Thursday, July 17, 2014

Allies for Eli from Midwestern

Elias, just over two years old, is just now getting occupational therapy. There's a lot of reasons, both political and social for the delay in services and its been frustrating to say the least. I'm grateful though that I have an education degree and 6 years experience under my belt to have compensated a little for this lack of support.

We recently got to know a gal who attends our ward (congregation) who is a student at Midwestern university for Occupational therapy. I told her of my frustrations and she mentioned that she might learn more in her classes that might help me out. Well, she did more than give me info, but brought our names to her professors for Eli to volunteer in their OT lab for the other students to observe and work with him. I was thrilled and since the beginning of June through to the mid July, we will go twice a week to have what I call "learning time" with our OT friends!
Isaac and Keila helped out Eli by trying out stuff to get him comfortable.

As an educator I was always big on working with my kids to learn and reach their potential. Now as a mother of three (and one more on the way) I still reach for that ideal but find myself straining to do all the things I want to do with each of my children, let alone my boy with DS. Eli naturally takes more of my attention and time, and yet I want just as much to spend time dong ABCs or crafts and books with the older two. There are some days that I am just too tired to 'help' Eli feed himself with the spoon or a fork, or to help him go through the process of helping him pick up all his toys when his sensory needs dictate throwing is much more rewarding. At the same time I know that the repetition is important and necessary for him to gain the skills he needs in the future. So moments like these in the OT lab are so refreshing for me. First off I get to take a break and observe (which is means a lot sometimes), I've gained ideas on how to better help him with certain skills, particularly his fine motor control, he gains the understanding that he does not depend on only me to achieve things. Best of all we gain many friends along the way - definately a part of Eli's Allies!
Initially I was worried we wouldn't be a good fit for them. Eli takes time to warm up to people and a large group of 15 people watching you can be intimidating to the best of us, let alone a two year old! He's grown and changed though and after the first week he was willing to leave my side and have others work with him. It really was a wonderful thing to see! Now he walks in like he s a little celebrity, waving hi to everyone or giving high fives. Talk about the Cutonium at his best!
They gave us a Spio suit to try out ... An amazing opportunity if you ask me. There are many other parents of DS kids who have been advised by their therapists to buy one for their child. They cost about $120 and with the fact that the child can outgrow them quickly, it's a hefty price tag to swallow especially when one is not sure of their effect on a child and I insurance won't cover it. It's a highly stretchy material designed to help give physical feedback to the child to make them more aware of their body, motion. It helps in physical therapy (Eli's core seemed stronger) and gives back sensory feedback constantly. Eli didn't like putting it on, but it was apparent he got plenty of sensory feedback and no longer threw items, hit hard or bang things. In other ways it seemed it was all he could focus on and he lost a little of his fun interactive personality.
We found that he liked spinning on the swing to help with sensory integration. After a good spin, he was able to focus and sit for tasks that took more fine motor skills, such as this shape sorter. Throwing was at a minimum as was hitting or pulling. It seems to be our solution to some of his struggles, cheaper and easier than a Spio suit!
He loved how everyone would cheer him on and often stopped midtask to clap for himself! What a ham! He sure knew how to work an audience!
We are grateful for this opportunity Eli had and for the friends we've made along the way. All the therapists we've had become a part of our team no matter how brief their stay. It means a lot to us, because we see that one persons success is really an acknowledgement of our success as a community. Having Eli makes us see how much richer life can be when people help people with so much patience and love. Thanks be to the OT class of 2014 of Midwestern University!

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