Down Syndrome Awareness Month: Early Intervention/Therapy

I've been struggling to write this post for a couple of days now, writing it and rewriting it, abandoning it and then restarting. Although this is an important topic that I think warrants discussion during Down Syndrome Awareness Month, I seem to be having trouble finding the right words, and I don't want this to come off as a rant against Early Intervention and therapy.

The truth is, though, that I'm not a fan of Early Intervention or therapy - at least not for babies . . . at least not for babies with Down syndrome . . . at least not for my baby with Down syndrome.

Early Intervention is something I've spent much time agonizing over during the two+ years of Finn's life thus far. Is Early Intervention really necessary? Is it even actually beneficial in any real, tangible way? What about the downside? Do the supposed benefits outweigh the inconvenience and intrusion on our family? Does it foster a perspective of Finn being "defective" in some way?

When we learned that our baby had Down syndrome, the first "line of defense" offered to us - when he was a mere few days old - was the therapies and services available through the State, collectively known as Early Intervention. I remember that, in my sleep-deprived, shell-shocked, grieving state, I was taken aback by the social worker who sat in a chair across from me in Finn's little room in the NICU, telling me that Finn would need to go to "baby school." "As a newborn?" I asked. "Well, you want him to be the best he can be, don't you? Of course you do. Then yes, this is what you will need to do for him," she told me very matter-of-factly.

And so it goes for most new parents of a baby diagnosed with Down syndrome. The weakest spot in any parent's armor is a place where fears and hopes reside, and where guilt can magnify those fears and hopes. Add in a diagnosis, and the weak spots are even further compromised. What does it all mean? Will therapy make him more "normal"? Will lots of hard work help him overcome his disability? Can we manipulate him to be minimally impacted by his diagnosis? Should we try to?

So within a short time after Finn was released from the NICU and came home with us, there began a parade of social workers and therapists who came out to our house to examine and evaluate Finn and construct his first IFSP (Individual Family Service Plan) which contained developmental goals for him to strive for, and a plan of action to achieve those goals.

Over the two+ years of Finn's life, we have undertaken PT (physical therapy) for the first year and a half to address gross motor skill delays, OT (occupational therapy) for the past eight months to address feeding issues and fine motor skill delays, and ST (speech therapy) for the past three months to address speech delays. Has any of it made a difference? No, I do not believe so. Having had five babies before Finn, I clearly see that Finn, just like all his siblings before him, continues to progress, master skills, and reach milestones on his own time line. I cannot attribute a single gain he has made directly to therapy.

I know this is a controversial and, frankly, unpopular position. There are a lot of families out there who are firm believers in therapy, and the more the better; families who believe that early intervention services is going to make a huge long-term difference in their child's skills and abilities, and that they should fight for every service available because their child is entitled to them. I'm just not one of those parents. I've watched my other kids master skills and develop their own strengths and talents in their own time, and Finn is no different - his time line is just a little different, that's all.

And yet, even having had five babies before Finn, and seeing them all do things a little differently (one walked at 12 months, and another not until 16 months; some talked earlier than others, some potty trained earlier than others, some became voracious readers at age 5, and some didn't; I could go on - seriously, watching my kids is like watching a live science experiment), I still got sucked into the whole Early Intervention mindset when Finn was a newborn.

If I had it to do over again, knowing what I know now, I would opt out of Early Intervention altogether. I wish I hadn't expended so much energy agonizing over it - will it help him? am I cheating him by not having him in more therapy? or is this all just a waste of time? I wish I hadn't expended so much energy being resentful of demeaning and dehumanizing evaluations, of therapists who can't be on time, of the intrusion on our life as a family. I wish I had had utter faith that Finn would do his thing in his own time.

Hindsight is 20/20.

I've become a big believer in life as therapy. I think Finn's best therapists are his family members - the people who spend every day with him, who love him and shower him with affection, who act as role models for him, who encourage him by including him - not the Early Intervention therapists who spend an hour a week with him.

I also believe that I can serve Finnian best by being a loving parent to him and not a therapist. I don't think every interaction with him should be therapeutic or designed to encourage some skill. What a drag for him that would be, to constantly be in "student" mode. But this is another pressure a lot of us parents seem to feel - that we constantly have to be interacting with our children with Down syndrome in a productive, educational, and therapeutic manner.

I think it's possible that Finn will benefit more from interventive services when he's older. Just like trying to teach a a person how to drive a car or do calculus is far more productive when they're sixteen rather than five, I think the same can be said for Early Intervention; they probably get a lot more out of it when they're older, when their brains and bodies have matured enough to absorb it all.

Along with this, I think it's imperative to respect their limitations. A child with Down syndrome is never going to have the same global abilities and skill levels as a "typical" child. That's just a fact. And it's a bitter pill to swallow when you've been given the shocking news that the baby you have is not the baby you thought you were going to have. But if we, as parents, can make peace with that - that, yes, "more alike than different," but still different, and different is okay, I think we could save ourselves a lot of heartbreak and angst. I truly think that in this way, Early Intervention is destructive - it fosters a mindset that our children are broken and can be fixed, that life is more valuable the more one is able to achieve. I don't want Finn to grow up feeling that we see him in that way, and I don't want my other kids to see Finn that way.

That is not to say that skills and abilities should not be encouraged, or that we should just let our children languish. I just think that children with Down syndrome - at least babies with Down syndrome - learn the same way their typical peers do: by being allowed to be inquisitive, by being allowed to explore, by being loved and played with and stimulated with talk, song, hugs, and play.

We quit physical therapy almost a year ago, and I've never looked back. Finn has continued to master gross motor skills in his own time, most recently by taking his first independent steps and within a couple of weeks becoming an almost full-time walker. Pretty soon we will be opting out of OT and ST, thanks to new regulations here in California which require families to procure services through their health insurance carriers before the State will cover them. Our health insurance carrier has approved coverage for services for Finn, but practically speaking, what they're offering us is too inconvenient to be feasible for our family. I am actually relieved. I finally have an out - we can quit Early Intervention and I don't have to feel bad about it.

I don't know what will happen next summer when Finn turns three and ages out of Early Intervention and becomes the responsibility of our school district. I'm not so sure that I'm going to jump to send him to preschool when he's three. I'll cross that bridge when I get to it, but what I do know for certain now is that I'm not a fan of going along with what is prescribed if I don't actually feel it's in the best interests of my child and my family, taking into consideration our unique circumstances, needs, and goals.

So if I had the opportunity to speak to new parents of babies with Down syndrome about Early Intervention, I'd tell them this: consider your options. Consider putting off therapy for six months or a year, and just spending that time falling more and more in love with your baby. Consider minimizing therapy and only doing it once a month. Consider refusing any services that don't meet your family's needs (like services that require you to drive across town, or services with time slots available only during what is your child's nap time). Consider opting out altogether.

There is something to be said for just being.