Babies and Early Intervention

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.


11 Comments on “Babies and Early Intervention”

  1. Jennifer Varanini Sanchez
    January 26, 2011 at 11:21 pm #

    I absolutely agree Lisa….and I would be a mom that could have been considered a “therapy” whore :)…..but now I’ve seen the light and although I’m not courageous enough to let go of EI completely I am going to back WAY WAY WAY down. I’m going to treat therapy more as a consultative thing after all Sofia is my SECOND child with DS so I’m probably more of an expert than any therapist now on helping a child with DS. So….thank you for this post. I hope to write a similar one thanks to the golden nuggets of info I got from Kathie Snow’s presentation. I feel more empowered than ever to take back my family time and my children’s childhood experiences 🙂

  2. esther
    January 26, 2011 at 11:26 pm #

    lisa, i totally agree as far as “when kids are ready, they will do it”…it’s the same with my twins, who were not born with an extra chromosome. at 29 months, they are not ready to ride a tricyle, despite the fact that their little girl friend does already and has for months. well, my boys are not ready. simple as that. my boys were not understanding the concept of colors a month ago- everything was blue..i left them alone because i knew better. well, today, they know 8-10 colors perfectly..because THEY were ready. i donot see why it would not be the same with a child born with down syndrome….you are right…and go Finn!

  3. Casey
    January 27, 2011 at 12:59 am #

    Could you email me or direct me to a link(s) pertaining to helping your son with his feeding issues? I’m on the same road and would love some advice from a Mama who did it on her own. Thanks.

  4. meriah
    January 27, 2011 at 6:19 pm #

    This is really thought-provoking…and interestingly enough, I had just written about my feelings on therapy – .

    I’m still on the fence about it all…not entirely convinced that it’s all bs, but thinking that it’s for sure that nothing is going to happen unless and until the brain+body are ready for it. And so yeah – who do you thank?! Is it the chicken or the egg?!

    Great post. I might have missed it if it hadn’t been shared on the babycenter board!

  5. Brandie
    January 27, 2011 at 7:57 pm #

    I think you hit the nail on the head when you said ” we need to provide them with opportunities…” Looking back, I think we could have done without a lot of Goldie’s therapy. It burns me up when people say “look how well she is doing. Its because you had those therapists come to your house.” How ’bout giving my kid some of the credit? SHE is the one who chooses to eat her peas with a fork while I’m saying just use your spoon.

    While we do take her to private speech and OT, Goldie does NOT have an IEP. No preschool this year, either. I decided the whole process was so stressful and negative and of no benefit to my daughter. There are so many more positive ways to spend my time than fighting with EI.

  6. Mumofone
    January 28, 2011 at 10:43 am #

    An absolutely insightful post on why we should always think about what we do for our kids and whether WE think it is best for them and not blindly do it because someone else is or because we’re TOLD to.
    You know what – I think it applies to “normal” kids too – why else are there so many parents putting their kids in after school classes for maths/reading/english etc +/- sports programs +/- intensive music programs. You see so many kids being pushed to be brilliant. If it wasn’t so easy to make us feel so insecure as parents then all those people pushing parents to send their child to maths coaching to be the next John Nash or spend hours and hours playing the piano so they could be the future David Helfgot or playing golf age 9 so they can be the next Tiger Woods – would have no power over us.
    The recent furore over the book by Amy Chua “Battle Hymn of the Tiger Mother” is an excellent example of how to make parents feeling guilty about not doing the absolute utmost 120% best for their child. Its society that makes us like this.
    Good on you Lisa for saying it like it is and reminding us all to say “bleh” to society and expectations and assumptions once in a while 🙂

  7. Melissa
    January 31, 2011 at 4:36 am #

    We see Pat Winders for PT and she and I just recently had a similar conversation (mainly about supplements, not therapy) but I loved her comment. Claire had a recent gross motor explosion and Pat was thrilled to point out that when huge achievements are made you have to give the kiddo credit! She said that it wasn’t us as parents, or her as a therapist that did this, but Claire. That she just ‘got it’! While we can help and guide, it’s up to our kids when they do things.

  8. Lee
    May 2, 2012 at 6:27 pm #

    I agree with you my son does not have DS but has been diagnosed with hearingloss and developmental delay . He is currently under the EI program and I think it’s completely crap . They come for one hr a week and tell me what I should do and then when he makes a natural progression they take all the credit . My son walked at 15 months ,now because he was already in the program because of his hearingloss ., he didn’t have to be ” qualified” so I was pushed into taking PT and when he did start walking some how it was the magic of therapy . Now I think it’s more of a curse then boon with all the nitpicking and add more therapy .I am seriously considering to take him out of the program and just let him develop normally .

  9. theeisforerin
    October 10, 2012 at 12:54 pm #

    I just love your iconoclastic take on things Lisa! This really resonated with me. A couple of people close to us have suggested EI for Miles and his supposed speech delays, which I’m not even convinced he has. I hardly know anyone with a 2 year old boy who is NOT in speech therapy these days. And yet they all seem to say, “I don’t know if it’s made a big difference, but I’m still glad we did it.” I feel like we have all bought into this oddly corporate model of “maximizing potential” in our children as if they are profit margins and not people. But I am just getting that feeling w no personal experience of EI, so it’s interesting to hear you say that having done it.

    • Lisa
      October 10, 2012 at 2:20 pm #

      I know, Erin! Even before I ever had Finn, I noticed that everyone and their brother seemed to have their kid in speech therapy. I remember a mom in my MOMS Club was asking for advice because her almost 2 year old wasn’t saying many words and she was worried and I caught hell from a bunch of the moms for theorizing that “speech delays” had become the diagnosis du jour and that every kid is different, they all develop at their own pace, etc. etc. One of the moms who had a daughter with Down syndrome (keep in mind I didn’t yet have Finn) was really upset with me and told me I might see things differently if I had a kid with special needs. Then I had Finn, and guess what – I still think “speech delays” among the general population of kids is kind of BS. I don’t know what it is – maybe part of this whole competitive parenting culture we live in? Or is it that everyone is afraid of autism? I don’t know.

  10. Carolyn
    November 15, 2012 at 7:04 pm #

    Oh My! My DS son, Chris, is 52. There was no help or information in 1960. He has lived to comb some gray hair and blessed our lives. Perhaps there were floppier babies than Chris, but I cannot imagine any more floppy. We just had trial, error and great love and devotion, no (professional) advice (lots of other well meaning advice). My Dad, the grandfather, harked back to the days when children had polio. He had had polio resulting in a withered leg and foot. He advised me to move Chris around, which I did. I ended up spending a great deal of time with him on a blanket on the floor. We played. Initially I got toys so that if he moved a hand or foot, something would chime. Of course, there were not the elaborate learning toys that we have today, but we had a bird mobile, balloons…old fashioned things. Mostly we played. I loved playing with Chris, he was so responsive, so fun. But……….I have been at Easter Seals and watched ‘speech therapy’ that begins with feeding, wondered if formal Early Intervention would have helped Chris. He himself figured out a way to sit up, a way to crawl dragging one leg, began walking at 20 months when we had gone on vacation and left him with grandparents (kids!). The grandparents participated in the play and we enjoyed Chrissie so much! I have always wondered and felt regret that we did not have the professional help and advice that came later….I have said “we did our own Early Intervention”… I see both sides of this issue.
    I read everything the National ARC had and whatever else I could find. The theory I came up with was that Chris was a baby and then a child, he should be brought up as carefully as any other child, it just took more of everything, more emphasis, more time. I like it so much when I see your poster “Just As I Am”. We only had that, great love and perseversance to go on. Anyone that wants to critique me and my ideas and methods can. During my ‘crying time’ I might have welcomed the help and interruptions, at least reassurance. I decided to enjoy my beautiful baby and was fortunate to be a full time mother who liked to play.

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