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Thursday, October 24, 2013

New Braces & Testing

These are Carter's new braces- they go up his leg now and not just his ankles and foot.  We are hoping with more support he will want to pull to stand, and eventually walk.  This is a big focus of ours right now, as Carter turns 4 in less than 2 months.  We had to get a bigger size shoe to fit over the braces.  He still has such small feet, he's just a size 6 still. 

Carter has been doing great in preschool, I love hearing updates from his teacher.  They had class pictures a few days ago, I can't wait to see them.  His PT is having the wheelchair people come on Monday to re-fit him in his wheelchair since he's grown a bit since getting it.  They also had the communication people there yesterday to test him.  I went with Sierra to participate in the testing and learned a lot.  I don't know the name of the program they are with, but there was a PT, OT, speech therapist and then three others from a program to evaluate his needs.  They spent the morning watching Carter and how he communicates.  The main lady said she does not think he will talk or sign, because of his hand control.  Carter communicates with us with facial expressions, grunts, cries, moans, and laughter.  I think he is pretty easy to read, except for the occasional temper tantrum that I can't figure out.

They observed Carter on the swings and when they would ask if he wanted more, he would smile or swing his legs for more.  Eventually he tired of the swing, and started to try and get out.  In the classroom, the teacher has four different colored balls that each represent a different song.  Carter usually picks the yellow ball, for "If You're Happy and You Know It."  They didn't know him well enough to know if he picked it because he likes yellow, or like the song.  Or both.  I know he likes the song, so I'm sure that's why he picks it.  They decided to take the yellow ball away, and let him pick a song.  He looked for a minute, perplexed, then hit the balls away in frustration.  He knows what he wants!  They were playing with him.  I'm glad to see that spirit and recognition in him.  When they would sing his favorite song, he would bounce along and try moving his hands and arms to the motions.  Impressive.

They observed Carter reaching out his arms to be picked up, anticipating what was about to happen.  I see anticipation in him a lot, but I've yet to see him reach out for me when I pick him up.  Hmm.  Also, when Mary gives the kids options with questions, he will raise his arm some to indicate yes, or I want.  When he means no or I'm not interested, he won't respond in anyway or scoot away.  I haven't seen him do some of these things, but I bet in a classroom with more structure and consistency he is learning how to make choices.  Our goal now is to give him more choices at home, so he can communicate what he wants to do.  I am supposed to try giving him options, like with clothes letting him pick a shirt, or having him pick an activity by showing him 2 different objects or pictures that represent that activity.  We want to do more visual testing on him to see if he does recognize the picture, and can associate it with an activity.  Down the line, he could use a communication device to express his desires.  It would have buttons with pictures on them; so if he wanted a bath he could hit the button with a picture of a bath or rubber ducky.  Something like that. 

I don't give him choices at home really, I just lay out his toys and let him pick what he wants.  I pick his clothes, and with activities I know he likes certain things and when he is done.  I want to work harder at giving him choices, so he can have a say in what we do and feels like he can communicate.  I know this will be a struggle for us, but I hope we'll have success in communicating better with him than just moans or cries.  My goal is to have him walking by the time he turns 5, and using pictures or buttons too to communicate.  He is making great strides at school and I'm so thankful to his teachers for helping him grow.  It does, after all, take a community to raise a child.


  1. Hello! I just found out my daughter has 1p36 deletion syndrome yesterday. This is all new to me. She is our second child and I'm having another girl in December. Anyway, Thank you for blogging! I would like talk to you and ask some question if you wouldn't mind. I have no idea how to subscribe to your blog but I'm going to try to! I admire your strength!

  2. Such fun news! Exciting to see his is communicating. I can see how making those decisions can help to empower him as he continues to grow and learn.

  3. Thanks Debbie! Hi Bri- thanks! And certainly- there is a 1p36 deletion syndrome awareness & support group on Yahoo and Facebook. My email is and I'm on Facebook also.

  4. We have found that Zoe loves making choices. The trick is getting her to communicate clearly. Once she got started, she doesn't want to stop! She has opinions about all sorts of things these days and we love it. It is great getting to know who she, it really helps us understand her behaviours. It is also neat to see Ailsa, our other daughter try to give Zoe a choice. Usually she just hands Zoe the card of what she wants her to pick!