Thursday, May 21, 2009

Early Intervention - who is it really for?

This started as a response to some folks complaining about how Sarah Palin holds her baby - Trig. I am not about to talk politics on this blog (again), but I will say that I find it hard to see how the family gets early intervention services for Trig when they are between Juneau and Wasilla so often, and Sarah works full time. I assume, that Todd is the primary care giver and the one present for all of those EI services. I'll tell you that the scheduling for EI is kind of tough, and of course, in Alaska, everything is far apart so there are more to the logistics, time involved for travel and such. Not to mention, I recently read an article detailing how the services in Wasilla were being cut. It makes me wonder what, if any, services Trig, and his family, are receiving? Why?

Well, this post started after reading, again, people complaining about how Sarah Palin holds Trig: like a sack of potatoes. For all of those complaining about how she is holding baby Trig, I am not about to defend Sarah. But, I will tell you that holding a child with Down Syndrome is not like holding any other typical child. All children with DS have low tone. It varies as to how low it is. Some children with other disabilities also have low tone. Tone varies from child to child. My daughter's muscles are definitely stronger now then when she was Trig's age, but for Ellie her general muscle "tone" will always be on the low side. Luckily for her (and me) it's on the high side of low.

What does this mean? It means a lot of things with regards to activities and how to teach your muscles. When you're holding a baby or child with low tone, it translates into "how well do they hold on to you". Kids with low tone do not hold back very well. That makes holding them all your job.

Here's what that really means using Trig and Sarah Palin as an example. I'm guessing Trig weighs about 20 lbs now. So, imagine taking 20lbs of cooked spaghetti noodles (the long thin kind) and putting them into a ziploc bag. Then carry that bag of cooked spaghetti as if it were your child. That's about how it feels on your arms, shoulders and back. So, it's easy to end up carrying a child with low tone like they were a sack of potatoes. I'll admit that on a few occasions I may have done that because I was sooooo tired. I work out and keep myself in good shape, just like Sarah so most of the time, I don't feel the weight of carrying a child with low tone. It's only when I'm tired that I feel it.

But, watching Sarah carry Trig that way, REPEATEDLY, is why Sarah Palin makes me sooooo mad. She tells us now, repeatedly, how she knew while pregnant that Trig has DS, and that she made the conscious CHOICE to have him. That she considered abortion, and she chose LIFE. God bless her, and I commend her for that choice. It's not an easy one to make. HOWEVER, having made that choice she has not shown publicly how she is following up on that choice with the other ones that would seemingly follow. She runs regularly and keeps herself in good shape. There is no excuse for carrying her son like a sack of potatoes. Unless you are putting ALL of your wants and desires ahead of your child's needs. A child with DS needs EI in order to have a greater chance at a lifetime of independence. Parents of a child with DS need EI in order to learn how best to parent their child. There are things you should do differently when raising a child with DS that aren't intuitive and are not always easy to find in a book. EI services help you learn these things, they help you become a better teacher to your child and address his or her unique learning style.

Children with low tone benefit greatly from early intervention. More importantly, their parents do too. So those parents can learn how to teach their children how to learn how to do things. What I mean is that children with DS learn one way. They don't learn by making mistakes. To Help them, you must help them "model' the right behavior the first time (and the first 100 times) they practice something new. This is counter-intuitive. As parents, we expect our children to learn FROM their mistakes. Children with DS learn to REPEAT their mistakes. So, as a parent, Early Intervention is extremely important in teaching my child how to learn new skills RIGHT THE FIRST TIME. That takes a lot of thinking ahead, and planning.

Here's a recent example of how this works. We were at school the other day. Ellie was trying to climb into the chair at a table in the library. She was struggling to motor-plan. That means she was struggling to determine where to put her hands, arms and legs in order to pull her body into the chair so that she could turn and sit in it properly. In order to help her learn how to do it right, I had to look at what she wanted to accomplish and figure out where she should be placing her body parts to effectively pull herself into the chair. Then I had to do two things. First, get her to let me help her place her legs and arms in the right spots. Secondly, I had to give her just enough (but not too much) of a boost up as she tried to pull herself into the chair. She got it! After I helped her plan it right she practiced it a bunch the right way with out my help.

If we had not had early intervention - I wouldn't know to do those things. I would just solve her problem for her by picking her up and putting her in the chair. Now she knows one more thing than she did before. Now she is one smaller step towards independence. I worry about Trig and children like him. When the parents don't get the Early Intervention they don't know how to keep helping their child learn as they grow. Those children are at a disadvantage for having the best chance to be independent as adults if their families don't know how to teach them independence as children.


Beth said...

I agree, up to a point...I think there are many many families that get some sort of EI services and end up with the same Trig Palin situation. It is frequently because the EI service providers are not trained well enough to give the proper instruction. There is also a good contingent of parents who leave the "therapy" to the professionals, and they never learn how to foster their child's development. There is also a difference between how the primary caregiver interacts with the child vs. the "adjunct" caregiver. (Far be it from me to actually come to Sarah Palin's defense, but my husband didn't get to sit through hours of therapy and learn and implement all the techniques I did.)

There are also many families that don't pursue EI because of cost or principle (anti-government or religious ideology). These families tend to look for alternatives to the mainstream approach for helping their child.

Yes, if a parent wants to do the best for their child, they do need to learn methods to enhance development, somehow, some way. But it doesn't have to be through Early Intervention. I have had experience with therapists teaching incorrect methods which end up complicating development rather than fostering it.

It sounds like Ellie has had competent service providers and you have learned much from them. That's terrific! But that is not the case in most of the nation.

Genette said...

Thank you for your thoughtful post RE the value of EI and for putting words to the sadness I feel for Trig Palin every time I see his mother carelessly swinging him around.

I disagree with Mrs. Palin politically and that colors my thinking of her, I confess. I do not like for the world to see her as THE model of moms of children with Down syndrome.

From the first time I saw her holding him I have been muttering corrections to her a la "support his upper torso muscles so that he can concentrate energy to his neck muscles and learn to support his head!" My Google search to find you was "Does Trig Palin get early intervention therapy?" I pray that I'm wrong and he IS getting good help and just is tired when I see him onscreen. Every child who has a harder time learning to do things deserves that extra help. May God bless little Trig with good therapists and his primary caregiver with the patience to follow his treatments and give him the best chance for success and progress.