A typical day...

Contributed by Heidi:

(This is a requested blog post from a previous comment)

A typical day with an RS child doesn't start any different that any other child, at least in our family. I work away from our home three days a week. However, I'll describe a day I'm fortunate enough to be home with my boys.

Ethan sleeps in his own room most nights. Lately has been bent on sleeping on the floor of our bedroom. I will admit that I have caved on several occasions …sigh.

Anyway if I have already woken up and I am downstairs he will stand at the top of the stairwell and throw his stuffed bear down the stairs since he is not allowed to carry anything down the stairs. He must concentrate on getting down them safely!

Ethan doesn't have the same food allergies as Abby or any of the other eating issues that seem to plague a majority of the other RS children. So Ethan loves a big breakfast! Only it takes him forever to get through it. Lots of utensils and cups dropped when the weakness and coordination come into play. I would say on average we have 15 to 20 drops a meal.

We have a structured and not structured type of a day. He loves cartoon network and I am not a mom that says no tv. I tend to relax on some of those issues as we are so structured and disciplined with so much therapy and those are the battles I choose to fight. He gets two sets of a therapeutic listening at 30 minutes each session, each four hours apart. He does something constructive during these like worksheets for OT or board games. Sometimes we even use eating as this can be OT for him. We fit in PT throughout the day with knee exercise (which we do during Wii), clamshells for strength with a band, eye exercises which comes in many forms including some on an iPad or computer.

But with all the "therapy" we fit in it results in "play" for him. There have been so many instances where I have watched him play and I find myself thinking, "oh what great therapy that is”. With an RS child everything they do is learned. Not much comes instinctively for them. Even a simple task at almost 6 years old of getting in and out of a car is not a coordinated task. So as we go in and out of stores and cars there is a constant watch and aide that we provided. As much as it would be wonderful to still put him in a seat of a shopping cart to be able to get thru a store without him walking zig zags, tripping or bumping into something. At 6 he doesn't fit in the seats anymore so we get a few looks when he bumps into people or he walks into their path or falls and even does a complete somersault from tripping over his own feet.

A typical family dinner, with lots of dropped utensils again! Off for bath or showers, which we have to say constantly sit down as slippery doesn't even describe it, bed time stories and then to bed. Lately he has been pushing the typical 5/6 year old why does everyone else get to stay up later and gets out of bed with questions to delay.

He makes us laugh on a daily basis with his witty sense of humor and his quick thinking.
So, a “normal day” for us isn't too different from that of most families… or its just become routine for us. Of course I didn't describe a day when we have multiple specialty appointments and our weekly therapies...but... Maybe another post!