Our son, who is on the Autism spectrum, is also a habitual toe walker. It means that he prefers to walk up on his tiptoes. He has walked that way for as long as I can remember. When he was diagnosed with Autism at age 4 we were told that we would have to do some intervention to try and help this issue. The physical therapist at the child development center said he would need AFO’s or leg braces to help correct the long-term effects of walking his toes. The reason for the intervention is that over time the range of motion in his ankles becomes limited and it can cause other issues to his back and legs. There is no medical reason for him walking that way, but tiptoe walking is not uncommon in children with Autism.
Over the last 6 years we have gone through several pairs of AFO’s, 2 rounds of botox injections in his calf muscles and several times of having both of his legs cast. All of this to try and stretch those cords in his ankles. None of it has stopped him long term from toe walking. But the hope is that we can retain a good range in his ankles and that maybe in time he will outgrow the toe walking.
It has been a long and often exhausting process, lots of extra trips to Eugene and lots of extra doctor appointments. We just went through the whole process again in June, we got excellent results and now he is in a new pair of AFO’s.
As we went through the process in June, my son expressed discomfort at times with having to wear leg casts in 90-degree weather but he actually did not complain very much. It didn’t slow him down from doing activities that he loves, except for swimming and he even went to kids camp overnight. I am pretty sure if it had been me I would have done a great job at letting everyone know how horrible of a time I was having wearing awkward and heavy leg casts. Ethan is now wearing leg braces, they take time to get adjusted to, often causing sores on his feet that we have to watch out for and then having to get them readjusted.
I have to say that as he has gone through this process many times he has shown great courage and strength. A word that I feel describes my son well is Resilient. Recently our Pastor has actually been talking about Resilience in regards to situations and circumstances in our lives in our sermon series at Church. It really made me think a lot about Ethan. I decided to look up the definition for the word and it means
1. Able to recoil or spring back into shape after bending, stretching, or being compressed.
2. Able to withstand or recover quickly from difficult conditions.
Yes this really does describe our son appropriately, especially the second definition. As Ethan goes through life I see him deal with challenges on a daily basis that most of us don’t understand what it is like to deal with every day. I have seen him overcome obstacles and succeed in areas that I was not sure would ever happen. Just seeing him bounce back and recover from a month of pretty intensive intervention with his legs gives me hope. This has been a long and often difficult road; we will have more challenges I am sure as he gets older. But we also know that Ethan’s resilience and ability to rise to each and every challenge he comes across helps us to keep going on and it is our responsibility to help our son to become the person God intended him to be. We believe that our son is “Fearfully and wonderfully made” and so with his example of resilience we also believe we need to carry on with resilience too as parents as we raise this precious boy God has placed in our care.
Jayne Gautreau is married with three sons. Read her Mondays on Douglas County Moms.