I was reading a friend’s blog recently – another parent who has a child Finn’s age with Down syndrome. In this post she recounted how they recently started with a new physical therapist, and this therapist, upon meeting them for the first time, wondered aloud why my friend’s child isn’t walking yet, and thereafter emphasized the importance of “getting him to walk as soon as possible.” I was appalled reading this, and it brought back memories of our own experiences with physical therapy, and how Finn’s therapist was so determined to get him to walk as soon as possible – so determined, in fact, that she would put weights around his ankles, hold him up by his hands, and make him “walk” laps around the living and dining rooms while he cried. It was torture to watch, and every time I expressed concern about this method and about her goals for him, she reiterated to me that if I wanted what was best for Finn, if I wanted him to “reach his potential,” then I had to take a tough approach. Eventually it became too much, and it also became clear that my goals for Finn and her goals for Finn were not in alignment with one another, so we dumped PT altogether. After a lot of reading and soul-searching, I decided that it just didn’t matter to me when Finn walked – that he would walk and do everything else in his own time, and physical therapy wasn’t going to change that.
Still, we did brief stints with speech therapy and occupational therapy after dumping PT. At the time, I was extremely concerned about feeding issues Finn was having (namely, a pretty severe texture aversion, a pronounced gag reflex; because of these issues, at 18+ months old he was still strictly on purees), and yes, his lack of communication skills. And I thought therapy could possibly provide the pieces to these puzzles that I was so obviously missing. It became clear pretty quickly, however, that neither of these therapists were engaging in rocket science; in fact, they really weren’t doing anything at all that we don’t already do with Finn naturally.
So when the State of California, in its current economic crisis, changed accessibility to early intervention services and began mandating that families seek services through their health insurance carriers first, I saw it as the perfect out. Out of early intervention. No more therapy for Finn. Done. Finito.
It’s been a couple of months now since Finn has had any formal therapy, and I have not looked back. He has continued to make gains in all areas – gross motor, fine motor, and communication – despite no longer being the target of therapy.
How is this possible? How is it that he has figured out how to pick up a step stool and carry it around the house, placing it in strategic locations that allow him to climb and retrieve objects he couldn’t otherwise reach? How is it that he puts a toothbrush in his mouth and (rather clumsily) mimics brushing? How is it that he grabs a comb from the bathroom counter (reached by way of said step stool) and tries to comb his hair? How is it that he hears music and is instantly moved to dance? How is it that he places a hat on his head and grins, knowing exactly how amusing he’s being? How is it that he says, “okay” when told to do something (sometimes . . .), or “uh oh” when he drops something? How is it that he tries to do the finger movements to Itsy Bitsy Spider? How is it that he eats a PB&J sandwich like any other kid?
I’ll tell you how: he’s a kid. He learns by observing, like any other kid. He learns by being given opportunities to succeed (or fail).
Therapy is grossly overrated. I know this is a wildly unpopular position to take among parents of kids with Down syndrome, but that’s my take. A whole industry has been built around services and therapy for kids with Down syndrome. They all seem to feed on parents’ deepest fears and hopes for their kids. We, the parents, are told from the time of our tiny babies’ diagnoses that if we want them to reach their full potential, this is the path we must travel. The unspoken message is: if you want to be a good parent, this is what you need to do. And what do we know? We’re shell shocked by the diagnosis. The rug has been yanked from under us; suddenly we have a baby we feel we know nothing about (this certainly isn’t the baby we had hoped or planned for!). And we just want, more than anything, for everything to be okay. We want to feel like we can get a handle on this whole Down syndrome thing. So we listen to the “experts” (very few of whom, by the way, are parents themselves of children with Down syndrome), even when it sometimes means decidedly not following our hearts, and we allow ourselves to get sucked into the whole early intervention way of life.
I call bullshit on it. Therapy for babies? It’s silly. And for anyone who believes in the power of therapy – how do you quantify it? It seems to me that it’s like trying to teach a one-year-old how to ride a bike. You can spend hours and hours, weeks and weeks, months and months, trying to get that baby to ride a bike, but until his body and brain mature to the point where he has the right synapses firing and the right mastery of motor planning, he’s just not going to have the ability to ride that bike. It can’t be taught before the student is ready to process the information and act on it. And eventually, three, four years down the line, that child will, in fact, master the skill of riding a bike. So do you then say, “All the therapy paid off! Look at him go!”?
All the hours of our life that we allowed to be intruded upon by therapists during Finn’s babyhood? I wish we had just spent those hours letting him be. I don’t believe any of the therapy he received made an iota of difference in his development. What it did do was cause stress and resentment and guilt and pressure. It didn’t make him sit up or crawl or walk or sing or sign or eat a minute sooner than he would have otherwise, and I am as sure of that as I’ve ever been about anything.
It’s not that I think early intervention is a scam. I know that these therapists really believe in what they do. Most of them are at least fairly passionate about it. But they’ve been conditioned to believe in it, much the same way obstetricians are conditioned to believe that hospitals are the safest places for babies to be born – even if the facts don’t bear that out. Their livelihoods depend on believing in what they do, in the services they provide.
I haven’t studied the history of Down syndrome in a lot of depth, but what I suspect is that at some point, thank goodness, there was a movement whereby it was realized that people with Down syndrome should not spend their lives in institutions, that remaining with the families who loved them would benefit them much more. This must have necessitated people then trying to figure out how to “deal” with Down syndrome, and I’m guessing that’s where early intervention was born. The thinking must have been something like, “With intensive teaching and therapy, we can make them reach their full potential.” It’s certainly easy to see the logic in that.
My belief, though, is that early intervention has played a very, very small part in improving the lives of people with Down syndrome over the last few decades. What, I think, has resulted in the greatest positive impact has been a better understanding of medical conditions often associated with Down syndrome, and therefore better medical treatment, and just plain love and inclusion in regular family life. Opportunities to explore their worlds, and to succeed and even fail (failure and frustration both play a huge part in motivation to attain new skills). These are the things that have turned things around for people with Down syndrome.
I think it’s time for another revolution in thinking about children with Down syndrome. We need to acknowledge, accept, and embrace their differences – yes, they are slower to learn things than typical kids. That’s okay! It doesn’t mean they won’t learn, it just means it’ll take them longer. There is just no need to push a baby with Down syndrome to walk “as soon as possible” or to do anything else. He’ll get there. When he’s ready. Not a moment sooner, not a moment later. Just like any other baby. We need to provide them with the opportunities to explore, to succeed, and to fail. To learn, to grow, to feel valued exactly as they are. We need to have faith in them instead of placing our faith in professionals who can “fix” or “improve” them.