Therapy Begins

As the creators of the Toothbrush Pillow are finding out (new parents of a little one with Down syndrome), therapy for our children is a world in and of itself. Talking with Lee (co-creator of Toothbrush Pillow) the other day took me back to those first months with Caleb, trying not only to figure out what Down syndrome was, but how it would impact him physically and cognitively. We found out about “Early Intervention” and that story began for us, and him.

Since we didn’t have a prenatal diagnosis, contacting our state’s Early Intervention program took some time. I had to catch my breath, digest all the medical information, and enjoy him for a bit before we dove into the routine of weekly therapies. Since we weren’t assigned a social worker at the hospital, it was information from our local Down Syndrome Association, and in talking with other parents, that clued us in to Early Intervention.  Four months after his birth, the “Early Steps” team visited our home for an evaluation.

Having raised a “typical” child previously, I had no idea what to expect. And since there were 17 years between our two kids, I had a hard time remembering what a baby should even be doing at 4 months of age. It was a fine “check to the gut” when I was informed that he was already behind in his skills, and was indeed a candidate for the Early Steps program. But as hard as it was to hear those words, and see those graphs, I knew deep down that therapy would help him become his best.

Early Intervention is a national program, mandated through IDEA (Part C).  Each state has its own version of it, and its own set of laws that govern their program.  Children ages birth-3 can benefit, and must complete an evaluation to be deemed eligible to participate. In the case of children with Down syndrome, the condition-related delays warrant services in most cases. Down syndrome often manifests in low muscle tone throughout the body, and cognitive delays. Other issues may be present – vision, hearing, cardiac, etc. that will come into play. Each child is different – each will have a unique plan. Once the evaluation team has completed their assessment, this plan can be developed, to work on strengthening those areas that need help, and keep delays to a minimum.

In Caleb’s case, we needed it all! Physical (gross motor), Occupational (fine motor), and Speech/Language were all incorporated into his plan. Additionally, we saw a ITDS (Infant/Toddler Development Specialist) who looked at his overall progression – the areas listed above, as well as his social and emotional growth. Did he recognize his family? Did he interact appropriately? Those and other not-so-evident skills were the objects of Ms. Beverly’s visits.

At last, we had our plan! Our IFSP (Individualized Family Service Plan). was developed, and at just five months, our little guy was headed to see his first therapist (and still a good friend today), Ms. Megan, his Occupational Therapist. PT, ST and ITDS began shortly afterwards, and we were soon in a groove with the six-seven different therapies each week. Some came to our home; some we had to drive to the clinic. Early Intervention is usually designed to be a home-based program, but the availability of therapists might make office visits a necessity.

One of the benefits of being in the Early Intervention program, for us, was the knowledge his therapists shared with David and I. Learning proper positioning for rolling over, sitting, crawling – you name it. The importance of crossing mid-line. How to position the spoon so he learned how to eat correctly. With a typical child, you take that all for-granted. There were many lessons learned, and we loved the support and encouragement these ladies gave us. There were hard days, for sure. Days when I thought he’d never walk or talk. Therapy is work, but it can be fun work with the right help and proper techniques.

Early Intervention therapies are recommended for most children with Down syndrome. Your family’s lifestyle, other children in the home, and schedules will play an important role in how it happens. Your other children can be great “therapists” too, through play and interactions. We certainly found our Early Steps program to be beneficial. Would love to hear how you find your state and local program’s effectiveness.

We “graduated” from Early Intervention when Caleb turned 3, and headed into the school system (another post for another day!). We had a difficult time saying “so long” to the wonderful ladies who helped us in the first part of our journey. Thankfully, we still get a chance to see them every now and then, and it’s fun for them to see his progress.  We will always treasure them!

Look for more information about Early Intervention on the NDSS website or by visiting the Early Childhood Technical Assistance Center.

Peace,

Karen

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