Wednesday, September 01, 2010

Change isn't always easy

Yesterday was a big day. Emily's new stander was delivered! It is a Superstand by Prime Engineering. It can be used as a prone (on her belly), supine (on her back) and upright stander. It has lots of room for growth. It is a lot easier to use and a lot less cumbersome than the stander we have been using. Plus, it is purple (although you cannot really tell in the pictures). Check out Emily trying out her new stander: It still needs a few more adjustments, but we are getting there. The equipment guy (I swear some day I will find out his real title) dropped it off and showed me how to use it, but he did not fit it for Emily. He leaves it up to a PT. Well, I am not a PT, but I took a stab at it. Emily did pretty well with me putting her in it and taking her out several times while I tried to get everything just right. I have no doubt her new PT will have some instructions for us too, when we finally get to meet her.

Yesterday, I also had my first meeting with our First Steps coordinator and Emily's new OT. I have been anxious to get moving with First Steps here, but things just haven't moved along as quickly as I would like. It has now been about a month since Emily received therapy. Well since it took so long, I will get to see each therapist once a week. Needless to say, September is going to be BUSY! They do not offer nutrition or play group here, so Emily will just receive PT, OT and Speech.

Things have been quite different than I expected. I thought we would just be able to get started with First Steps right after we moved. That did not turn out to be the case. Our new coordinator is a very interesting woman. Some of the things that she has said makes me wonder how she is able to work with special needs families. She was having a hard time getting a speech therapist for Emily because a lot of the therapists were afraid to work with a kid with a g-tube. Doesn't every parent want to hear that therapists are afraid of their child? She also told me that she needed to warn the school district that Emily was coming so they could be ready for her. So apparently the school district should be afraid of Emily too. I did not realize that I have the only child in the area who is in a wheelchair and has a g-tube. GREAT! It is unfortunate that she was my first impression of this county. I am hoping that the more people I meet, the more I will forget about that initial impression.

Before we moved, our old OT recommended a particular OT in this area because she had an expertise in Assistive Technology. We were able to get that OT, but when I told her that is why she was chosen, she told me that she has a lot more experience with Sensory Integration than AT. She seems to be on the ball and I have no doubt she will do some great things with Emily, but it was just one more thing that was different than I expected. I was also told that the speech therapist that is assigned to Emily may not have much experience with AT either. That is helpful since Emily will depend on AT for communication. I have not met her yet, so we will see how that goes. Since we have such a short time left in First Steps, I will probably just stick with the therapists that are assigned to Emily (unless they are completely horrible).

Today I was able to visit the school that is in our district. There were about 8 children in the class today. That will increase as more children turn 3. They had 2 teachers and would have a 3rd as the class continues to grow. I was also able to meet the speech therapist as she came to work with one of the children. The classroom is fairly small. They have several different play areas or stations set up. I visited during a free time so the kids were involved in various activities throughout the room. They were all very interested in Emily. In my conversations with the teacher I've learned that there are no other children in the school with wheelchairs.

I left there with mixed emotions. The teacher is very nice. The kids seemed like they were really enjoying themselves and were learning through playing. I just wonder if the teacher and that classroom are really set up to handle the needs that Emily has. My fear is that she will be stuck in a corner watching and observing instead of playing and participating. Most parents want their special needs children in a "typical" classroom setting. I go back and forth about that. There is no cookie cutter solution for every kid. I have tried to find places that offer a more specialized setting for kids with special needs, but so far no luck. I also have no idea what the school district would do to meet Emily's needs (we haven't met yet). The hard thing about this whole process is I feel so alone in trying to get information. Before we moved, we had a great team of people working with Emily. They really knew her and were great resources to me and Mike. I just don't feel like we have that here and it makes me a bit nervous. I don't know what I am doing, but I am going to have to learn fast!

I know that God brought us here. He knows Emily's needs better than I do. He will give me the guidance that I need to be the best advocate I can be for Emily. I just need to remind myself of those things over and over.

5 comments:

Mo said...

Once Emily starts school, you'll establish an IEP which will provide the accomodations that Emily needs. And since Emily will be the only child with mobility issues in her class, this should work to your favor.

I know what it's like to move, re-establish therapies and find new doctors for your child; we did this two years ago. Meeting new therapists was a little difficult becuase I felt like we moved away from some pretty good ones but today I can tell you that Oia's therapists are more than we could ever have asked for; The best of the best. Hang in there, it might be rough now but it will smooth out in no time.

Stephanie's Mommy Brain said...

On a totally unrelated note - love the color of the wall behind Emily! That reminds me, we haven't seen any inside pictures. :D

Praying that God will give you wisdom to ask the right people the right questions. And persistence to keep asking until you find them. God moved Emily to this new place so it must be His very best for her. Can't wait to hear how it all falls into place.

Amy said...

Praying for you all! Moving isn't easy, period! Then add all the needs and it can get overwhelming (I know I felt overwhelmed at times when we moved!). Speak the truth to yourself! Believe it! He is faithful!

On a funny note--I was just about to write that I liked the color of the wall in the picture and then I noticed Stephanie noticed it to! Is it as nice in person?!

ajourneyinmommying said...

I'm laughing here because I, too, noticed the wall color. :) Pretty!! :)

I am wondering if you could call the nearest hospital or the nearest developmental pediatrician's office or something like that and ask if they could put you in touch with any organizations that support families and help with the IFSP/IEP process. Here in NC it's called the ecac (which stands for exceptional children's....something or other, I think) That helped me when we first moved. There were other families from the area that I could call and compare notes with. They could tell me their good/bad experiences with different area therapy places and specific OTs,PTs, etc...and different experiences with schools. I got a lot of info from another mom who was having trouble with the school Ethan was zoned for...I was wanting inclusion. She was NOT. It was good to hear her perspective and experience with the school, which helped me as I began working with the school.

Praying for this!!!

Jenkins said...

Praying for her school experience (and yours).