Advice re: using digits and other goals for Apert’s syndrome and ASD

 I was hoping to brain storm some ideas for couple of kids who have Apert’s syndrome, one of them also has Autism. They are 3 years old. I work with them in a school setting and I am also new to the peds. World.

Child A, who also has autism, has d2-d4 webbed. Child B has D3-4 webbed. However, the child does not use D2 functionally (will not attempt to oppose or use it to grip toys. It typically sticks out with d3 and 4).

The tips of D1 are radially deviated. So, even if the child were to oppose d1 and2, the tip won’t align. There is no PROM or AROM in the DIPs or the PIPs of either child. They are stuck at around 0 degrees. The tip of d5 has a mild flexion contracture.

To pick up tiny objects (e.g., small blocks, cheerios), both children oppose d1 with d5. But, objects fall frequently despite how much they have adapted their skills to be more functional. However, they enjoy their play time without being frustrated frequently. Other compensation techniques noted are racking and cupping  motion to pick up heavier objects.

To my knowledge, there is no confirmed surgery or plan of one as of now to separate digits or address joint issues. Meanwhile, I have been doing general fine-motor activities and hand strengthening. As far as I know, they are not being followed up in the community else where regarding hand function.

Any thoughts on,1.       What could I work on besides general hand strengthening?

2.       At present, my goal was to develop a functional grasp to manage playing with everyday toys without dropping them 80%. Any thoughts on this goal? Additional goals?

3.       What about preparing them for printing skills? If they continue to have no AROM in their PIP and DIPs of  in their d2-d4, what kind of assistive technology could be used potentially at their age.

4.       Community referrals to other rehabilitation options (who would be agreeable to follow-up knowing that the child has access to specialized services).

Your help is much appreciated.

Thanks so much.

Please reply here and/ or to: 

Sally Habashy (OT)

ot1@elves-society.com