Hard to imagine what it would be like to have both. Either misery or it would keep you active, maybe.
My 5 year old has ADHD and I have SCA. Every day it’s a struggle, but some days are worse than others.
Yesterday as soon as he came home from school he had me running around in the back yard on uneven ground playing tag and rolling down the hill. Then I had to blow bubbles and look at the bubbles drifting around while he caught them. Then we came in and I started to literally pass out. Of course he didn’t understand that and it greatly upset him. I did pass out when my husband came home.
I can’t do ataxia-friendly things with him too much because those things make his ADHD symptoms worse, like TV and video games. He can’t tolerate reading for more than a half hour or so and even little projects like puzzles and coloring bore him quickly.
This morning my husband and I had to fight him like MMA to get him to school. I had to carry him in. He weighs 77 lbs and was kicking me the whole time. Now I am sitting on the couch and can’t get back up. Will have to use my rollator the rest of the day. I mean, I had to jack myself up on Adderall just to get through this morning. It’s not even 8:30.
And yes, he’s already on medication, for anxiety. He has the ADHD type where he won’t stop moving. We’re going to try him on counseling next.
And he’s 5. What will I do when he’s 10. Will I be in a chair by then? If I fight him in a chair I’ll just take off like OJ rolling down the hill in the Naked Gun. We all know how that ended up.
I think that’s possibly the worst thing about having this illness. The actual illness is terrible but the coping skills needed for everyday life makes it tougher. I wish you the best of luck!
I’m exhausted just hearing of your lot! not much advice to be given, just know your doing the best you can physically and take care of your self.
I admire you being able to cope at all, I can’t imagine how I would. Most 5yr olds are bundles of energy, and can usually be distracted if you need to rest, but a child with these challenges, and who is obviously as physically strong as yourself… Is there any kind of after school activity nearby he would enjoy, and would be suitable for him xB
We’ve already tried them all. You can visibly see the teachers disconnecting from him as he stops following their instructions and wanders off or just sits down. We’re considering doing some private tutoring over the summer in some activities he enjoys. He can concentrate if he is the only student.
It must be extremely frustrating knowing you’ve explored all help available and found nothing specifically hits the nail on the head. I hope one-to-one works out for you all xB
That sounds very difficult! I also have a son with ADHD who is all grown up (just graduated college). However, I wasn’t symptomatic with SCA until he was in high school. The ideas that I have for your situation may or may not be relevant, but putting them out there: 1) Listen to your inner wisdom/instinct/knowing about your self care and your parenting. 2) Get as much support as you are able for you and spouse (whatever that looks like—counselor, congregation leader, support group/online or in person for ADHD), 3) Maybe see if you can get Occupational Therapy for your son (great book: the OUT-of-Sync Child). 4)There might be foods to look at that can affect ADHD (Google or ask an MD). 5) Consider Craniosacral Therapy as an option for him, it helps balance the nervous system. And 6) Remember that there is always more help in the world than you can imagine. I learned this from A Sharp Turn Institute (https://sharpturnbook.com/institute.md) and remind myself daily.
I know that this is a lot of information, and I apologize for the length, I only want to be helpful and not overwhelm, so hope that ANY of this helps. Regardless, my heart goes out to you as you traverse this time.
Hey! Thank you! I’m looking up these things now! What a nice post to find waiting for me here!