Follow by Email

Monday, May 21, 2012

TS Conference

 Alex and I went to a conference about Tourette Syndrome this weekend. It was such a great experience! I knew most of what was presented, but it was a unique morning because Alex was with me. Usually I'm the only one doing the research, reading, digging for information, looking for doctors, going to support group meetings...and Alex is always there to support me. It was really fun being with my husband for this conference and seeing it all through his eyes. 

 The conference speakers were a married couple, the husband is a neurologist and movement disorder specialist from Pennsylvania, and his wife is an educator who has experience in many different aspects of schools. They also have two children with TS. It was so interesting, because the doctor presented medical information about Tourette Syndrome, treatments for it, research that is being done, etc. Usually when you go to a doctor with your little boy who is tic tic ticking away, the doctor says oh, he's a boy. Lots of boys have tics. Don't worry about it. Then when you continue to hound the doctor because you know something more serious is going on, the doctor says oh, well, your son has Tourette Syndrome. We don't know how he got it, why he got it, AND there is nothing we can do about it. Enjoy your day. Humph. But this doctor at the TS conference was different. He gave me hope. Although there is no cure for Tourette Syndrome, there are methods a family or individual can use to deal with the symptoms of TS. There are things you can do for the other diagnoses that usually
 come with TS, like our boys have-ADHD, OCD, anxiety, sleep disorders, learning differences, rage. I sat there wondering if Jonah and Ben's diagnosis of Bipolar Disorder is inaccurate, because when you have TS it is common to have Oppositional Defiant Disorder and explosive outbursts, or rages. Like we have had in our family. 

The doctor was incredible. He was so knowledgeable about TS, and I felt like I could actually trust him! Usually I go in to any doctor's appointment with my Advocate For My Child hat on, ready to educate the doctor about my kid, ready to fight for what I know my kid needs, and most of all wary of whether I should trust the doctor or not. When we first started our special needs journey, I blindly trusted any and all people who looked important, sounded important, or were doctors of anything. After so many years of not being able to find answers to help my kids, I'm a little wary of people in the medical field until they prove to me they know what they're talking about. After that, they have my whole heart and soul. But they have to prove it to me first. I felt like I could really trust this doctor. I told Alex that I think a road trip to PA is in our future. We spoke with the doctor and his wife after the conference, and I mentioned to them that the boys have been diagnosed with Bipolar. I asked if they thought this was an accurate diagnosis or whether we may have some more exploring to do. The doctor said this is a common misdiagnosis of kids who have TS, and TS-related mood issues are treated differently than Bipolar-related mood issues. Hm. That's what I thought. The road to PA is looking more and more interesting. 

The woman who spoke about educational and parenting issues was also fantastic. She talked about some things that made me actually tear up. She said how she has her son stand at the dinner table sometimes when he is up and down, in and out of his chair, and can't sit still. We do that!! She showed a picture of her daughter who has TS, clothed from head to toe in warm clothes that were all mismatched. If that girl met Ben, I'm sure they'd be lifelong friends!! Ben wears long pants on even the very hottest days of the year. No matter how hot his room is, Ben sleeps clothed literally from head to toe, with a sheet and heavy blanket on. Silly sensory issues. They make life interesting! 

The woman talked about how in her opinion as an educator and a mom, parents should be open with their child's school about their child's special needs. We have done this from the beginning and it has worked out so well for our kids. The speaker said that you should be honest with your kids about their diagnosis, that it shouldn't come as a shock to them if in 8th grade they find out that their 504 meeting is happening the following week. The kids should know they have a 504 Plan. They should know they have Tourette Syndrome. They should be able to be their own advocates. When she said all this, I thought duh! Of course our kids know their diagnoses and that they have 504 Plans! Jonah graduated this year from an IEP to a 504, the school finally gave Ben a 504 after I had requested one every year since kindergarten (he's in 4th grade now), and the boys are thrilled that Aidan is going to be getting a 504 just like them too! The kids know about their "special" needs, and we talk about all of it openly in a warm, positive, supportive way. So I thought, why is this woman telling us all this? Then I realized that a lot of parents don't do this. I believe as a parent you have to make the best decisions for your family, and I try not to judge other parents. But for our family, honesty all around has worked best. I was so happy to hear from an "expert" that I had it right! That we have been doing some of the right things as parents. 

