The Price of Success

In a recent post we discussed the differences in traditional therapy (OT/PT) and ABM and the resulting clash of theories. The simplest way I can describe the difference is that the traditional theory wants a special needs child to mimic the development of a healthy child in milestones and timelines, while ABM focuses on the child’s current capabilities regardless of what they “should” be doing. This means that while OT and PT want us to put Mattie in the standing position on a regular basis, using her walker to practice walking, ABM doesn’t want us putting her into any position she can’t get into by herself, including standing. This dichotomy often puts us in a position of having to decide between the two theories and the multitude of therapists helping Mattie. This is not the only source of doubt and second guessing for Jess and I.

Like everyone, we have a finite amount of resources. While traditional therapies are covered by insurance, alternative therapies like ABM are not. There are other alternative therapies that we would like to try as well, cranial sacral massage (we did this for a while, stopped, now we are thinking of starting again) and hyperbaric oxygen therapy (HBOT) are two which we have discussed. In addition, there are some different types of surgeries and treatments which have been shown to help children with high tone/CP, as well as different orthotics-specifically a doctor on Long Island who makes customized AFO’s which some other parents we know rave about. This leads us to the question “is this the best use of our money?”

So far we have devoted most (if not all) of our money to ABM. We’ve done this because we believe in its benefits and we believe it has helped Mattie a great deal. This doesn’t mean that something else won’t help her, which is where the difficulty lies. As the money spent on ABM adds up and zero’s are added to the total amount we have spent, it is difficult not to second guess yourself. Would that money be better spent on HBOT? Is it worth the money to fly up to Long Island and get Mattie fitted for special AFO’s? Answering these questions becomes difficult when you realize that our resources are a zero sum game; spending money on a particular surgery is going to mean that we don’t have enough to go to the ABM center in California for therapy. More of one equals less of another.

For me, the questions and doubts can add up and sometimes result in feelings of guilt and inadequacy. As a father, I feel responsible for providing for the needs of my family. What kind of father am I if I can’t give my daughter everything she needs to have the most normal life possible (whatever that is)? What kind of man am I when I have to ask people-family, friends, even strangers-for money to help me take care of my daughter? This whole experience is incredibly humbling.

Jess and I are extremely lucky to have such a generous group of family and friends. We realize there are families out there with children that have more difficulties than Mattie and fewer resources to turn to for help. And so, at the end of the day we go to bed feeling fortunate. Fortunate to have such a large group of doctors, therapists, practitioners, family and friends to turn to for help. And ultimately, fortunate to have Mattie, secure in the knowledge that we have done everything we can to help our daughter, and will continue to do so.

Good morning Momma!

I am learning to get my legs underneath me…

and to lift myself up…

and to almost sit up, all by myself!!

3 thoughts on “The Price of Success

  1. I should know by now that I should not read Hope for Mattie blogs at work. The tears just well up and my throat closes up. I only wish I could do more to help you all out. I love you all so very much!

  2. I too have a child with Cerebral Palsy and have chatted with Jessica briefly on Facebook. This blog says exactly what my husband and I have been discussing lately. We also spend money on ABM, but we also have a stander, AFO’s, etc. and we aren’t sure which way to go right now. I really appreciated what you wrote (although it made me cry!) and I know that I am not alone in this struggle. Sounds like you guys love your daughter dearly and that you are doing everything you can for her. It is exactly what I am trying to do for my son. Beautiful work!

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