Sunday, October 24, 2010

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.


Csunshinegirl said...

Thank you for writing this. I read this post twice. I think, for your family you have made the right decision and I know it wasn't an easy one to come by. Since you have five other kids, you have to take the whole family unit into account. For us, I think the therapies have been helpful. I have seen improvements that have been related to the therapies Olivia has received. Olivia also doesn't have any siblings, so in that sense the therapies have been helpful for me to teach me how to play with Olivia. There are so many things that I have learned especially from OT and ST. I think each family has to make a choice based on what is right for their family. The key word there is choice and most people don't feel like they have that because of that fine line between hope and fear as you mentioned. Good post. Very good post. :)

Anonymous said...

I wonder about people who criticize you for not having early intervention (not their business). And I totally get the idea of just being- I say that all of the time to my special ed sis-in-law who wants me to use flashcards all of the time (but she did that with her own Typical child so it's not a spec.ed thing- just a lets get the most out of every educational experience thing)! I agree with the life is the best teacher philosophy as well and richness in our day to day lives is more important than focused therapies.
That being said- I think that our EI was NOT at all de-humanizing for us and is not in general as an approach. Our experience, of course having only the one child and not basing my interactions on comparison, we gained so much that in fact I would recommend EI the way I got it to ALL children, just as I would recommend IEP's for all children. We had a single appointment with all other services embedded in pre-school - very convenient. Our worker was wise and helpful and warm beyond words- so much I wanted to keep seeing her after K. turned 3.She was someone I could talk about all of those fears with and she always made me feel better with her knowledge and confidence in K.
Based on your description alone I would say that your EI is terrible and your state needs some help figuring out how to do EI properly. It saddens me that you had such a traumatic experience around your child, not just the EI part- all of it. Thanks for writing this Lisa, inspiring a post!

Terri said...

There are so many fine lines, and so many ideas about what our kids with Down syndrome simply must do. Support exists for your child and for your family--not the other way around and I think staying in the drivers' seat (and staying awake at the wheel) is the important thing. We have participated in things we never thought we would and have opted out of things we were "supposed to" embrace... The right way meets the needs of your child and family.

I congratulate you for figuring this out when Finnian is so young--it saves a lot of time and energy not being "for" or "against" so much and looking for the experiences (and sometimes skills) that feed you and him. And keep writing about it please, empowerment is energizing!

Sharon said...

I agree that making the decision that is right for you and your family and not just doing what someone else says you should do is most important. It's interesting because I was never told that the goal of therapy was to get Brennan to do things faster or on a more typical schedule. I was always told that the goal was to get them there the right way (such as correct back, foot and ankle posture in PT, jaw strength and tongue retracted in ST, etc.) so I imagine this put me in a different frame of mind from the beginning. I have found the therapies to be helpful (for Brennan and for me), but also make adjustments as I see fit. For a couple of months at the end of last spring Brennan had 5-6 therapies a week. I dropped it to two a week for the summer because I wanted our family to just be able to spend time together. I don't regret that decision for a minute and believe it was THE best decision for our family.

Therapy has been helpful to us, but I agree that it is not the right thing for every child or every family. And I agree that each family should feel that it is their decision to make and not be pressured into it by social workers, doctors, etc.

Brandie said...

I've always had a love/hate relationship with EI. You are right about the attitude that our children are "broken". If I had it to do over, I would have far fewer therapies for Goldie. In hindsight, I think ST was a waste of time. OT wasn't much better.

Now, that Goldie is 3 we have opted out of preschool and the services provided there. Goldie gets private speech and OT near our house. The difference is AMAZING. It has made life better for Goldie and us. The therapists are better trained and able to work on what I tell them she needs help with.

At home, (we homeschool) I have Goldie doing the same activities her sisters did at her age. Finn can get everything needs right at home with his family.

JaybirdNWA said...

Whether or not early intervention is necessary and is therapuetic depends on ones definition of intervention. There are many types of intervention that can be utilized. They rannge from formal intervention from therapy services to family intervention from brothers, sisters, moms and dads. While we chose not to go the route of formal intervention, we did intervene with some therapies such as feeding, playing on tummy therapies. I truly believe that my son would not be where he is today without some of these interventions.

