Thursday, July 7, 2011

Sorry Folks. It's Hard and It Takes Time.

Occupational Therapy is one of the least explained and most heavily mined areas of autism intervention. I don't mean the kind of mining that involves digging for precious metals. I mean the kind that involves stepping carefully to avoid well-concealed explosive devices. 

When it comes to occupational therapy for sensory dysfunction, the right provider will motivate a child to participate as well as being a philosophical match for the adults. Both aspects affect treatment. If you are looking for a provider, issues to explore include: 
• Does the therapist have experience with sensory dysfunction? 
• Do they connect as your child's "type" (A big and silly personality? Or a reserved and composed manner?)
• Are they aligned with your family's intervention style?

Ask therapists if you can visit their facility. You are looking for clinic space that is inviting and  well-stocked, with attention paid to safety. It is best if they have some equipment that you don't have at home. That will add a special dimension to your child's sessions. 

But all of that said, setting parental expectations appropriately is where many OTs fall down on the job. I suppose they look into the tired and hopeful eyes of parents and skew toward optimism. So let me offer some straight talk: Expecting any occupational therapist to produce dramatic results in an hour (or even two) a week with a sensory-seeking child on the spectrum is destined to disappoint. But you can develop a therapeutic relationship that leads to solid results over time. 

Using occupational therapy to address sensory dysfunction is a fairly new area and it lends itself to all kinds of voodoo. Let's face it, the whole notion of delivering sensations that our children are already seeking (and in disproportionate amounts) as therapy involves a certain mind shift. There is little in the way of strong science to back specific techniques, and it has attracted little mainstream medical attention. And there are a wide variety of dubious approaches that can't possibly deliver what they promise when logic and the light of day are thrown on them. But that doesn't stop some clinicians from suggesting them to parents who are vulnerable and frustrated by a lack of visible progress. I have been pointed toward more garbage in the name of OT than in any other category since my son's diagnosis nearly a decade ago. 

Here's the cold reality: Therapy for sensory dysfunction exists whereever you can find it. It isn't just in clinics, and therapist certification matters less than consistency and patience.  

OTs who address sensory dysfunction are best appreciated for what they can teach Moms and Dads as opposed to what they can accomplish directly in a limited amount of time. Because when a child has big-time sensory issues (and in the absence of factors like pain or a concurrent condition), amelioration lies in the repeated, consistent, and regular delivery of sensory input during the business of real life. There is no Big Fix. It is a process that emerges out of trial and error about what works, as well as an exploration of timing and delivery methods. Further work is involved building simple, transparent integration so input can happen across environments, at school and at home. 

There are good OTs and they can be helpful. But assurances that come with therapy have to be consumed with a grain of salt. A therapist can't do much to address a truly pervasive issue within an hour a week, even though your insurance company or school district may say this is all that's required. OT work is going to be aided by realistic expectations. But my experience has been that providers rarely communicate the attitude to parents that their role is advisory first and direct second. 

I have two other bits of practical advice when it comes to sensory integration therapy, and the first is swim, swim, swim. Warm water swimming is especially terrific, since it neutralizes the sometimes big punch of a cool water temperature. (After all, we humans regularly run around at 98.6 degrees.) But at this time of year, there are good pool experiences available all over. Swimming is unmatched for the inroads it makes not only sensory but gross motor, motor planning, and engagement areas. In other words, it is the whole package. I have never found another single activity that is as powerful. And get in the water with your child! If you enjoy it too, it will take off. 

Second, see if you can find an opportunity to try a big trampoline with safety net sides. Mini trampolines are not the same. Big tramps are like bouncing in a bowl of elasticated marshmallow fluff as opposed to bobbing on top of a hard red rubber ball. We made true gains in my son's ability to jump using two feet together and in regulation using a big tramp, and we had crazy fun doing it. 

I began to truly appreciate occupational therapy when I looked upon it as a chance to explore and evaluate how we were doing in our real world work. In retrospect, I resent the time wasted on fantasies masquerading as goals and urging toward fringe approaches. If a therapist starts pushing you toward expensive alternative therapy in addition to what they offer, and especially if they shut down when you explain that the approach is not something you want to pursue, it's time to look for a therapist who is a better fit.

When a child is deeply compelled by a neural need to seek sensation, true traction comes from lots of consistent daily input and a long term view. You keep at it. And you surround yourself with a team that understands this a process that will continue and change over time. There is no shortage of people who can promise quick fixes, miracle dietary supplements, or other approaches best suited to draining your wallet. Don't let those things derail you from helping your child find coping techniques. It is far less sexy but it is the real work of sensory integration therapy. 

2 comments:

  1. This was a great read Susan. I can probably enjoy our OT sessions more now that I've decided to not have unrealistic expectations.

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