I am all for promoting saving your child's cord blood, but want everyone to know that we do A LOT of therapies with Katie, and although I believe the stem cells did help her, I don't think that they are a miraculous cure for Katie's symptoms. She definitely seems to be improving at a little faster rate, and I hope a lot of it is due to the stem cells, but the media seems to portray it as a miracle, and it really isn't. Not for us anyway. My friend told me that after watching our video on TV, her husband thought they should have another child to help the one they do have who has low-tone like Katie. Oh Gosh! That made me feel bad! I know stem cells are used to treat many things, so if you can afford it definitely do it, and hope you never have to use it.
On another note, I met a couple a few months ago who have a daughter with Down Syndrome. They told me about a place they took their daughter called The Family Hope Center, in King of Prussia, Pennsylvania. I was intrigued with what they told me and how much their daughter had improved in many areas, including vision and walking. What got me the most was when her father told me that he was very skeptical of going to another place to "help his daughter" when they had already seen many specialists, and after an hour of being there (in a seminar about how to help your child with brain injury) he was completely sold on what they were telling him. So, I went to the seminar a few weeks ago.
The Family Hope Center believes that if your child has a brain injury, treat the brain injury not the symptoms. I believe, along with many neurologists we've seen, that Katie has brain connections that just are not connecting. One example would be how we treat Katie's legs with physical therapy. Because there is nothing physically wrong with her legs, and it is really the connection from her brain to her leg that is the problem, treat that! I do not regret any of our therapies we have done, because they have helped Katie, but I think this new approach to treating the brain injury will push her ahead at a much faster rate, and treat more than one symptom at a time.
I will tell bits and pieces of this program over time, but one of the most important things I need to help her with is going back to basics- crawling. When you crawl, which she never did, (both belly crawling and on all fours, called creeping) it lights up different parts of the brain that don't get lit up any other way. Crawling is also responsible for the ball and socket of the hip joint to grind together, this creates a smooth joint and allows for a nice walking gait. When Matt, the Director of The Family Hope Center was explaining this, he said, "If you don't crawl, you will walk like this," and he walked across the room exactly like Katie. It was crazy!
So the idea is that if you can do a program with your child (they teach you how) that involves crawling, sensory, reading, deep breathing, and more... most children with a brain injury (autism included) will improve dramatically. It is going to be a lot of work, they recommend six hours a day - I think I can get in four. Katie is so social and loves being around other kids so I will not keep her out of school to do this all day. I think she would miss it tremendously and miss out on learning from the kids in her class. I know Katie has a lot of potential and hope that in six months to a year she will have huge changes. I also realize I am lucky because I have the time to put into this since I don't work, and that many people just do not have this kind of time. But I think there are things to take from this program that might be easy to incorporate, even with limited time. Others who attended the conference did not have a lot of extra time in their day and are going to focus just on what's most important in helping their child. I will definitely be writing a lot about what we are doing with this program at home. I am so excited!
Katie is in her Conductive Education Summer Program and doing well, they are crawling with her and she is also walking all over the place in her "Frankenstein" type of gait! I talked to Bea, the Conductor from Hungary about the ideas at The Family Hope Center and was relieved to find that they agree, which made me feel good because CE has helped Katie so much, I have a lot of respect for this program.
I will start Katie in mid-July with this new program when CE is over and I have more hours in the day to work with her.
Here is The Family Hope Center Website:
http://www.familyhopecenter.org
On another note, I met a couple a few months ago who have a daughter with Down Syndrome. They told me about a place they took their daughter called The Family Hope Center, in King of Prussia, Pennsylvania. I was intrigued with what they told me and how much their daughter had improved in many areas, including vision and walking. What got me the most was when her father told me that he was very skeptical of going to another place to "help his daughter" when they had already seen many specialists, and after an hour of being there (in a seminar about how to help your child with brain injury) he was completely sold on what they were telling him. So, I went to the seminar a few weeks ago.
The Family Hope Center believes that if your child has a brain injury, treat the brain injury not the symptoms. I believe, along with many neurologists we've seen, that Katie has brain connections that just are not connecting. One example would be how we treat Katie's legs with physical therapy. Because there is nothing physically wrong with her legs, and it is really the connection from her brain to her leg that is the problem, treat that! I do not regret any of our therapies we have done, because they have helped Katie, but I think this new approach to treating the brain injury will push her ahead at a much faster rate, and treat more than one symptom at a time.
I will tell bits and pieces of this program over time, but one of the most important things I need to help her with is going back to basics- crawling. When you crawl, which she never did, (both belly crawling and on all fours, called creeping) it lights up different parts of the brain that don't get lit up any other way. Crawling is also responsible for the ball and socket of the hip joint to grind together, this creates a smooth joint and allows for a nice walking gait. When Matt, the Director of The Family Hope Center was explaining this, he said, "If you don't crawl, you will walk like this," and he walked across the room exactly like Katie. It was crazy!
So the idea is that if you can do a program with your child (they teach you how) that involves crawling, sensory, reading, deep breathing, and more... most children with a brain injury (autism included) will improve dramatically. It is going to be a lot of work, they recommend six hours a day - I think I can get in four. Katie is so social and loves being around other kids so I will not keep her out of school to do this all day. I think she would miss it tremendously and miss out on learning from the kids in her class. I know Katie has a lot of potential and hope that in six months to a year she will have huge changes. I also realize I am lucky because I have the time to put into this since I don't work, and that many people just do not have this kind of time. But I think there are things to take from this program that might be easy to incorporate, even with limited time. Others who attended the conference did not have a lot of extra time in their day and are going to focus just on what's most important in helping their child. I will definitely be writing a lot about what we are doing with this program at home. I am so excited!
Katie is in her Conductive Education Summer Program and doing well, they are crawling with her and she is also walking all over the place in her "Frankenstein" type of gait! I talked to Bea, the Conductor from Hungary about the ideas at The Family Hope Center and was relieved to find that they agree, which made me feel good because CE has helped Katie so much, I have a lot of respect for this program.
I will start Katie in mid-July with this new program when CE is over and I have more hours in the day to work with her.
Here is The Family Hope Center Website:
http://www.familyhopecenter.org
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