Wednesday, November 17, 2010

Need to Clarify

I recently made a post on Kidz about the book What To Do With Your Brain-Injured Child.  There was a very valid comment and concern that was posted, and I feel compelled to reply to that, though I found I couldn't stop once I got I decided to create my own post to help explain our process and experience a bit more.  I want to repeat that I truly feel like this comment was very valid.  We should question things.  When we read something that contradicts information we have received, we should investigate.  That is what I believe.  So, I thank this mother for posting that comment and making us all aware of what's out there.  If we didn't share these things with each other, there would be no point in Kidz. What community would we be if we neglected to share information with each other?  So, thank you Tiffany.  Now, though, I feel like I need to clarify some things...maybe why we choose it instead of coming off like I was announcing to the world the best thing next to sliced bread.  ('cause really, who can beat sliced bread?)

Below is what I began to post, and thought I'd just post it here instead:

Thanks for sharing that site Tiffany. I think it's really important that everyone know the full picture and not go into anything blindly, especially when it comes to helping our children. I immediately went to the article and read it. And, though I understand what is said, I question it on some points. My regular PT, old and new, use patterning with Sammy during our the issue of patterning I'm quite comfortable with. And there has been more recent research that shows evidence of these techniques...and they aren't connected with Doman. Now, I honestly wouldn't put full stock in his institute, only because what I've heard is that they stay really strict to what Glenn Doman, the founder, developed. There was a group of therapist who broke off from Glenn Doman's group over the past few years (maybe 10) and started implementing new research with the old...what Glenn developed. As I think about the program we do with Samantha, there's so much more than the psychomotor things that the article speaks of.  In fact, we are currently doing little of that (if any come to think of it).  Instead, it is sensory intensive...but perhaps that's thanks to the group that has broken off?  I feel comfortable with our therapist who uses a combination of her training with Doman, but also newer methods. Perhaps the institute in Utah is among those people who broke off? I'm not sure. Our therapist works independently but is connected with the Family Hope Center in PA.

Due to my husband's recent job (yeah!), we just changed insurance companies.  We had to switch all doctors.  (not yeah!)  When we met with our neurologist, I answered all her questions and informed her about Samantha's history.  I then told her about this new therapy we were doing.  As I explained it to her, she encouraged us to continue with it.  It made sense to her, based on her knowledge of the brain.  Of course it was a condensed version I told her...but I told her what exercises we were doing with Samantha 5 days a week.  She seemed to fully approve and, again, encourage us.  It was a validating experience if nothing else.

Anyway, this could be such a long comment...a post in fact:)...but ultimately, there are 2 schools of thought. One is my husband's: you need, not just facts, but enough of them to make it substantial. I agree. Mine: Sometimes, if something works, I'm not going to wait until they come around. If it's anecdotal evidence, sometimes that's enough for me.  My mom and dad think echinacea cures their colds. Studies have shown NO evidence of that. My parents are never sick. It drives my sister crazy and she's always telling them they're crazy!:) I know, placebo effect...but hey, if it works and it doesn't hurt you...(though, I really do feel like at the time I was well enough informed.  I read books and articles and talked to those who had used the method.  I felt good about it.)

Could this therapy hurt? Yes! Though, I don't see how it can hurt the kids. Based on the article I read, I can see how it could rip a family a part...the time in intensive and it's quite expensive if you go to the institute in PA. But we haven't had that experience. It's quite inexpensive through our therapist (a mother who got into it for her own son...and then started doing it to help traveling all over the world with clients from CA to Hong Kong), and I have felt nothing but support and encouragement knowing that anything I can do will help, even if I don't do my program 100% -- which I've never done. I actually felt far more stress 2 years ago when I was driving to 6 therapy appointments in 5 days. I had little life and was tired and busy and it was very hard to do that with a walking 9 month old in tote! Yikes! For us, this book led us to our therapist and it's been a great experience.