There are a million parenting books for people who have typically developing kids, but I haven't yet found a book about "What to Expect the Second Year From Your TS Kid." There's no trail blazed for you as a special needs parent. You're sort of in the dark, fumbling around in all directions looking for a flashlight, hoping you don't break anything fragile in the meantime. There's nothing I've ever read that says you should tell your child what their diagnosis is, it's just something Alex and I have decided to do with our kids. There are books that say letting your kid stand while eating or doing homework may help him concentrate, and that is something we do too. But to hear that we've done a couple things right, just by chance I guess, was so rewarding that I just teared right up in that conference room. 

I'm so used to being on the defensive about my parenting. We have lots of supportive, loving people in our lives, but there are many other people who seem to judge judge judge. People who are old, young, have "normal" kids, don't have kids, strangers, friends...I've seen so many people judge us because of how we parent. But they don't know our unique kids. Sometimes people are just trying to help, and I understand and appreciate that. But I'm talking about the people who just judge for judging's sake. People have told us we don't discipline strictly enough, we don't give enough time outs, we don't have enough rewards, we aren't firm enough, we don't follow through, we are too 'nice', we are too strict, we have too many schedules, we don't have enough structure, we shouldn't let them eat sugar or gluten or dyes, our kids just need a good spanking...whew. People's opinions can be tough to deal with. I've learned to nod and smile and put on my outer layer of tough skin, but it still hurts to hear all the things people think you're doing wrong as a parent. Especially when all you eat, sleep and breathe, every single day, is how to make life for your kids better. Although I'm sure all parents, even those of "normal" kids, get advice or opinions offered to them, it seems that when you have a child with special needs that people feel free to tell you much more often about all the things you're probably doing wrong as a parent. So to have the speaker at this TS conference, who is in the same boat as I am- with multiple kids who have special needs, say that I am doing some things right was just overwhelming. I will forever be grateful to that other mom for just reminding me that there are families like mine out there, and we're all doing the best we can, and in the world where we are not "normal", we're actually doing a good job of raising our kids. 

Our kids stand at the dinner table, they aren't forced to eat if they are not hungry, they go to bed on 90 degree nights in long sleeves, long pants, and socks, they plug their ears when a toilet is flushed, they eat and sleep and take meds at set times every day so they stay on a schedule (and yes, I get a little freaky when the schedule is not followed, because I am the one who has to deal with the fallout of a messed up schedule!), they don't wear socks even when society says they should, sometimes they wear socks even when they shouldn't because they can't stand the feeling of grass or sand on their feet, they have been known to wear Scooby Doo costumes to doctors' appointments, we watch TV sometimes when we eat meals so that everyone can focus on one thing and not digress into fights and running there. Those are just some of the things we do that work for our family that other people think are crazy. Crazy is the new normal in our house. When all the kids on the block are out running around until 10pm, our kids have been in bed since 7:30 or 8. Because that's what works for them. I know they'll be up at the crack of dawn regardless of when they went to bed, and they probably will have gotten up several times during the night, and if they go to bed late they'll just be even more tired and crabby than usual the next day. So most summer nights, our kids go to bed on time even though it's summer. It just works for us. We're weird, what can I say? 

It was a great conference. It is so important to connect with other families when you have children with special needs. To realize you're not the only weird ones is such a blessing. I'm researching TS experts in the area, and if I can't find one I feel comfortable trusting, the trek to PA with a car full of crabby SPD (Sensory Processing Disorder) kids is in our future. We'll load up on DVD's and snacks and bribes and just hit the road. We won't sleep much, the kids will fight a lot, and it will pretty much be a horrible time, but wow, if this doctor could point us in the right direction about what is next on our TS path, that would be worth it all. We'll see. In the meantime, I'll keep searching for things that make life for our kids easier. And I'll keep letting them stand at the dinner table when they're too squirmy to sit. The world will have to deal with our weirdness. 

No comments: