Choosing to dramatically cut down on therapy

Today is Day 17 of 31 for 21.

 
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Last week I did something really courageous, something I’m so proud of myself for.

I told Yirmiyahu’s new physical therapist that i won’t be coming more often than every six weeks.

Courage comes in all kinds of ways and while this might not seem like a very big deal, it wasn’t easy for me.  I’ve been questioning the value of traditional early intervention therapies for about a year now.  This has been a hard thing to do, since everyone ‘knows’ how good therapies are.  I’ve had to let go of wanting validation from outside sources for my choices and look to myself to act in integrity with what I really believe to be in Yirmiyahu’s best interest, despite the criticisms and hurtful assumptions that may be made about my commitment to him.   You have to pat your own back and sometimes that’s hard when you’re doing something different from everyone else and are worried you’re making a mistake that your child will pay for.

When I began feeling unsure about traditional therapies, it was just my feeling and I didn’t give much credence to that since I thought I must be wrong since therapy is good and therapists are all going to know more and do better than I could.  Then I read an incredibly powerful paradigm shifting book that deserves its own post, Disability is Natural that more than validated my feeling; it got me thinking deeply about disability and how our culture views it, and how do I want to participate in that culture.  This wasn’t something theoretical or exclusive to the philosophical realm.  I found that after therapy I always had an inadequate and negative feeling about myself as a mother and looked at Yirmiyahu’s development with anxiety,  They seemed to be looking for delays and if he wasn’t delayed, rather than say something positive about how well he was doing, the message was instead about how hard we should work so he wouldn’t become delayed.

As I read about the experience of adults with disabilities who spent years in therapy and the negative self-image that developed as a result of absorbing the unspoken message that there was something inherently wrong with them, I thought how difficult these messages are to combat.  The negative self-image it leaves a person with may be more disabling than the disability itself.  A person with a disability is living in a world where he’s surrounded by the meta message that he’s not enough as he is.  You’re only okay if you’re ‘normal’ (whatever normal means).  We read about how important it is to convey to our kids that we love them unconditionally, but when it comes to kids with disabilities all of a sudden acceptance goes out the window and fixing them takes priority.  The fine line between encouraging Yirmiyahu and accepting him as he is now can be a challenge to balance but I hope I’m getting the hang of it.

 I decided that I wanted to quit therapy but I had some fear around that.  Fear of being seen as a neglectful mother (I had way more than my share of that when Yirmiyahu was in the pediatric intensive care unit), fear of doing something different than everyone else, fear of burning my bridges.

I tried to quit but – surprise, surprise! – my ambivalence came through and I ended up making another appointment instead, after being told how important therapy is for him, with the implication that what kind of mother can’t find time in her schedule for something as critical to her child as this.

Last week I finally summoned my inner clarity and firmly told the therapist that if we couldn’t come every six weeks for a check-in visit, then we wouldn’t be coming at all.  I had asked about this option before and been told it was impossible.  But this time when she saw that I really wasn’t going to come again, she made an appointment for six more weeks.  She said she’ll see about when to schedule the next appointment after that.  I told her I’m not interested in discussing it at every visit; six weeks is what we want right now.  In the past I’ve allowed myself to get sucked into discussions that have no productive purpose since their goal isn’t to listen to me and understand my concerns but to get me to buy into their way of doing things without questioning them.  Yirmiyahu has an inner schedule like every child and with support he’s going to learn to do what is important for him to learn when he’s ready.  We can support him but we can’t make things happen.  He’s the one who will make it happen, not the professionals.  That trust in your child is where I see things very differently from the therapists and while it sounds like a small difference, it affects every aspect of how we see him and how we approach interventions.

When Yirmiyahu was younger, I advocated very hard for more services, which were then allotted to him.  At least verbally.  In reality that never happened.  I didn’t push it because by then I wasn’t sure that’s really what I wanted any more.  The reason I chose to continue with periodic therapy rather than quit altogether is that I’m not trying to do everything on my own; I value the experience of therapists and know that there are things I can learn from them.   I also wanted to leave the channels open in case we want services in the future.

Switching to a six week schedule gives me such a sense of freedom.  The summer break from therapy was wonderful – I was able to enjoy Yirmiyahu without constantly pulled back to an unproductive way of thinking about him and about myself.  It was also when he learned to crawl and to stand, all without official therapeutic interventions but with lots of support from us.  (The therapist was very surprised and impressed with how good his form was.)  During the first year, my feeling was, I’ll do whatever Yirmiyahu needs.  Imbalance is normal for many of us in the first year after the diagnosis.  But imbalance isn’t an ideal and you can’t live in that state forever. You have to find balance for the sake of every member of your family, and that means finding ways to live a normal life.  Weekly therapy stopped feeling like part of the solution and started feeling like part of our imbalance.

Not going to official therapy doesn’t mean that we won’t be doing anything to encourage Yirmiyahu’s development.  Of course we will.  It’s more an issue of looking for ways to provide him with a normal life while finding ways to integrate support naturally.  I have the books Gross Motor Skills for Children with Down Syndrome, Fine Motor Skills for Children with Down Syndrome (each of these books was written by therapists with extensive experience working with kids with T21 and are professional and detailed guides), Yoga for the Special Needs Child and a couple of books by Glenn Doman espousing a neurodevelopmental position- in addition to online reading these provide a pretty solid foundation of technical guidelines and alternative ideas to support him.

He’s a lucky baby to have siblings who play with him all the time – I think our kids really are the best therapists!  They involve him in their games, do fingerplays and sing songs with him, swing him on swings, play in the sand and go down slides at the park, and give him rides on his push car.  Today ds7 ran to get him from me so he could play with him in the ball pit at the park.  They put mattresses on the floor and put toys just out of his reach to encourage him to crawl.  They show him how to play with toys and give him lots of positive feedback.  Love is a positive motivator, and there’s no doubt that Yirmiyahu extends himself in order to interact with them more than he would for a therapist that he doesn’t have much of a relationship with.

And to be clear – I’m not against therapy; I’m open to increasing therapy visits in the future if I see that’s what will be most supportive of Yirmiyahu’s needs at that time.  But now it’s not and sometimes having the courage to support your child looks like this.

Avivah

10 thoughts on “Choosing to dramatically cut down on therapy

  1. Avivah, I love the way you think through things. Isn’t part of this an extension of home-schooling? I have a hschooling friend whose sister is a early childhood reading specialist and aghast that my friend thinks she can teach her children to read without all the classes and training. Most people simply don’t take the time to explore and understand a topic (let alone the child) and so the “expert” is venerated. While there are skills that therapists and specialists acquire, especially after years of experience, a huge amount of what they do is simply giving focusesd time and attention to the child with whom they are working. You are so right that Yirmiyahu’s motivation to have fun with his siblings will internally push him way more than a scheduled visit can.

  2. Avivah, you know you have my support here! It sounds like you are all doing such good things with Yirmiyahu and he is so loved, he is thriving! I have to agree with you about the siblings being the best therapists and they are on the job, 24/7. JoJo, (Yosef) has learned so much from the everyday interactions with them and just trying to keep up with them. He even learned to shout “my turn” from playing with them. .Iam sad to hear that your experience with therapy has left you feeling like that, not validating you as a mother who knows her child best and whats best for her child is hurtful. You are so right, that our kids need to be accepted and loved – even celebrated, without trying to change them. It is never easy to take a different path, but G-D willing you will be rewarded with much nachat.

  3. You are such a breath of fresh air. I love the way you think things through for your children’s benefit. Never doubt your instincts.
    Much nachas from all of them knh.

  4. When my youngest dd was in the hospital, she would simply not cooperate with the physical therapists, or even acknowledge their presence. She would, however, do anything for her siblings. So the physical therapist and I created a plan. She told me what we needed to work on; I would tell the other kids what to encourage, and then I would videotape it with my phone. At the next appointment, I would show the therapist the tape, and she would provide feedback and additional excercises. It might be worthwhile taping some of your son’s adventures. First, for the therapist seeing is believing, and second, flipping the appointment like we did might provide you with useful information while keeping your son safe from the meta-messages.

  5. This reminds me of something a coworker told me. His wife is a school administrator and one of the ways they categorize children is whether or not they are “school dependent” (a more positive and accurate term than “at risk” which should be a much smaller category). It’s kids who don’t get any supplemental education or encouragement outside of the school environment. Reading, enriching activities, things like that. And a lot of programs were created with that child in mind.

    This sounds like the same system. There are probably children with parents who can’t or won’t engage to encourage development. And for them weekly therapy will probably make a huge difference, even if the paradigm is negative. Yirmiyahu is clearly not dependent on the system so it seems very reasonable that you should opt out and get only period checks with the therapist for issues you may have missed. He’s lucky to have you and so many loving siblings :)

    1. Anne, this is a great point. it reminds me of something the person who posted above you told me recently – to realize when I’m dealing with the bureaucracy that they deal with a lot of people in the population who aren’t well-educated and it affects their perception of parents’ abilities.

  6. As I’ve mentioned in the past, we’ve been very fortunate with our EI coordinator. She has read and supports the concepts found in “Disability is Natural”.

    We see her about 1x per month. She plays with Aryeh, looks at what we are doing with him, makes suggestions, and encourages us with what we are doing and how he is developing.

    I see her as a teacher and resource for _me_, not for Aryeh. As I see it, she is an expert in the field, with lots of knowledge about PT, educational methods, and lots of experience with a population of people with DS. She has seen children who’ve done well, and children who’ve done poorly, and children who’ve surprised their parents with their abilities. She has on tap lots of knowledge which helps me from re-inventing the wheel or missing stuff.

    _I_ on the other hand am the expert in my son. I am with him every day, I know the difference between things he can’t do and things he is refusing to do; I can work with him when he is awake, energetic, and playful; when he is getting fussed by something that is too hard, I can take a break and kiss him until he is giggling again.

    So I encourage you to keep taking Yirmiyahu to therapy…but once every 4-8 weeks sounds just about right to me :)

    You are absolutely correct: every child will develop on their own schedule. I think that your statement about encouraging their development can be restated: a child’s schedule depends upon context. Nutrition, stimulation, role models, encouragement, etc. are all part of the environment in which a child makes their own schedule. You create the environment which molds Yirmiyahu’s schedule.

    Another thing: some of the stuff that you’ve been reading is a crock of ****, unsupported by evidence based medicine. The therapists that you see will be up front about telling you this. What they won’t be willing to say is just how little of their standard practice is also unsupported by evidence. We know that simply not throwing our kids away works wonders. But we really don’t know much about which interventions and therapies actually make much difference long term.

    1. Jon, you’re very fortunate to have such a clued in coordinator. I’m fortunate that I got to read the book! Big thank you once again for that. Our physical therapist told me she has a lot of experience with Down syndrome. I asked her how many kids with T21 she’s worked with in her six years of practice, and she said ‘almost ten’. To me that isn’t lots of experience.

      I like how you phrased it: a child’s schedule depends upon context. That’s exactly right and you said it better and more clearly than I did.

      I’d love it if you can flesh out your thoughts to me privately regarding reading material. I take a lot of what I read with a grain of salt; it gives something to think about but I don’t take what I read as if they’re guarantees that are written in stone. I haven’t yet seen the common thread between adults with T21 who have reached certain levels of accomplishment (not that I have much experience with this and my reading isn’t extensive enough to get enough info) except that they had loving families that supported them. Not therapies, nutrition, etc.

      It seems to me we keep going on the early intervention path because we don’t know what’s going to work and we’re hoping this is the path that makes the difference.

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