Washi said...

I just found this post after doing a search for "am I the only one who thinks Early Intervention is a waste of time?". My son is 2 1/2 and autistic, my experience with early intervention has been somewhat similar. I really don't need someone to come to my house to tell me things I already know and to do things I've already been doing all along (it's like having someone come to your house to remind you to eat and sleep as if you don't already) and when huge gains aren't made to somehow have that be attributed to me not spending enough time blowing bubbles or interacting with him by taking away all of his toys. The part about the children being broken was very well writ. I think early intervention can be great for people who truly have no idea how to cope, but I'm not one of those people and resent being treated like one. I'm also not thrilled with the prospect of preschool, which they never fail to bring up every time they come by.

Alice said...

Amen! We have a son who turned 2 this August and have constantly battled with our aversion to EI. On the one hand, every doctor pushes it like it's an absolute must, when really, it is an optional activity (so far!). We chose to meet with an ST and OT privately, once a month from 6 months - 18 months but since then have stopped altogether.
When we meet with other parents at our DS association functions, it makes most of the other parent's jaws drop when they hear we don't do therapy. 'None? None at all??' they'll say, and look at us like we have a third eye or something. They usually follow up the comment with reccomendations on who we can meet with that we would like for therapy and different agency contacts and on and on. I know their hearts are in the right place, but it's just not for us. We want our son to be a kid, not a science experiment. There may be families out there who have found something helpful out of it, but honestly, I believe he'll progress on his own track, with or without a therapist. Our son is walking 6 months ahead of his peers that have had extensive therapy, so I don't feel guilty anymore. I'm done!!
I think we're too quick to feel guilty and succumb to peer pressure due to the 'unknown' world of DS. As with any child, as a parent, you know what's best for your child, don't ignore your maternal instincts!

Anonymous said...

THANK YOU!!! Stumbled upon your blog while googling "Ds therapies for babies at home"... it was manna from heaven. This post is EXACTLY what I needed to hear tonight!!! Thank you. Thank you. Thank you :)

Anonymous said...

I am so glad that I found this post. Medical doctors and Early Intervention Affiliates will have a parent thinking they are crazy and/or negligent for refusing their services. However, I believe that in many cases, Early intervention is a waste of time. Parents should not feel guilty for choosing to refuse their services. I have a child (almost 3) who was born with a rare genetic disorders and he has "severe developmental delays." Initially, I refused the services of Early intervention because my son was spending to much time being treated like a science experiment as it was..going back and forth to Childrens Hospital for extensive testing. Many of the visits were unnecessary and caused him stress. He is an otherwise very hapy child. Eventually, I allowed EI into my home. I did not find there services to make any difference. I also found that they acted as if he was a child that needed to be fixed. I also found that they acted as if the lack of progress was due to our lack of participation in the process. I am more concerned about my child being able to build happy childhood memories than I am about manipulating him to be more normal. I don't want him to grow up with memories of constant interventions, therapies, and appointments. The reality is that if a child is raised in a loving environment that they will develop in a happy, healthy manner regardless of their different timeline.

Mama said...

This is a breath of fresh air..I was made to feel like my baby needs all of this therapy,when really everything he's doing is because we just let him be a baby.I have 4 kids and honestly I don't know what milestone was hit when.I just know they all did their thing when they did it.I hate feeling like I have to think every action out,why does he need to be stimmed or input on his face deliberately?cant the million times I kiss his face be it?Cant I just do it organically?It feels so forced when the EI is here,jotting down notes and stupid questions,she never sees how he really is..It's like ok she's here perform or get a note jotted down.Just found your blog today,the laundry can wait lol

thara ravishanker said...

I never had access to EI- I live in England.

My NHS therapists told me Abby needed intensive therapy(read 24/7) because her brain damage was that severe.

Like one poster, I got the impression Abby's therapists thought I could not cope(I can) either.

That being said, I did enroll Abby in music therapy. Abby has always loved music so I thought she would love MT.