Do you know that any child, up to age three, who shows a delay in their development is eligible for therapy through the government?
Piper’s generation is at the forefront of a “new” law that guarantees them access to developmental therapies (physical therapy, occupational therapy, speech therapy, and developmental therapy, to name a few). The law (Part C of IDEA- Individuals with Disabilities Education Act), signed by President Bush in 2004, requires states to provide services to individuals if they have certain diagnoses (Down syndrome being one of those) or if they show significant enough delays in one or more areas. The theory, and power, behind Early Intervention is that, by the time these kids go to school, they require less help. It’s actually cheaper for the government to offer this help early on than it is to try and catch the kids up when they’re a little bigger. Brilliant, yes?
Piper is lucky to get lots of help to make sure that she’s developing alongside her typical peers. About a week-and-a-half after she came home from the hospital, we met with Becky, her new OT. She’s been coming to our home for an hour every week since then. Piper loves her, of course, and thinks that she’s coming for a play date each week. A big question I often got, when Piper weighed about 5 1/2 pounds, is what she could be working on in therapy.
In the beginning, we worked on some oral motor skills to help her eat better. Finishing her bottles was the big hurdle (alongside growing) that kept us in the NICU for seven weeks, and while she was able to eat when she went home, it was a work in progress. By the time she was about three months old, we had surpassed the bottle and moved on to nursing.
Occupational therapy is anything that’s needed for every day life- which means that, for an infant and toddler, pretty much anything. Our OT sessions have been a mix of oral motor, speech, fine motor, and physical therapy skills. We worked on crossing midline with her hands, bending (her prematurity gave her some muscle funkiness), sitting, crawling, feeding, pincer grasps, walking, spoon feeding, cup drinking…
Nowadays, we’re working on mostly fine motor activities to get her ready for preschool. She’s getting pretty good at stringing beads, she can complete five and six piece puzzles (when you have to rotate the pieces, it’s a big deal!), drawing shapes, walking up stairs without holding on to anything, tactile discrimination, and more, I’m sure.
We see the OT and speech therapists for an hour each week (you can read more about our speech adventure on yesterday’s post). They are our only “regular” visits.
We also sporadically meet with THE physical therapist at The Children’s Hospital here in Denver. These visits are not through Early Intervention, though. Pat Winders wrote the book, literally, on gross motor skills and kids with Down syndrome. And she is, quite possibly, the world’s sweetest lady. We always enjoy our visits with her, and we leave with a few more skills than when we came. We use Pat to make sure that Piper’s moving appropriately and that she’s using her muscles in the correct way. Because of the low muscle tone, our kids can develop movements that are easier, but can be harmful to their joints in the long run. One of the advantages of physical therapy is to prevent that damage before it happens.
Different states offer different services; some kids with Ds get considerably more than this, and some get less. The IDEA law has minimum requirements that the states must provide, but the specifics can vary considerably from state-to-state.
Starting on the therapy wagon is a difficult pill to swallow. It’s the first adventure highlighting that your kid is different. That they need more help. And, really, it stinks. That is until you start seeing the benefits, acknowledging the advances, and have someone who makes sure that YOU see all the wonderful things your child is accomplishing. Everyone is on the same team- they all want to make sure that your child is reaching the very highest potential they’re capable of. It’s really amazing to see all the little, tiny steps that go into something we usually take for granted. And when someone is there, alongside you, celebrating in each and every one of those little, tiny skills… Well, it’s a great feeling to see someone else proud of your kid, too, because darn do they have to work hard to get there!