need people to be aware of those, too. It's the only way Casey and Rob stay safe. It's what keeps me awake some nights (well, that and the dancing above my head! ha!)

So my fingers are crossed that the report shows a true picture of them and she only asked the questions she needed to fill in the rest of her assessment. It's so odd to me to be hoping for a report of their struggles, even as I know it's what I need to see.

On a brighter note, they saw their neurologist and he is thrilled with their progress! I can share everything cool they do with him because he knows exactly how much they struggle and he wants to share the excitement of new things. We met him 34 years ago when he diagnosed Casey and he's been through the highs and lows ever since.

So, here I am. Thrilled by the doctor's excitement of their progress and worried about the assessment saying the same thing. How weird is that? It's our life with autism.

I think I need a nap.