Parents Making A Difference

We would like to invite parents to share with us the many ways that they are making a difference in the life of their child.

How do you help your child find acceptance with his/her group of peers?

What special way do you help your nonverbal child find his voice and express his personality?

Have you equipped your home in a unique way to encourage your child's movement?

Is there a unique tool that your have created to help your child become more independent?

What do you do to make a difference in your child's life every day?

We cannot help every child, but we can help our child every day.

Please email us with your ideas and stories. We will pick one each month to share here on the website. E-mail: office@aaippt.org

 

   The Story Of Kim Philo & Her Son Alex

Kim Philo is an amazing woman who is truly making a difference. When faced with the task of finding toys and equipment that would help her son Alex advance and grow, she stepped right in with craft tools and PVC in hand.

Alex, who turns four later this spring, was born with a myriad of medical difficulties, many of which still do not have a diagnosis. Kim says, "We're still working on that.  We've seen 3 neurologists, 3 genetic doctors, and a multitude of other types of doctors for many miscellaneous issues, but no one can seem to figure out exactly what the underlying issue is.  Alex does have severe hemophilia A (with an acquired factor VIII inhibitor), global hypotonia, cortical visual impairment, and developmental delays."

As a result of these diagnoses, Alex needs special help when it comes to positioning, moving, weight-bearing, toileting, etc. Even playing can prove to be a real challenge for him. That is what got Kim started with this process of making what Alex needs. She and the therapists realized that even with his vision problems, Alex is stimulated by the color orange and things that are shiny. Since she could find no shiny orange toys, Kim decided to make them herself with plastic canvas, yarn and tinfoil.

Alex approved wholeheartedly of her craft project, so Kim and her engineer husband began to think about what other things they could make. They decided their first project would be a bath chair for Alex. Kim says it took three tries, but they finally got it right!

Her favorite piece of equipment they made for Alex is his PVC walker. They actually incorporated bungee chords into it, and it provides much-needed feedback for him while he's in it. Kim's hardest project to date was the potty chair, and with Alex growing so fast, he's already out-grown it. She says she would love to have something portable, so that they can carry it with them when they travel to the grandparents.

Kim is quick to give her advice and lend her ideas to other parents trying to make equipment for their children, and while she has no desire to own a business at this time, she wants to help others in whatever way she can.

Kim says, "Reach out and find others in your situation, so you don't feel like 'the only one'.  Find out from others what is available to help in whatever way you need. Research whatever you can and go to doctor appointments with a little knowledge under your belt.  Let them know you won't give up. Fight for your child to get them whatever it takes to improve whatever they are going through."

When asked if she could make any piece of equipment, what would be her "dream" creation for our special kiddos, Kim replies, "I would love to be able to do something to help Alex use his arms.  Most things I've seen are to help with the legs or trunk.  I would like something that can help his entire body."

Kim Philo - this is one parent who is truly making a difference is the life of her son Alex, and as the rest of us are encouraged by her success, she is making a difference is the lives of our children as well.

 

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