Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.




Friday, October 8, 2010

AFO's and BFF's

This is a picture of Nicholas's AFO's (otherwise known as an Ankle Foot Orthodic). He wears these inside his sneakers to correct his foot positioning. Nicholas has been diagnosed with valgus feet, or flat feet. This is a very common issue for individuals diagnosed with PWS. The low muscle tone and loose ligaments in his foot cause his arches to collapse. Left untreated this condition can cause all sorts of more serious skeletal issues, like hip, knee, spine and painful foot problems.

These plastic shoe inserts are manufactured by John, the same orthotist professional who makes Nicholas's back brace (or Franklin shell).

We had an appointment today to refit Nicholas for a new Franklin shell. We have been visiting with John for almost 8 years. At our appointment he was his usual self, tickling, laughing and adeptly distracting Nicholas as he takes the many measurements needed to design these plastic devices. In fact, most of the doctors and specialists that follow Nicholas share this unique characteristic.

It was then that it occurred to me. We have developed some wonderful friendships with many of the doctors and specialists that have followed Nicholas throughout the years. I realize that I see some of these professionals more than  I see some of my own aunts, uncles, and cousins. When you are the parent of a child with special needs, you come to rely on these professionals. You rely on them for their knowledge, their skill and their constant support. They are the true healers in this world and without them, my son's life would not be as fulfilled. I am thankful that they are all in our lives.

These professionals have truly become like family members.

2 comments:

Mary said...

So true so true! Over the years I've come to love our team members...

And thanks, you are reminding me that I need to get someone to look at O's feet again. He wore "magic boots" for years, and then graduated to arch supports but I'm not sure they are enough. Really seems to depend on who I ask..

Lisa said...

Thank you Mary. That's so funny that you call them "magic boots". Nicholas has slways called them "magic shoes". Great minds think alike!

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