The therapy god

I am having to come to terms with the fact that when Nate starts Kindergarten in the fall, we are going to have to drop outside therapy. This may not seem like that big of a deal, but I am feeling very anxious about this. Therapy has been part of our lives for 4.5 years now.

When Nate left the NICU, I didn't know anything about First Steps, our early intervention system. A nurse did mention it to me but said Nate would not qualify until/unless he showed a delay, and at the time he was an infant and not showing any delays yet. Well, she was wrong. Nate would have qualified based on his diagnosis of Spina bifida, but by the time I realized this he was 6 months old. Already, he was showing delays, and I really regretted not researching it myself more, and I thought maybe earlier intervention might have helped him. Who knows, maybe it would have, maybe it wouldn't have made a difference. But that was just the beginning of me realizing I needed to be more proactive about Nate's care and options.

Nate's first physical therapist was brand new, and I doubt she's still a PT because she didn't seem to like it much. At least that's what I gathered from her not showing up most weeks. The next PT was okay, but she also failed to show up, without notice, many weeks, and she had a tendency of gabbing more than working with Nate. I was frustrated by Nate's lack of progress, but there were no other options for PT in the town where I lived. Maybe his progression would have been the same, but I always wonder if we had had a better PT if things would have been different.

Then we moved to Louisville. I requested a PT named Dee because a friend recommended her to me. Her first visit, she told me I baby Nate too much and that I need to consider PT my job since I'm a stay at home mom, and obviously I had not been doing that. I was livid. I DID consider that my job. I DID work with him, hours upon hours. Her next visit, she realized she had been wrong. I will never forget when she told me (in reference to Nate not wanting to stand in his walker), "It's not for lack of muscles. He's afraid of being off the ground." That's when Sensory Processing Disorder entered our lives, and within a week of doing the sensory therapies she gave us to do, he was walking down the street and back in his walker. She changed Nate's life. I don't know when we would have ever figured out the secret of Nate's lack of progression if not for her. She was a miracle worker for nearly a year, when Nate aged out of early intervention.

Besides PT, we also did occupational therapy, and at some points also had a developmental interventionist come to the house to check Nate's progress toward developmental goals. Even while he was in First Steps, we started also at Greenhill Therapy, which offers hippotherapy (horse therapy). At some points, he was having therapies up to 5 days a week. This was a grueling schedule. Because not only did we have therapy an hour a day, we also had lots of homework. Every activity became therapy. We didn't just play on the floor. I would make up a game so that he had to stand up and sit down to reach something, or sit in tall kneel position to play at his kitchen, or do activities on the exercise ball. He has never complained too much about therapies. It's just part of life. And for the most part, it's fun. For me, it has been a weekly or daily source of pride, challenge, and anxiety. One day a therapist would tell me how awesome Nate was doing, and the next day another therapist would remind me how far we had to go.

At age 3, Nate aged out of early intervention, and around that same time he started walking independently. When children age out of EI, the state then transfers the responsibility of therapies over to the school system. So Nate started preschool and was offered "the motherload of therapies" as one of his therapists told me. Not only did he get PT and OT, he was also given Speech therapy, which he had never received in EI. But in the school system, the therapies are geared toward helping the child be successful at school. If it's not necessary for his education, they don't work on it at school. For example, there are no stairs at school, so they don't work on them. But we do have stairs at home, and his independence on the stairs at home is always one of our goals for Nate. So we also continued therapy outside of the school system.

We have continued at Greenhill, which we love. They even featured Nate's story in one of their fundraising letters. He's been there for 2.5 years now, and we've had several of the therapists for PT and OT. Riding a horse is like no big thang for Nate now, just something he does once a week. Horse therapy is great for lots of reasons, which I won't go into here. We've also done aquatic therapy with these therapists, and that was so great for Nate. When Nate started preschool, he had a terribly hard time. Even half day was physically exhausting for him, not to mention he had just started walking and had just gotten a baby sister and I had taken away his paci! I think we had 3 days of therapy at Greenhill then, and I reluctantly ended up dropping one of them in late fall because the schedule was too much for him.

