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Friday, December 2, 2011

Wednesday like any other Wednesday is spent going to preschool and physical therapy in the evenings.  During this session I had some questions/concerns I wanted to talk about with Hayden's pt.  My little man uses a crocodile walker for his mobility in the classroom.  We loved it because it was sturdy, has anti tippers, and a pelvic strap to avoid falls.  Well, during Hayden's updated IEP I kept hearing over and over how big it is. How, it is hard to maneuver in the classroom, etc, etc.  I was taken back by this comment. Isn't school suppose to adapt the classroom around my son's equipment so he can participate like a typical 3 year old?  The shocking comment was from his physical therapist at school. I left his IEP meeting feeling sad not knowing how to address the comments that I heard.  I finally got a copy of the revised IEP we agreed on and it was written in the notes too.  My husband said yesterday when he dropped Hayden off to school the para even commented how Hayden really wanted to do something but the walker didn't go up to the sensory table.  I know this is a lot to digest but really it leads up to our Wednesday physical therapy session.

We met with our pt and I gave her a copy of Hayden's updated goals and explained to her the concern the school has with his walker. She was shocked as well. So, we tried Hayden with a Nimbo walker. It is similar to the crocodile but is light weight and might be able to maneuver better in the classroom. Previously, we could not use a light weight walker because Hayden relied so much on the walker for support. As I am writing this post I realized I need to celebrate that for just a moment. Wow, he doesn't need the walker for a ton of support anymore. To those moms not familiar with having to deal with equipment this is huge. Maybe I will finally have a walker that we can transport easier. woo hoo!! He did surprisingly well in the new walker but he was so scared. He was scared to fall we had to constantly reinforce him he was safe. I always feel so bad that he has this fear of falling. That is another obstacle we need to overcome.

After our walker talks we talked about independent standing. We cannot figure it out. He can stand at a wall for awhile, he can stand holding onto to something, he can even stand a few seconds to a minute without any support when we let him go and he does not realize it. I know a few seconds to a minute does not seem like a long time but in our world this is huge!  I told the pt we think he has a fear of falling he is so afraid to not have support. This is something I worried greatly about with all the equipment that Hayden utilizes. I worried about dependence and my skepticism is coming true slightly. Now, I am not anti equipment. In fact I support it 100% without it we would not see the progress that Hayden has made. Accepting it is sometimes a challenge. At first I was really sad that my son needed something but I got over it in time. My line of thinking has moved from fear of what people would say to him or us to this is what is right for my son. We do have to deal with questions from younger children of why does Hayden need to use a walker? I think we will have those questions whether it is now or years from now. It is how to learn to address them and move forward that is important. Okay, back to independent standing we are going to try a few things during pt and I spoke to our good friend and previous physical therapist for Hayden through early intervention.She gave us some fabulous ideas to try as well. Some suggestions were to use a rope having him hold one end. Or having him trying to stand and helping him to gracefully fall. That is the real fear, the fear of  falling we need to get him to cognitively understand how to fall. Everything Hayden has learned gross motor wise has been through lots of repetition and cognitively.

Our new pt homework will be all about balance and falling. Here is learning these things that we take for granted every day. Simple things like learning to catch ourselves.  Oh, how I wish I could make it easier for Hayden. I would give anything to make things easier for my sweet exceptional boy.  I find myself at times going back to that place wondering why my little man struggles with the simple tasks of life. Why he had to be chosen to persevere through the trials of every day life? Then I quickly remember why things happen.  This happened because he was the right little boy to move beyond the disability.  This happened because I needed to appreciate all that life has given me.  This happened because I was suppose to be that voice for my exceptional little boy and many other little boys and girls like my son. This happened to open my eyes to the world of possibilities.  This happened to make my family the beautiful family it is. I try not to let myself go to that place too often anymore like I once did a few years ago. Hayden is happy, Hayden is loved, Hayden truly represents the uniqueness that we can celebrate in this world, Hayden provides hope to many, and most of all Hayden is the very center of my being who I am right now at this moment.

1 comment:

  1. Just another thing about this journey that makes our head spin and our hearts hurt, right? I feel like we are constantly reassessing what we are doing, switching up our PT routines, trying to figure out what makes Sammie B tick and what will get us to the next level. It's so funny that you posted this - b/c I literally JUST (5 minutes ago!) had a conversation with my husband about the walker we are looking at for Sammie (a mustang, made by same company as crocodile, but newer model) and how the only drawback is that she won't be able to get up close to tables, etc. I know for now (like Hayden) she'll need that heavy one for support, but I'm so so hopeful that she'll progress like your little man and eventually move to a simpler walker.