World Spina Bifida Day

Today (October 25th) is world Spina Bifida day. I was going to do a typical awareness post, but nobody really is interested in the numbers behind the disability… so I am instead going to give you a glimpse into our life.

If you have followed the posts on this site, you know that my pregnancy was not easy. Several specialists tried their hardest to have me terminate the pregnancy. For me, termination of pregnancy was never an option that I would have considered. (I am not pushing my personal beliefs on anyone, I am simply stating that it’s not anything I would ever consider) At every appointment up until the point where termination was 100% illegal even with medical backing, they would try to convince me to consider it. They told me that my child would never walk, talk, eat, use the bathroom, etc… they said “he will be in a vegetative state for his entire life. If you can’t think of his quality of life, think of yours. How will your life be impacted by this?” Well, let me tell you how our life was impacted by it.

At 9 months of age my son sat up on his own for the first time ever.

At one, he tried foods… we were given a list 3 pages long of foods and items that he should not have. As long as we stick to that list eating is fine. He’s behind in eating on his own… it still (at 5) takes him forever to eat a meal and he can’t manage 2 utensils at once. But for a child who was never supposed to eat at all, I’m ok with him being a touch behind in this area.

At 2 he took his first steps, with the assistance of a walker, at 4 he got forearm crutches and at 4.5 he took his first independent steps. He still uses crutches, and we recently ordered a distance wheelchair for activities such as the zoo and Disneyland. He can, however, walk up to 30 feet unassisted currently. He will be going for surgery in the next couple of months to try to provide more stability to his ankles.

At 3 they tested his ability to copy simple shapes and utilize scissors… we had been working so hard on all of the rest of it that we had missed working on these things. I say we, and I mean his team and us, his family. He had PT weekly still at that point and nobody had worked on it yet. At 5 he hates scissors and can draw very well for his age.

I will pause here to give you some insight to the broken system that is PT/OT. By 3 my child had already had 3 PT’s and had been pushed off of our PT’s case load and put with a PT aide. They continue to try to do this to this day… it’s absolutely not ok and not fair to the child. As soon as my child excels they try to push him off to someone else. As soon as he needs additional care, the actual PT is too busy. I have lodged several complaints regarding this. I feel very strongly that a child will reach full true potential only when they are fully engaged and comfortable. If the PT is so busy that they can’t take time for a child who requires additional assistance, get another one to assist. We actually are going to be paying for a 2nd independent PT starting very soon, as we have been told that our PT is “too busy” for the care my child will require post surgery, and he will be placed, again, with an aide. It’s nice that we have a benefit company that allows this… many do not. As for OT, we have seen them ONCE and were told we do not require their assistance. Hmmmm. The system needs to change in order to be fully effective. 

When it comes to intelligence, my child is extremely smart. He is suspected genius, we may or may not have that confirmed in a year or two. 

This summer we bought a climber and that has helped so much, we also got a pool and that was AMAZING for him. My husband and I come up with several different methods for our son to do things, and he’s progressed far beyond even the most optimistic of opinions of what his future might hold. We look beyond his diagnosis and don’t accept “I can’t” we always ask him to try. 

He has achieved all of this despite doctors and specialists saying he could never do so. He has done it all even without proper assistance (in my opinion) from a PT/OT team. He has achieved more in 5 years than he was expected to in a lifetime. All of this has been done with an extremely optimistic outlook, both on our part, but more importantly on his. He looks at everything and tries to figure out a way that he can do it.

So, my awareness post isn’t about the numbers… it’s about the people behind the diagnosis who need to be seen as more than a number, and more than their disability.
See the ability not the disability“

Take care of yourselves. ~C