Nate currently does OT and PT back to back on Friday mornings during the school year, but we have seperated them for the summer so he doesn't get so tired doing them both on the same morning. His current PT is a really great therapist, but she and I have different personalities. I've known her for a couple of years now, so I know she is tough on Nate, and that's good. Sometimes she's a little too tough though--mostly on me. She often says things to me that sting, but I take them for what they are worth and try to forget the rest.

This week stung a little too much. I was already very anxious for several reasons. I am paranoid about tethered cord right now because Nate's left foot is pointing out, and that's usually his straight foot, and some other reasons. She tried to reassure me that it was because his braces are too short, so I said we would wait for new braces and if that doesn't help, we're going to see the neurosurgeon. Then we started talking about the decision to take Nate out of therapy when he starts Kindergarten. She thought it would be fine to take a break. She said that Nate could probably always (as in, for the rest of his life) use physical therapy, but (and this is when it started going downhill) at some point, Nate is going to reach his physical limit. He does have nerve damage, and you can't correct those deficits. You can only work with what you've got. Then she said that she thinks he could be reaching his physical limit soon. ... He might not progress much more than where he is now physically.

Okay. let me just preface this by saying that Nate is awesome. He is amazing. He is a miracle. He should not be able to do what he is doing, physically. He is walking and running and jumping and dancing. How much more could we ask for? But he still has his challenges. He has a tough time climbing stairs and still usually crawls on stairs. He has trouble getting up off the floor and back down on the floor. He's very unstable and falls a lot. And he just doesn't quite move like other kids can. And that's fine, but we'd like to keep going with therapies to make moving easier for Nate and work all these muscles he has that we never thought he would have.

So when she was saying she thought he might be reaching his physical limit, in my head I was saying "I don't believe you. I don't believe you. I don't believe you" and "We will prove you wrong." I will never put limits on what Nate can do, whether physically or any other way in life. I learned a long time ago that Nate will do what he wants to do, when he wants to do it. And he has surpassed all our expectations. So why would I think that is going to stop anytime soon. I let it slide, and told her how I've seen Nate improve at home in the last few months.

We went on to talk about some of the activities Nate will be doing this summer to help his social skills. I said he's always worked with grown ups in therapy, and that's who he likes to play with. She said he'd been "therapized" which I think is a funny and totally true description! We have all been therapized! I am such a believer in therapies that I don't know what we will do without them. My mom also said, "But what if he regresses with no therapies!"

This week my Bible study group started a new study called "No Other Gods" and it takes a look at our false idols in today's world. Whether we spend too much time watching TV to read our Bibles, or we turn to food for comfort, or we work our lives away for money or status or power, everyone has their false gods. These gods can start out as something good--like exercise, or keeping in touch with friends on facebook, or trying to please our husbands. But when we put too much energy and time and faith into these good things, they start to control us.

That's when I realized that therapy has become a god to me. Although we do put thought an effort into Nate's spiritual development, it's not anywhere near the time we have put into his physical development. My mood and outlook on Nate's future can be altered by one therapy session. It has been our priority for 4.5 years now. We have arranged our lives around it. It has consumed our schedules and our thoughts.

I'm not saying that therapy is a bad thing, because I am still a big believer in the power of therapy. I'm just a bigger believer in the power of God. Therapy is a good thing, and it certainly has its place in our lives. Just not the most important place. I have let a good thing become a controlling thing in our lives. And I can't believe it took this long to see it.

So we will continue with therapy this summer, and work hard as we realize that only God knows Nate's full potential. And in the fall, we will take a break, because Nate will be fine without it and will need the extra energy for school. After he gets used to his new schedule, I'm sure I'll be eager to try a new type of therapy to see how it might help him. And I will do my best to keep it in its proper place, after God and family life and the really important things.