Tuesday, January 22, 2013

A Jayce Update


Its been a long time since I've talked about my middle child.

A lot of times, with Jayce, there just are no words. Sometimes the words I have for him are not complimentary and I don't ever want him to look back on this time and feel anything less than love from me.

In some ways, Jayce and his autism have gotten easier as he grows older.

- He is quite verbal now. He can tell me when he doesn't feel good, what he wants for snack, or what his favorite game to play is.
- His self-help and motor skills have improved exponentially. He can bath himself, dress himself, ride a bike without training wheels.
- His diet is pretty consistent with other picky kids. He'll try any new food at least once. His favorite meals are mac and cheese, pizza, and chicken nuggets, though.
- He has some true friends. Alden and Louis are spend-the-night buddies. Camille and Dominick are friends from school.

Some things he has not outgrown are quite tougher to handle at age 7.5.
- He still knows how to throw a major tantrum
- Its a lot harder to enforce consequences for disobedience.
- His impulsiveness looks very out of place for his age
- Play, either independently or with friends, is still hard for him.
- This is the year where he's noticed that he's different... and other kids have noticed, too.
- We've dealt with bullying this school year. This isn't the first time, but it IS the first time that Jayce was aware that the kids didn't like him.
- His tourette's syndrome tics make him feel uncomfortable and embarrassed.
- School is requiring much more focus and attention and independent work.
- Aggression, anxiety, and depression have reared its ugly head.

6 months ago Jayce received a Tourette's Syndrome diagnosis from a Pediatric Neurologist. She also recommended that we get into see a Developmental Pediatrician and a Psychiatrist that specializes in children with autism. We are still on the waiting list for appointments to both places.

To help his Tourette's, we decided to try medication for the first time ever. 1 mg of Intuniv. It is primarily an ADHD medication that has the added benefit for helping control tics. We are lucky that it does, indeed, help with that a lot. Our biggest complaint is that it wears off too soon. For that, our neurologist prescribed Tenex, which is a fast acting form of Intuniv, to help in the late afternoon and for bedtime.

Before anyone dares to berate me for turning to medicine, let me say this....

-Jayce has been in some sort of behavioral therapy for 5.5 years.
- He has been receiving ABA therapy for the past 3 years.
- He has been in ST, OT, and Feeding Therapy off and on for the past 5 years.

There is no therapy that is known to help Tourette's. Medication, right now, is the only way to help the symptoms. Still, I was on the fence about trying medication until Jayce told the doctor, "I feel uncomfortable when my body moves and I can't stop it."

That clinched it. We're trying medicine.

Intuniv has been a wonderful drug for Jayce. It has calmed down a bit of the hyperactivity and impulsiveness in addition to controlling his tics. Overall, we've seen a reduction in tantrums, aggression, and depression. They certainly haven't gone away completely, but there has been a marked improvement.

However, Intuniv does nothing to help Jayce's focus and attention and memory. Now, I'm not talking about focusing on a Wii game for 3 hours or paying attention to the TV during Spongebob, or the fact that Jayce can remember what day of the week his birthday was on three years ago. I mean, being able to retain and follow a 3 step direction and not get distracted before even following the first step. Not having the teacher repeat "Get your science book out" 17 times before you realize you haven't gotten your science book out. Remembering what he was going to say in mid-conversation.

So, we tried Adderall, a stimulant ADHD medication, the week after Christmas. We gave him his 5 mg dose and watched in trepidation for side effects.... will it kill his appetite? Increase his tics? Raise his blood pressure? Send him spiraling into a deep depression?

And.....

Nothing happened. Like, nothing at all. You couldn't even tell we were giving him any new medication. He didn't feel different. He didn't act different. No side effects. No ADHD symptom control. No nothing.

So, we upped his dose to 10 mg.

We noticed a difference right away. Jayce was a totally different kid. He was helpful, thoughtful, polite, showed empathy (something we've been teaching him for YEARS in therapy but have never heard him generalize) and was generally a pleasant kid to be around. He even said, "Hey mom... I feel like cleaning and organizing my room!" and he did! He's never cleaned his room without a fight!

However, behavior was the only improvement. There was absolutely no improvement in ADHD symptoms. In fact, he was even spacier than ever. And he started to stutter. And his tics came back with a vengeance and we had to increase his Intuniv.

No, that won't do at all. So, back to the drawing board.

I guess its pretty common to have to do this trial and error method with medications, times, and dosages. It would have been a miracle if we had gotten it right at first. Next on the list? 30 mg of Vyvanse. Its in the same category as Adderall, but has less of a chance for side effects so we can safely increase his dose without messing with his Tourette's medication.

Let's hope for the best!

Jayce has so much potential. All I want for him is to be happy. He definitely wasn't a happy boy last Summer and I never want him to visit that dark place again. If medicine is the key to helping Jayce cope with his autism, then medicine it is.

His three year ABA program is coming to its end. He started with 27 hours while also attending a special needs preschool 15 hours a day and he's ending with only 8 hours of therapy a week. He's made so much progress and made so many new friends and learned so many new skills. We are thankful for everyone who has made a difference in our lives through Hope Reach.

Now, let's hope we can survive without a therapist in the afternoons!

4 comments:

  1. Don't ever let anyone criticize the choices you make for your child when the only thing you have at heart are his best interest for living a normal life. One where the other kids don't notice he is different, and don't make fun of him for it. You are absolutely doing the best you can, and sometimes therapy alone isn't enough. Yes our culture might rely too heavily on medications, but there are definitely circumstances that warrant the need. No one wants to live an unhappy life, least of all a child. At the end of the day, that is what you are trying to give Jayce because you are his mom and you love him dearly. No one has the right to criticize that, ever.

    You are obviously a very loving mother, and you're doing an awesome job.

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  2. lovelovelovelovelove

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  3. I can't even imagine how difficult the trial and error with drugs would be when it comes to your child... I hope you are able to find the right fit soon, and that Jayce is able to fulfill the potential you know he has inside him!

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  4. it WILL come together ... it will. I am so proud of you for what you are doing for Jayce.

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Thanks for commenting!