Saturday, August 31, 2013

The gooey center

I realize that when I give updates on Tourette’s related stuff, it sounds pretty doom and gloom. Let me be very clear. It ain’t that dire. If Tourette’s is the hard outer shell, the rest of our lives is the ooey, gooey delicious center that is always worth the trouble.

We are a ridiculously happy family, and TS shit really only takes up a tiny portion of our lives. Yes, it’s always there in our face, and it adds challenges on a daily basis. Despite this, or maybe even in tiny part because of this, we are as close as 3 people can be. We are a team, and not one person in this family feels they ever have to face anything alone. 

We are fortunate enough to live in a place of incredible beauty and opportunity. Perrin is learning through life near one of the most fascinating cities in the country. He and I are privileged enough to go to the museums in Chicago frequently, and I get to see the excitement on his face every time he stands inside a vortex, watches the sun pop out in 3D, touches a stingray, gets to pretend to drive a real submarine, and jumps in the waves in Lake Michigan.

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We got to take an adventurous vacation this summer where Perrin and I rode horses for the first time

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Relax in the lake and let all the worries of the real world wash away as we spend time together as a family

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Perrin has the best group of friends a kid could have who love and accept him. We belong to the coolest homeschool group ever. We have a community where we fit even when we don’t fit. The bubble doesn’t exist anymore.

I have these guys. The absolute raddest group of ragamuffins a girl could ask for. They make my life unimaginably fun, and they’ve never been embarrassed to be seen in public with any of us. Tics, tattoos, old lady glasses, full on meltdowns. Nothing is too much for them to handle. At least so far :)

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We have a family that understands and supports us. Who will always be there if we need  anything. No matter what.

And above all, we have this


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When many marriages struggle to stay strong with the added pressure of raising a child with special needs, John and I have never wavered in our disgusting love and devotion to each other. I have a true partner, who comes home from work early because he knows I’m falling apart, who encourages me to go out with my friends or fly to Austin for a sister weekend. Who still brings me flowers, chocolate, and the booze I like just because he thinks I’m awesome.

So, really, when you get right down to it, Tourette’s is the blip on our radar that is annoying but not catastrophic. There is no impending emergency. Our child is happy, healthy, and amazing. We are all in this together.  Is there really anything else that matters?

Tuesday, August 27, 2013

The new news that might not be news

Make sense? Well, that’s because it doesn’t. I’ll try to make this concise while still being informative as I possibly can.

A few weeks ago, I took Perrin (at the recommendation of his neuropsychiatrist) to a psychologist to get a thorough neuropsychological evaluation done. Our primary objective was to determine the reason for his lack of academic progress despite numerous interventions and a year and a half of one on one teaching. I’d take all the blame for being a subpar teacher if I thought that was truly the case, but he has had extensive tutoring over this time with very qualified special education teachers with very little progress. So we thought it couldn’t hurt to get more information and to also see if maybe this was due to a complex learning disability like dyslexia. Dyslexia seemed to fit in all my research, so I seriously thought this was what we were going to be told was the issue.

That is not what we were told. After 6 hours of IQ testing and other psychological testing, it was determined by this psychologist (mind you, one that has only met Perrin once) that Perrin has autism in addition to the Tourette’s and a moderate intellectual disability. This means that Perrin’s IQ is around 50. To give you some context, that is 25 points below Forrest Gump.  Hearing this news, as well as being told that it’s likely Perrin will need to live in a “group home” if he didn’t live with John and me for the rest of his life felt like being stabbed in the gut. Repeatedly. With a knife. That’s on fire. And that spins. With spikes. I was devastated. I told just a few people because I really was not up for the inevitable platitudes of “Oh, he’ll be fine.” or “He’ll catch up.” Because at that point last week, I did not believe that to be true. I was making plans in my head for how to best serve his needs while realizing that what we really needed to do was lower our expectations for him to be a fully functional, independent adult. Ever. I couldn’t deal yet. I’m not sure I can deal with it now. The psychologist told us that our best course of action was intense intervention – this meant social skills groups, occupational and speech therapy, behavioral therapy such as ABA, and much more stringent academic interventions than one stay-at-home mom can provide. I panicked.

And then I took a weekend to try  not to feel the weight of this crush my spirit. I want a happy, healthy future for Perrin just like any mother wants for her child. I want him to have all the same options available to him as every other child. In the back of my mind, I guess I always knew this might not have been realistic. But literally not one person who has ever worked with Perrin has ever told me that they thought he was intellectually disabled. Not one. When I questioned why Perrin wasn’t learning how to read, or why he still isn’t able to carry on a meaningful conversation that makes sense to anyone but him, all I was ever told was “he’s complicated.” Which is true. He has so much neurological bullshit swimming around in that perfect blonde head of his that it would make anybody crazy trying to organize a single rational thought. For Perrin, not only does he have constant tics, but he has OCD, SPD, anxiety, and ADHD so severe that it’s impossible for him to sustain his attention beyond a few minutes. The psychologist performing his testing even admitted she was never sure if he wasn’t answering her questions appropriately because he truly couldn’t understand them or if he was focusing on a person walking down the hallway, fiddling with his wristbands, or any one of the hundreds of thoughts that are constantly floating around in his head.

So that brings us to today. I took all this pessimistic information to Dr. Kohn, the neuropsychiatrist that has treated Perrin for almost 4 years, and he looked at me and basically said it was mostly bullshit. That there is no way a kid as complicated (yes, there’s that word again) could do well on a standard test like the one the psychologist gave him. Dr. Kohn believes Perrin is actually much brighter than his abilities show us, and that one day he may catch up once he learns how to filter all the unwanted stimuli out of his head. He agrees with the autism, but he believes Perrin is much higher functioning than he appears. So, in the end, Perrin presents as intellectually disabled because he is still not processing information correctly. When pushed to try to give me some kind of an idea as to why that is or when we could expect him to start doing that, I was met with “I don’t really know.” A lot of is ADHD, a lot of it is auditory processing disorder, and even more of it is simply that he’s at constant war with his body, which leaves little motivation to do anything but deal with all of that.

So, where do we go from here? Perrin still needs a lot of therapy to help him while his brain develops more maturity. He needs a lot more academic intervention than I am qualified to give. So we’re left with a few options. Put him back in public school full time and let them try and do the heavy lifting. This option makes me want to pull out my hair one strand at a time and then use those strands to tie all of my appendages tightly until they die and fall off. Another option is to hire an attorney and spend what could be years fighting the district for outplacement to a therapeutic day school for children with disabilities. This option just makes me tired. The option that I like, and the one I would love to fight for is for Perrin to go to public school – back in a self-contained classroom – for only half a day. This would give him 3 hours of academics, therapy, and that feeling that he fits in with “the norm” enough that he might stop begging me to send him back to school full time. This would leave me the afternoon to get him to private tutoring and therapy and still squeeze in social activities with our homeschool group. It’d be the perfect harmony between public and homeschooling, and if the district was willing, I know I could make this work.

In the end, I know that Perrin is still Perrin. I know that we are doing everything we can to help him be successful and happy. I know everything that everyone thinks they’re supposed to say. But the truth is, this does suck. As strong and optimistic as I’d like to be, there is still a little part of me that worries so much about Perrin’s future. And I think I have earned the right to worry. I’ve earned the right to mope just a little bit. And I have. But I also know that it’s time to put on my badass “take no shit” boots and get out there and fight for my son. Because that’s what I do. And that’s all I can do.