Friday, March 6, 2009

Question and Answer

First, let me say that I do not claim to have all the answers, or all the questions for that matter. But I do feel that my training and my work experience has helped me to understand what John needs and how I can help challenge him.

It is also my hearts desire that other parents of Down syndrome children be educated in understanding how to help their child. The worlds version of the story is that children with Down syndrome have very limited potential, but it is my opinion, and hopefully other parents of children with Ds, that our children indeed have more potential than they are given credit. I realize that most children with Down syndrome see a Physical Therapist on a regular basis which I advocate doing. It is also preferable that your Physical Therapist be the one who instructs and educates.

But sometimes, Physical Therapists either do not take the time to educate or do not feel that education is part of their job. So, I wanted to write this entry to make myself available for any questions. While I am not able to provide specific information about a particular child (except for John), I will be glad to offer any information and support that I can based on my experiences as one who has worked in the field and as provider for John. And I am more than happy to answer any questions about John.

My desire that no parent should feel at a loss of knowing how to teach their child has prompted me to write this post. And I feel that is the case with some and that shouldn't be. I am hear to tell you that there is more hope for your child's future than you are led to believe.

So with that said, I offer this post. Questions may be posted in comments or emailed to me directly. I will try to answer questions as they arise and I will include the questions and answers in a future post.(Can you tell that I miss my job?).


datri said...

Do you think most kids with Down syndrome need foot orthotics? I've always heard this, but our neighbor's kid (with DS) doesn't have them and her mom didn't see why she should get them since her kid walks just fine and has a normal gait.

Tausha said...

Have you ever heard of the reading program called Eproreading? A lady from Canada created it and taught a seminar last week in SLC, UT. It sounded like it would be helpful but it's also $300. I wonder if you know of any other programs out there that people use to teach their DS kids to read? My husband and I are just not sure we should spend that kind of money on a reading program? Thanks for any info you can give.

Jeanette said...

I also want your thoughts on orthotics. Sydney is cruising and we are working on walking. I have a friend who is rather agressive with therapies on her daughter who is 3 months older than Syd. Also, what are your thoughts on SPIO trunk supports. Again, the same freind has her daughter in SPIO all the time. Right now I have Syd in ECI, but no OT, PT, or ST. I always wonder if there is more I should be doing. Sigh, I think this is a life long battle of balancing things... anyway, what are your thoughts on these things.

Andy and Ellen Stumbo said...

No questions...yet.
I am so glad that you are doing this. When I wrote the post so people could ask questions, I thought about the great resource you are as a physical therapist and how we can all benefit from your are of expertise. I think you are the right person to ask about our questions on anything that pertains physical therapy and our children. The fact that you "get it" because your child has Ds, is something that makes the difference.

My questions will come. You will see :)

Carolyn said...

I am in Australia, and my daughter is a couple of months younger than John. She was born 9 weeks early on 23 September.
The only PT we get is going once a month to a preemie playgroup at the hospital where she was born. We do a lot of tummy time with her, including a Lamaze toy which is a ladybug that the baby lays on face down. It is a lazy susan that spins around on top of a play mat. It is great, because she has to hold her head up when she is on it. Having said that, she can only cope with a few minutes at a time.
We are also teaching her to roll over, as she has no interest in doing this herself.
She is pretty floppy with her head movements, but overall her muscle tone is good.
Like John, she has had gagging problems, but to a worse degree. She has mild laryngomalacia and also aspirates when feeding and with reflux. She desats during this also. She is finally mostly breastfeeding, with bottle supplements and ocassional NG tube feeds.
We are currently supplementing Samara with TNI (Nutrivene D, Piracetin, EPO's and Probiotics)
We are Christians, and Samara is our 7th daughter. We homeschool our children, and have been living in Australia for almost 2 years after emmigrating from New Zealand.
Thanks for sharing your journey, I will try and keep following your blog....