I participated in a panel discussion on parental impacts of constraint therapy yesterday at the American Occupational Therapy Association (AOTA) annual conference and it was really interesting. There were three other families represented, two of which had kids who were officially diagnosed with in utero strokes and their kids were able to attend the conference to talk about their experiences.
One of the kids was 5 years old and he was just finishing up his first clinical constraint therapy program. He looked really symmetric overall. He talked about a less formal constraint therapy he did before and how he hated it because his cast was itchy. He went on to say his current cast that he got through KKI is soft, he really likes playing with his affected hand, and the toys are fun. He was really excited to show the crowd how he could point with his affected pointer finger.
The other kid was 10 years old and she did two intensive constraint therapy programs in Alabama, where the pediatric constraint programs first were developed, and she really liked both. She had just turned 2 year old for the first month-long, 6 hour per day constraint program. When she was 5 years old, she did an intensive bimanual experience that she remembers disliking because the other kids in the program were younger and cried a lot. And when she was 7, she did another intensive constraint program in Alabama and had a really great time. They’re thinking about doing another program soon. I couldn’t see any obvious impairment with this girl; she was reading a book and holding it with both hands and looked totally typical. It was awesome.
It was interesting to hear all the similar experiences that we’ve shared with these other families. Both in utero stroke families had almost the exact same diagnosis timeline that we had (typical seeming kids until about 4 months, a couple months of watching and exploring, and MRI that confirmed the stroke about 8 months). They all talked about challenges with early intervention OTs, specifically the pushback about constraint program.
It was a great opportunity for me to tell Allie's story and it was nice to see these older stroke kids doing so well.
My dad (Granpa) and my brother (Uncle Mikko) are in town and Allie is so excited to have them. They’re helping to renovate our basement so it will be a functioning guest bedroom and art studio for Allie. The first thing out of her mouth this morning was “Is Uncle Mikko sleeping?" I said he was and she yelled "Wake up Uncle Mikko!" My sister (Auntie Hannah) and my stepmom (Grandma Bets) are in town too but Allie hasn’t had a chance to visit with them yet. She (and we) will get to catch up with the full gang tomorrow and Friday.