Tuesday, March 1, 2011

The therapy game.

Last week I blogged about Charlotte's Developmental Follow-up at the heart center. One of the recommendations in the report from the doctor was to increase PT to twice a month (currently she receives PT once a month) and add short-term OT after her hand surgery.

I emailed our Birth to Three coordinator the doctor's recommendations, and immediately received a response saying that the evaluation done at the heart center was not consistent with the one B-3 had done the month before. However, she would check into it and let me know.

Basically, it boils down to this. Outside evaluations done by therapists and doctors are always going to recommend increasing therapy. They go by the philosophy one can never have too much therapy. Birth to three looks more at the financial aspect of the therapy, however, I feel they evaluate a child using everything they know about that child, not just the skills they demonstrate during a certain evaluation. For example, at the heart center, Charlotte tested at a 6-month level (at age 8-months) for gross motor skills. This is because she cannot sit independently. It is very cut and dry. It doesn't matter that she has most of the skills required to sit, if she doesn't demonstrate independent sitting, she doesn't get the credit. Same with crawling. She doesn't crawl, true. Yet, she gets up on all fours (which is I am told is unusual for kids with low-tone at this age), scoots backwards, pivots in a circle, and pulls forward with her knees. These are all pre-crawling skills, but because she isn't crawling, no dice.

Being in the education field, I know to take the "black and white" of evaluations with a grain of salt. The evaluators are taking a 10-minute snapshot of my child and telling me what she needs. Charlotte's extra chromosome pretty much guarantees her a childhood full of different types of therapy. As a parent, I have been told I will need to push and advocate in order to get Charlotte the services she needs.

This brings me to my dilemma. What does she need?!? Right now, she is doing fantastic. I have said it before, and will say it again, Charlotte is a rockstar. I know I am biased, however I am blessed to have a huge base of friends and family in the education and therapy fields who will not hesitate to let me know if I need to take off the rose-colored glasses and get my girl some help!

I am having a hard time subscribing to the "Your child has Down syndrome, so she is not going to do....." theory. YES, my child has Down syndrome. YES, my child has low-tone. However, if my goal is to keep her life as typical as possible, I need to get past these generalizations and see Charlotte for who she is, and not look at the effect that 47th chromosome is supposed to have.

Which means for now, I'm not going to push for more. After taking into consideration what the professionals tell me, I am going to go with my mommy gut on this one (and of course Mike and I have discussed this at length as well; I don't want everyone to think he doesn't get a say in this, he is a very active part of our children's lives!). The second I see Charlotte not progressing, I will be on the phone playing the therapy game. Until then, I am going to continue to let my girl impress me, all by herself.


  1. Wow, you are speaking right to me! I have been putting off blogging about a similar dilemma I'm having but in the opposite where B-3 is saying no more is needed and the nurse at the Ds clinic said to check some things out. My mommy gut is saying more cuz Cal is not doing much besides rolling. He is not pushing up yet. So hard. But is does sound like she is truly doing awesome so I think you're okay waiting until she shows she needs it.

  2. It is hard is it? As a parent, you don't want to make the wrong decision that you will regret later, yet it is hard to know what is right! Hang in there Ilisa, and keep pushing for what you think Cal needs.

  3. I think you are right to trust your mommy gut, you know Charlotte better than anyone or any "test."

  4. Great post Emily, you are such a wonderful Mommy and I think it is awesome that you are able to weed through all the "shoulds," "coulds," etc. and be confident in Charlotte to tell you what she needs!


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