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Tips and Testimonials

One Mothers account of how they got started:

When my husband and I decided to try Paul (at the time 13 months) on the CMF Protocol, we wanted to have something by which we could definitively measure his results (besides our anecdotal observations and notes). After much thought and consideration, this is what we did. Before we started the protocol, it was time for Paul to have all of his annual evaluations through the Early Intervention program. We waited for all of his evaluations to be completed. This included evaluations by his Physical Therapist, Occupational Therapist, Feeding/Speech Therapist, and Music Therapist (she is a Developmental Therapist). After all of his annual evaluations were complete, we started Paul on the protocol. *WE DID NOT TELL ANY OF THE THERAPISTS THAT WE WERE STARTING PAUL ON THE PROTOCOL.* We did not want to in any way bias or taint their opinions on his progress.

Next, I went back through all of the previous evaluations I'd received from his therapists over the past 13 months and plugged their evaluation information into a spreadsheet. For example, his Physical Therapist uses the Peabody Developmental Motor Scales-2 (PDMS-2) to measure his Gross Motor Skills. For each of his previous evaluations I could simply look down the column and see what his age equivalent & percentile was for each of the subtest categories (ie - Stationary, Locomotion, etc.) and see how many months progress he had made BEFORE starting the protocol. I did this so I could compare those results to his evaluations AFTER starting the protocol.

I made sure that in our IFSP meeting I asked that he be re-evaluated every 3 months in PT and 6 months in OT.

This spreadsheet approach has given us some perspective on the rate of progress Paul is ACTUALLY making (while on the protocol) vs. the rate of progress he was PREVIOUSLY making (before the protocol). I've read where an opponent to the protocol claims that kids on the protocol are "making progress within the normal limits of children with Down syndrome." And this is what I have to say to that. . . I am not comparing my child to other children with Down syndrome. I am not comparing my child to other "typical"

children. As with ALL children each child will progress at his or her own RATE. I am comparing my child's CURRENT RATE of progress (while on the

protocol) with his OWN

PREVIOUS RATE of progress (before starting the protocol). I think that this is as accurate of measure (in the short term) that one can get for their individual child.

What do you think of this system? What are you using to measure the results of your child while on the protocol? My husband and I are very "black and white" people, meaning we want to see in "black and white" what is happening while our son is on the protocol. So far, we are VERY pleased with the results.