New Here

[Jenna?]

I am new here, I just found this board last night when I was searching for information on AFOs and toddlers. My son is 2 1/2 and has PDD. He regressed at 14 months and since then we have of course been on this roller coaster. I am a stay at home mom and my husband runs his own business so most the time it is just me and my DS. I just wanted to say hi, it is nice to see an active special needs board.
Also I do have questions about AFOs.
For those of you that have kids with them are any of them on the autism spectrum?
Or do they have sensory issues? How big of an issue has this been getting kids used to them?
What questions should I ask going into the appt with an orthotist? I had never even heard that term until the other day.
Is there anything I should know?

Thanks,
Jenna

[sbgrace]

Welcome Jenna! I'm glad you found this board--it's a wonderful group I think and you'll find support here!

My son wore orthotics but nothing like AFO's. He's PDD-NOS but not a sensory seeker so he tends to like "stuff" attached to him generally. Basically, I'm no help there. I do hope your son adjusts better than you expect he might and yes I would mention your concerns certainly.

I am curious about the need for AFO's though--does your son have some physical or health stuff going on along with the PDD? My son had a constellation of things and also lost skills though later than your son and my kiddo was showing autism signs from the get-go as well so different that what you experienced.

[Jenna?]

My son doesn't really have a lot of things it is mainly PDD but like I said he has been walking since 8.5 months old but since he started walking he has continued to fall and be very unsteady. When he was younger people would keep asking me is he just learning to walk when he had been walking for 6 months. After he regressed and was dx his OT and doctors just placed his falling and clumsiness to his sensory issues and a poor sense of self. I forgot to mention he has great fine and gross motor skills always above age except for the falling. But recently his OT referred him to a PT because we noticed he was walking different then normal. Once he was evaluated by PT they started to notice he walks on the inside of his foot and he stumbles over his toes. It has taken her a few months to get the referral and he has gotten worse. Before you would have to get him a little tired to see him walk differently, but now he is always unsteady and falling so much more. We haven't seen the othotist yet, we will be seeing him this week.
Sorry this is so choppy... my son also has many sleep issues that go along with ASD so I am exhausted... He didn't sleep much last night so of course I didn't sleep much.

[anj_rn]

My DD is not walking yet, but we have AFOs. I can not help with the sensory stuff, but I can wlak you through the process of what will happen. On your first visit the orthotist will measure & draw on your childs feet, then wrap them up (like putting on a cast) then cut the casting off. They use it to make a mold of the foot. You child will need to hold 1 foot still at a time & deal with the stuff touching feet & ankles. Once it is done, they will let you wash his legs off & pick a pattern for the orthotics & straps (do not get light colored straps). I would suggest letting your son look at the patterns as a way to distract him.

Your next visit (2-3 weeks later), they will fit the orthotics and make any adjustments. Your son will need smooth knee high socks to go under the orthotics (start looking now they are hard to find) and wider shoes to wear over the orthotics (I would wait to buy them until you actually have the orthotics.

Good luck, my DD had sensory issues (avoidance not seeking) and her AFOs do not bother her (but her hand splints do).