The Great Walking Debate

My feelings on walking and reaching your "peak" potential. I see parents all the time with 2 year olds or even 18 month olds panicked that their child will never walk. I totally understand this..wanting your child to be normal....but, as I have said before an abled bodied persons normal and MY normal are two totally different things. When I was younger I went to an all disabled elementary school all my friends used, wheelchairs walkers, and crutches, and god knows what else.... even just 15 years ago the technology was a lot worse. Anyway my mom loves to tell me that when I was smaller I always drew pictures of people with no arms or legs. The school counselor became very alarmed by this and called my mother and me to his office. When the counselor asked me why my people had no arms or legs I promptly told him that they were handicapped (different terminology back then) The point is that it was totally "normal" for me..I didn't think it was supposed to be any other way. I think my little friend, Josh, showed that point when asked at what age do kids walk....6, 7, 8..... Just cause he wasn't doing it yet doesn't mean that he isn't perfectly normal and will walk when he is ready...HIS normal

Now that being said as a kid grows they need to learn to function in an able bodied normal world right? And yes as a kid gets older they too start to realize that they can't quite do everything a "normal" child can do...and you know what we WANT too. I can remember times even now where it is all I can think of. Why can't I play musical chairs too, why can't I ride a bike with 2 wheels and cool racing stripes....and as one gets older, why can't I cross my legs and wear short dresses, or why do my hands have to shake so much when putting on makeup. So, of course you as the parent move in and try to do the best you can for your kid; and god there is so much more out there now then when I was in the "molding stage," PT, OT, Speech, Horseback, Electric Stim, Hamstring releases, Botox, Balfocen, Hypo Baric Oxygen Therapy, and Conductive Education....The list goes on forever. But now comes the problem that a lot of you are facing. All of this stuff that you used to be able to call fun when you kid was a toddler (horseback, karate, PT) is WORK and your kid is tired of it. Let’s face it you don't exercise that much in a day. After my 2nd set of surgeries in 93 I used to say that I bet even Nancy Kerrigan, Olympic figure skater, didn’t exercise as much as I had to. So, you have to come up with motivation. Now see this is the thing about therapy you sit there with your therapist and your mom and everyone is saying well don't you want to do this so you can ride a bike like Sarah etc.. and after awhile when you think enough time has passed and you still haven't gotten anything out of it (What do little kids know about the range of motion in their hips) your self esteem bottoms out, you begin to figure you are never going to get there so why bother, and you become more and more comfortable with the way that you are currently doing things...the "wrong way." What other conclusions can you possibly draw when people are constantly focusing on what you can't do in therapy and trying to "fix you". What is wrong with who you are now?

The problem is that kids don't have any concept of how long forever is. And until it finally hits you that you really are disabled (or whatever the term) and have limitations, maybe even forever, you harbor this secret fantasy that you will one day walk. My 9 year old friend, Willie, wants to be a firefighter or a football player..What I mean is to kids just because something is one way now it doesn't mean that it won't magically change in the future. It may not fully occur to them that if they don't do this horrible PT now then they may in fact never walk. Of course no one really has time to let them figure it out for themselves. It really didn't hit me until I got my period for the first time.. Could I really have babies in a chair? Could I really become a Cardiac surgeon? The thing is that by the time you hit 13 or 14 all the doctors are telling you that you have plateaued an that there are very few options left...the way you are now is most likely the way you are going to stay. So, you see you have to push so that when your kid becomes old enough to fully understand and decide what he or she wants from life they have options left. Someone asked awhile ago if it was OK to bribe your child with toys or Nintendo I say whatever works.

I underwent a set of surgeries in `93 at age12. The doctors said that it was the last thing they could do for me. Heelcord, Hamstring, and toe flexor releases as well as breaking my ankles and turning them straight. Well do to doctor error I was left in cast for 12 weeks, instead of the expected six, and I developed a chronic pain condition called Reflex Sympathetic dystrophy. Less then a year after surgery I couldn't walk and spent all my time on meds. The doctors gave up and said I had reached "that age". He cut my therapy to once a week and even my therapist looked at me and said that was pretty much it. I got mad. I decided I didn't want to spend my life in a wheelchair and on pain meds. In ‘95 after we moved to Hawaii I started researching on the Internet. I spent 2 years researching the Rhizotomy and the Balfocen pump, the 2 procedures known to help older kids the most and after sitting down and telling my mom that I wanted to move to St. Louis and have a Rhizotomy (She called me crazy and refused until I pointed out that I would be 18 in a year and then figure out a way to go and have it done myself) she agreed. We got here in August and I had my surgery on the 22nd of Oct. Now I am walking heal to toe and straight even without my crutches and I can walk backwards and that is just the start. I was up and walking with a walker 5 days post-op.

My problem has now been finding therapists who believe that I can improve and who will help me get to where I want to be. Most therapist look at the age in my chart and have an attitude to start. I even had one therapist who knew nothing about CP ask me why I would put myself through the surgery after all I had to realize by now that I was never going to walk "normally." I told him that I wasn't happy with the way I was and that I needed to know that I did everything possible to improve my situation before I could call it quits. I needed to do it for me because I couldn't accept myself as I was before. A doctor on one of my mailing lists said awhile back that most teenagers sit in a wheelchair and never get up because it is too much work physically..this irritated me. I have done everything in my power to stay out of a chair because I don't want to be dependent on it. It is the Doctors, therapists, and teachers who keep insisting that I have reached my peak and that I should just accept myself as I am, who have stopped me. If I do ever sit down in a chair for good it won't be because it was too hard it will be because I have decided that, that is the best way for me to function and get what I want out of life.

Now don't get the impression that I am totally dedicated and spend 6 hours a day stretching. I had in fact at one point spent 4 days trapped under a foot of snow and ice without doing a darn stretch. I was mad I wanted to go out and play in the snow instead of falling down and bumping my head or breaking my ribs or anything else I have ever done that hurt. The thing is come Monday I always go back to therapy and it starts again.

Well this has gotten very long....My point is that everyone needs to stop paying attention to age marks...what your child should be doing when..and focus on what they are doing. Push them yes, but talk to them and ask them why they want. Some things are hard and you will never be able to soften the blow. I will cry so hard for Willie the day he comes home and really realizes he can't be a fire fighter...that hurt is in describable. And no matter what you do there will be moments when Little Josh hates his sister Mackenzie for the sheer fact that she will walk and lead a "normal" life and he might one day realize that crutches are as far as he can get. The thing is you can't let anybody except your child (when they become old enough to make that decision) say this is as far as they will go. How DARE anybody but the person dealing with it say that? It ticks me off to no end. Hug your child and tell him/her that you love them and when they scream and cry in frustration during therapy hug them and tell them that you will love them even if they never tie there shoes or whatever. Everything about this whole process cannot be about "fixing". Guide them until they can guide themselves and decide when it is time to quit and until then shut everyone else out.