Soooo Frustrated

Something about riding in the car or car seat or sitting still or.... is just awful for Ayden Jane. It is like it turns the tone completely off in her belly and she begins to get the most awful posture with her belly hanging way out and her shoulders back behind her butt. When she turns the corner into the room her belly is the first thing to arrive and the rest of her gets there a few minutes later. Okay, maybe that is an exaggeration, but it is how it feels.

Our last trip was on Sat. for Mckenna's soccer. The fields were about 1 1/2 - 2 hours away. On Sunday she was hanging out her belly with a vengeance! Today we had PT and Jen had lots of great fine motor stuff planned.... She took one look at Ayden Jane and said, "UUUggggg. What is that belly doing?" Ayden Jane looked at Jen and asked, "you bring any tape?" I guess the kid knows what she needs. Jen has not taped AJ in a long time but she did today. She taped the backs of her legs again to keep her from 'locking out' her knees. It is like magic! Even in the hour she was slowly improving. Jen did some other things with her to get that belly back in action, but it was so frustrating to be spending the hour fixing things we had already fixed!

Now, my concern with all this is two fold. One, I need to be able to take AJ in a car seat and not have a puddle of rotten posture afterwards. Two, I need to not use all Jen's time fixing the mess from going places because reality is, I am going to have to go places.

So at the end of the hour we went outside and looked at the car seat, talked about what AJ does when she is in the car seat and what options were available to try. Jen suggested a few interesting things. 1) put something under her feet in such a way that she is not just dangling her feet from the car seat, but has something to push her feet on that provides some feedback. 2) Move AJ to the middle so that she cannot push her feet on the back of my seat. She feels she is using the forward push to enjoy hyper extension of her legs and in the end aggravate the whole situation. (Note: see idea one to understand why she likes to push so much) 3) try padding the seat in different ways to add support and or change support to see if anything helps. I may even try to find some alternative car seats at second hand stores... to see if there is just a magic formula out there for AJ. I don't think it is a matter of a good seat or a bad seat, just trying to find the seat that fits AJ best.

I know that Ayden Jane has all the muscle she needs. I know that she has made the connections she needs. I know that she is completely capable of the tone required to stand properly. So why does this happen? Jen's answer to that is she feels that there is something either in the brain or some where in between that is like a gate that gets closed off. Everything works on either side of the gate, but they can no longer talk to each other. She says this is somewhat typical in kids with developmental delay... that's why they are delayed. LOL. There are 2 approaches. Either work from the brain out building the connections/skills or, as in the case of taping AJ, work backwards from distal to central. In the case of taping AJ, it is triggering her muscles to turn on in her legs (as opposed to locking her knees) which support the lower abs.... Voia La, the hips and shoulder girdle are now connected through the torso and everything is 'on.'

Fascinating as it all is to watch, I would be thrilled not to deal with this anymore so I am off to do some major car seat brain storming!