Di: Before we came to the camp our 13 year old son Jeremy didn't have much confidence, when we tried him with the walker. He didn't have the stability of steering it and we always had to hang on to his waistline. If you let go he would panic and we didn't have good success over that. He was tight. He couldn't put his arms up straight when we came here last March. Now he is in the walker by himself, in the hallway, without me hovering over him or hanging onto his shoulder .He can just go by himself and that’s a big success that I never thought that my son could do for himself. My husband thinks that HBOT helped Jeremy with his speech and lots of other things.
I really believe in this Conductive Ed and also the Hyperbaric Oxygen Therapy, and my husband and even my in-laws have seen a big change in Jeremy. We were here a year ago, when we went home and came back again for the Summer, we left Ability Camp not with a wheelchair but with a walker and that right there is amazing, a big wonder I never thought would happen! Three sessions and my son walked out of here with a walker and that was Sept. 1st and on Sept. 8th the school started, he went in with a walker and up until now he's in a walker, no more wheelchair.
Jean enters conversation: I've been here 3 times, and every time the people you meet are wonderful, and it's very comfortable. You don't feel like you're out of place at all. You walk in here and it's like home. Your children feel the same way and it's just comfortable.
You don't have to feel like your going to be away from home and you're going to be stuck some place like an institution or a hospital, which a lot of people have probably been in. Being isolated in a room and you're not going to have communication or anything. It's not like that here.
The first time I came for 3 weeks for just the oxygen. When I went home the first day back, I had a call from the head of Special Ed from the school, his Therapist and the School nurse, because they could not believe the changes in him. Because they were so great, I turned around 3 weeks later and came back for 3 more weeks, and again we saw amazing changes. So I've been here 3 times in 6 ½ months.
This time I put him in the Conductive Education, which was hard because he was older, but again, it was something to start with and work forward. He couldn't bend his legs out straight. He's now got his legs straight out on the floor. My husband couldn't believe the change he saw in him in the 3 weeks that he went home for and came back. So yes I see big changes in him. Stephen currently gets 1 ½ hrs. a week of physical and 1 ½ hrs. of occupational, but that, obviously was no where near enough. I think you need to do five weeks of intense therapy, everyday to start out after that and go back and teach your therapist to continue it. That I can see him progressing, more then he ever would have done before.
His therapists just went along with the simplest things that they could do with him, and without pushing him, and never even looking at him and saying he has this potential. They wouldn't even look that far. They did what they had to do just to keep him as loose as he could get him and beyond that, that's as far as they would go.
I have recommended it and I would continue to recommend it. If I had of known about this, my son's 13, and if I had of know about it 5 years ago, he probably wouldn't have had 2 hip surgery's that he's had, and I would have giving anything to prevent his suffering. But now I'll do the best that I can so that I can prevent him every having to go through anything like that again.
CE and HBOT together are amazing but if someone was scared or didn't want to try the two together to begin with, if they try either one on it's own, they're going to see proof that it works.
Di: Oh yes, I did. When I started here, the first time I only did Conductive, and I saw a big improvement. Then 2 months later, when we came back, we did Conductive and Hyperbaric. In the third week of hyperbaric's Jeremy started clapping open handed inside the chamber He never, never did that before, he was always closed fisted.
Tuesday I was crying! To see my son walking using the quad canes! I tried to hold my tears back because I have cried a lot in so many years since Jeremy's been like this, but Tuesday I couldn't hold back. Jeremy knew I was there watching and I thought he would just freeze up and not do it but actually, he demonstrated it quite well! I could see that my son is going to walk out from this place with a quad cane and I know it will happen. This camp will make a difference in Jeremy's life forever!
We've seen small steady changes, which is all that we really ever hoped for. We weren't expecting miracles. You don't exactly know what the kicker is that gets him motivated whether it's the Oxygen treatment or the Conductive Education or a combination of both but it's been successful for us. Once we started working with the Conductor, it was life changing for us because it got us into the right frame of mind. It answers our questions to say that we know where we want Jacob to go. How do we get Jacob there? Conductive Education is the answer to that question for us.
Jacob's a very social child and he enjoys the other kids being around him. I think it helps to motivate him. Sometimes he laughs when they cry, and sometimes he joins in with the crying but he's working hard and making steady progress and that’s what we were hoping to see. He was walking some. His head control has dramatically improved and I guess that’s the biggest thing that we've seen. The exercises we were shown to do, is only going to continue that, and we hope that will be the next big step for us.
We're very satisfied with the camp as a whole. The accommodations are very adequate. It's a wonderful opportunity to meet other parents to compare notes and to say this is what we've tried and to find out what somebody else has tried and you can't get that information anywhere else. You can't get it from the medical community and you certainly aren't going to get it if you don't get around to other families. One of the highlights of the trip is the meeting other people, making friends, or swapping e-mail addresses and be able to continue that transfer of information. It's been a wonderful trip for us. We've really enjoyed it and we've even had good weather the whole time.
The group setting has been good on both sides because not only have we made friends with other parents and other children, but Jacob has too. It's a great motivator. We walk with Jacob down the hallway and we've had as many as four other families in the hallway saying , “Go Jacob Go! ” and cheering him on and that’s wonderful. We can't get that at home. It's the same thing with the classroom setting, because we can carry Conductive Education on in our house but you can't get a classroom setting. It's been a wonderful experience to see that. How much has this helped vs. what we're doing now. It kind of answers questions as to how we want to go in the future.
One of the things that we have come to realize is that it appears to be all over North America, but I can certainly say for the United States, that our system has evolved into a very caring, compassionate system for taking care of kids with special needs. That is not always what the kids need. In fact, on most occasions this is not what the kids need! Conductors have shown us that the kids with special needs can be treated just the same way typical kids can be treated. The difference is that it takes them a little bit longer to learn it, you have to make a different path to learn it, but they can do it! But if you coddle them and stick them in a wheelchair, then that’s what you're going to get. If you don't put them in the right position to where they can learn how to do anything from putting their socks on and off, to feeding themselves, to walking, they're not going to learn it, sitting in a wheelchair. Conductive Education has helped us get rid of the wheelchair and it’s a major goal for us and for Jacob
I wish that we had started Conductive Education when Jacob was 6 months old instead of when he was 6 years old. That was the biggest change that we found since we’d gotten involved with Conductive Education. I just wish we had started it earlier. It puts you on the right path, as far as I’m concerned. It’s a path that’s going to get you to where you want to go faster, if you want independence for your child and I think that’s what all parents of kids with special needs are looking for. Sometimes it’s tough decisions and the Conductors make the kids work but…it’s just like any kids, if you have a typical kid with homework and they come in and they’re tired, and they say, “Dad I don’t want to do my homework tonight” you’re not going to sit there and say “Come here and sit in my lap and I’ll rock you to sleep”. You say “I’m sorry, you’ve got to do your homework” and this is the same thing you’ve got to do with kids with special needs. They’ve got to do their homework. You’ve got to be their primary therapist and you've got to work them and get them doing the things they need to do, and Conductive Education shows you how to do that. We couldn't be happier getting on a track of Conductive Education. It's been the best change for us since we've had Jacob and so it's great and I would heartily advise it for anyone just wanting independence for their child.