Monday, May 18, 2009

Reflecting on the Last Post

After posting about today's ARD meeting I realize that I was wrong about things. I could always choose to delete the last post but I thought I should keep it to show myself and others what emotions parents go through at these meetings. After reflecting I know that all staff members that were there today really do care for our Andrew and want the best for them. They may not always know how to go about providing the best education for him and neither do I. I tend to have a guard up at these meetings and don't really let people in and I'm not sure why. Andrew's eye gaze is probably not want I think it is and I guess I had hoped he would be ready for a more advanced system of communication. I feel like I asked questions but got no answers and that is hard for a parent that wants her son to make progress.

I remember back to working in a school and talking with a parent of a child with severe autism before their ARD meeting. I asked them what was most important to work on in terms of speech therapy. The father's response was "I just want him to talk." This was a child that had once talked and gone through regression and never talked again. I now look back on that and have a better understanding for what he was going through with his child and I to just want Andrew to talk. I would love for him to be able to tell me about his friends at school and all the the things that he did outside with the neighbors. Sometimes that lack of having what I want for him turns to frustration. Not a good thing!

Throughout Andrew's life he will rely on others to teach him, help him, and care for him. I have to learn to let down my guard and let people help him and our family. I am so thankful that Andrew can go to school with friends and I know he loves it. He has a smile everyday as we walks down the hall. I realize that the staff don't have a lot of knowledge of Rett Syndrome and virtually none on boys with Rett Syndrome. It will be a process of educating myself and the staff throughout his school career. I still feel like there is soo much that I don't know about this syndrome and so much to do to help Andrew. I just wish there was a how to manual on this to tell me and Felt- yep your're doing it right, now try this. Aahhh.

Andrew is now attempting to walk into school with his backpack on all the way to the classroom. I will have to get a picture of it. It's really cute and I know it has to be hard for him.


Janine said...

Hi Brandi,
I'm now working at a school for children with autism in Indianapolis. We use sign language with all of our non-verbal children. I remember Andrew used to be able to sign "please." Do you think you could add a few more modified, simple signs to his repertoire so he can request his most preferred items? I used to think that children with poor fine motor and weakness were not candidates for sign; however, I've been proven wrong time and time again. When given good prompt and prompt fading procedures within the context of a child's motivation, I've seen success when all other options and people have failed. I realize you're not soliciting advice, and everyone has their two cents (and as an SLP you're highly qualified) so please excuse the suggestion if it is unwarranted. I wasn't sure if you ever continued pursuing signs, so I wanted to share my experience. BTW, I love all the pictures- he's adorable!

Anonymous said...

Dear Brandi,
How incredibly big of you to write this post. I'm sure it was hard, but I hope it was cathartic. I can only imagine how challenging this diagnosis is for you and Felt. Reading your blog helps me approach my ARDs a little differently. God chose you guys to be Andrew's parents and you can do it!! I keep you in my prayers.
Brielle and I love to look at the pictures!
Love you,
~Shelly George

Brandi and Andrew said...

Thanks for posting Janine! I wish we could have him sign. I think after you left SA is when he lost his ability to use his one sign. He has such a hard time using his hands even to grasp an object and the wringing his hands seems to really interfere with everything. I will see what Lupe or Tanti thinks. Thanks for the input.

Shelly- we miss you! Thanks for keeping up with us.

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