We, the parents of special needs children, sometimes feel as though our kids are not making as much progress as we had expected. Going to physical, speech, and occupational therapy every week for a year, may result in holding the crayon properly and using 4 word utterances. In that last sentence I was tempted to use the words 'only' and 'just', but this is how I feel, not how Lila feels. These children may spend each week working so hard to just keep their legs in line as they take steps, and may not grasp that before 6-9 months of time. That seems like an eternity to someone who can just inherently take steps, but we have found that it's the little things in life that help these kids more than we could ever imagine.
In an effort to try to explain why we believe that Lila would benefit tremendously from an intensive physical therapy program, I felt as though Kaitlin could explain it better than I could. Kaitlin's story below will explain her experience with an intensive therapy program, and exactly what I mean by "managing our expectations". It's the little things that can change a child's life with special needs...
My name is Kaitlin Hickling. I'm 25 years old and have spastic diaplegic Cerebral Palsy which affects both of my legs. When I was two and a half years old, I couldn't even sit up by myself. In Canada, the government provides for maybe one hour of physical therapy a week. If you want any more than that you need to look into hiring a private physical or occupational therapist. My parents hired a private therapist so that I was receiving a total of two hours of therapy a week. By the time I was five, I was in a Kaye walker pulling it behind me, (the incorrect way to use a Kaye Walker because it teaches kids that they can lean back and there will be something there to stop them from falling; as soon as you get them on any type of cane though, that security is no longer there to stop them from falling backwards when they continue to lean). I was doing pretty well with the walker; going pretty fast and running over lots of toes, but the progression was very slow and starting to decrease.
When I was seven my parents heard about something called Conductive Education in Budapest, Hungary. It was an intensive physical therapy session that ran 5 or 6 hours a day five days a week for 5 weeks. The intensity of this program can be compared to sending your child to a gymnastics or ballet camp for 5 week instead your average summer camp. It was about the farthest away from easy as you could possibly get. Even the mentality was different. In one on one physical therapy, in my experience, a lot of the exercises were done to you and required very little true participation and almost no problem solving skills whatsoever. The expectations were low and if you were stubborn enough to resist cooperating in the therapy, eventually your hour would run out and you would, for all intensive purposes, get your way. Conductive Education, on the other hand, was nothing like this. First of all you were in a group setting so all of the attention was not solely focused on you. Group atmospheres can be good many ways:
1) You know or realize that the person is not there solely to cater to you so it makes it more difficult to distract the Conductor or therapist from the task at hand because they could just go work with another child therefore meaning you lose out on being the centre of attention
2) When you're having an off day where it seems like you struggling to do the simplest things, seeing another child, your peer, accomplishing whatever goal was set out for them, it gives you a second wind. It inspires you enough to strengthen your determination and resolve to accomplish your own tasks in a way one on one therapy never could.
3) You make lifelong friends with kids who really do understand where you're coming from and what it feels like to be a disabled child. You ARE equal. You ARE the same.
I started walking independently while I was in that class in Hungary. I started taking 2 independent steps. My father, who was a commercial diver at the time, came up to visit me around the fourth week. He was a little annoyed at the fact that he spent all this money to send me to Europe to learn how to walk and I was only taking two independent steps. I explained that though two independent steps may not have been exactly what he was looking for, these two steps and the ability to side step while hanging on to things now gave me the independence to go from table to table at MacDonald's and make my way over to the bathroom by myself without needing any help. I could go to my friends' houses and get around without needing to rely on anyone or needing additional adult supervision. It might not have seemed like a lot but to me those little things were huge.
We kept up the work when I got home and shortly after I turned 8 I took 20 independent steps. Shortly after that, my father opened up the Ability Camp which as far as we can tell was the first Centre for Conductive Education in North America. The Ability Camp is a year round facility where families come and stay for 5 weeks at a time. The main goal of Ability Camp is to help the kids achieve their independence so as they get older they can be as independent as possible without needing caregivers or added assistance. The exercises are also based around activities you'll find in everyday life; how to get up and down stairs or a ramp, how to manoeuvre on uneven terrain like the ground outside. how to fall safely, how to feed yourself, potty training, speech, fine motor skills such as crafts and various other activities, etc.
We've been here for 16 years. A few years after we opened, one of the families attending our camp told us about Hyperbaric Oxygen Therapy. As my father used to be a commercial deep sea diver, he was very familiar with chambers. We started offering Hyperbaric Oxygen Therapy and saw amazing results for a variety of different issues. It helped to improve balance, speech, reduce spasticity, improve focus and in one case made a significant improvement in IQ points. Ability Camp now offers both therapies in combination and there are free accommodations that are right onsite to every therapy offered.
I hope you all have enjoyed Kaitlin's story, as we felt that this explained what Lila is sure to think as a child with CP. This therapy program may be the biggest factor in helping the stem cells to work at their optimal level, as the stem cells need oxygen to grow and work their magic. So the school of thought is that the more you are moving, the more oxygen is circulating through your body, then the better chance the stem cells have at doing their job of healing.
This program will cost $7600, not including travel and expenses. Lila is more than worth it, and we will do everything we can for her to have a better future full of independence!