I feel a little sheepish now though. I hope I haven't come off an idiot or uninformed, but I really did research quite a bit before we decided, and we felt good. But perhaps I should have stated the information differently in the post. I guess, I believe the biggest things is feeling good about what you do. We're religious and so spent a lot of time praying about it and feeling, actually, guided to it and our decision. But others could easily say that was false hope. For me, it's different. But it's important to feel good about whatever therapy or medicine or doctor you decide on. We felt like when we began, we were/are ok with Sammy being the way she was/is. I'm not searching for a "cure" (which admittedly it seems like Glenn Doman says he can provide in many cases) just for something that will help her, aid her, in her progress to be whatever she is supposed to be...and I'm ok if she's supposed to be just like this the rest of her life.  She's incredible this little bundle of fire!  For me, though, I need to know I've wisely done what I could.  And, that may be just being her mommy, no therapy at all.  But, for now, I think there's something for me to do.  

Sheesh, was this too long? Yep:) If anyone has further questions, let me know and I can tell our whole story, or it's in pieces on our blogs. But again, no matter what, it's so important that we feel good about what we do and choose for our children -- no matter what our school of thought -- because they're our babies. I don't think there is one Cure All out there. And Doman made me skeptical based on all his work helping a vast range of people...but it just felt right for us.

I think there are a lot of parents of special needs kiddos are able to say, "Wow.  Look at what they are doing in spite of the diagnosis."  To me, that's proof of the potential within our children.  I see Samantha doing wonderful amazing things and think, "You, little girl, are a miracle."  So, it makes me wonder...what if I were to find what works for her, that somehow unlocks the door to allow more of that to shine through?  What if I understood the brain better, how if functions, how it changes, how it's so easily molded, and use that knowledge to help her and my other kids?  For me, through priesthood blessings and prayer, I feel like I've found something that works for her, for now at least.  I haven't given up on other therapies.  We still have PT and OT in and out of school...and I'm looking into Now I Can for an intensive session.  But, I feel so much peace about our decision with this.  No matter what, though, Sammy's always our lil' Samsquatch.  One heck of a girl.

So, anyone want to read a novel? Because if you made it through this comment, you just did:) (you may be able to mark it on Goodreads! ha!)


  1. I like all of your feedback. I totally understand what you are saying - do what you think is best. I know in my (Jackson's) case, the syndrome is so new and rare that Jackson is one of the pioneers. We really do have to try everything and then see what is the best fit. So, I'm all for putting information out there and then letting each family decide. That is what our support group (7q11.23 duplication) does for the parents who are a part of our group. So... thanks for sharing!

  2. Thanks for your clarification on this Jenny. Don't worry, your original post was not misleading. I didn't think you were saying the Doman therapy was "the best since sliced bread" and was for everyone. I am glad that you mentioned the group that had separated off from Doman. That is research that I had neglected to do at the time that I found the refuting article. I have been meaning to look in to it at some point.

    I constantly go to mom blogs for support, advice, and ideas. There is no need to feel sheepish about your post. I know that none of us take decision-making lightly with our special kids. Keep doing what you are doing. And please keep posting about it because I am always interested in learning about anything that I think might benefit my Shelby.

  3. Without knowing many of the details (since I didn't read the KIDZ thing) I can relate to how you are feeling. When we run across something that we are passionate about, it is natural to be enthusiastic and want to share it. I have done plenty of that kind of thing and have met with mixed results (being ignored is one of them). Having a brain injured child and having read the book and considered taking my son to the institute in Pennsylvania a decade ago, I understand your desire to help your daughter acheive her full potential. Even if it only eased some of her frustration and the suffering that follows would make it worth it. Yet, knowing at what point to accept your disabled/challenged/different child and when to not give up trying to make their lives better is a major struggle for all of us. I feel that I put way too much into it for the first 15 years and haven't put enough into it for the last six, but I was so worn out! However, they learn the most when they are young so that's the time to be intensive. I just didn't want to look back and regret that I didn't do more for my child. You just keep doing what feels right for you--there is no one size fits all solution and you don't have to apologize to anyone for your choices. There will always be people who have different opinions and that is why they are the parents of that particular child (IMHO) because that is what that child needs. Or that is the lesson that parent needs to learn. Or whatever. Either way, you rock!



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