Month: May 2018

What are your qualifications?

It’s a question that I get asked.  A LOT.
In my job I have the good fortune to do a lot of outreach with teachers, therapists, counselors (of the camp variety), program directors (also of the camp variety), parents, and many more people.

I talk with them about meeting a variety of sensory needs.

We strategize.

We spend a long time talking through very specific needs and finding solutions.

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Image is of a drawing of an incandescent light bulb, with straight lines coming out from the bulb as if to indicate a light has been turned on.

I love this aspect of what I do- both parts of my job are incredible, however the library outreach that I do often involves solutions that look rather like this:

[Images as follows- top left: a small room with white walls, colorful beanbags on the floor.  top right: a small space with a purple light and a beanbag on the floor.  bottom left: a clear plastic box containing toys, with the words “break box”.  bottom middle: a hand holding a pair of headphones with a cartoon-like panda face on the side.  bottom right: a young boy with short blonde hair leaning into a blue beanbag.  He is wearing a blue shirt with stripes and his eyes are closed.]

 

I typically share with parents that I have sensory needs myself, in addition to raising kids with a wide variety of needs.  This often leads to me sharing that I am on the spectrum along with my kids.  And I will discuss what some of my sensory needs are.

Occasionally I will be talking with someone (usually a teacher or Occupational Therapist) who asks the question: “Are you an OT? What are your qualifications?”

It’s an understandable question.  One the one hand, you wouldn’t ask your mechanic to do your dental work- you want someone qualified for that task.  On the other hand, I think that we live in a society utterly fixated on this question.  I suspect this is the result of generations of people who have been taught that the only road to success is a college degree.  Don’t get me wrong- that is one road to success, depending upon your personal definition of success.  I do think, however, that we have a long way to come in terms of recognizing that in order for someone to be qualified, they may have arrived there in a less-than-typical way.

It also brings up a very important point: Who better to ask than someone who lives it?

All too often in the world of disability-based conversation, much of the “talk” is happening without including those who live it.

To what end?

I think the mindset all along has been that the Experts are the ones who are qualified.  They’ve studied us from a clinical perspective and can certainly provide some of the really necessary information.  But unless they live with a particular thing themselves, can they truly know and understand what it feels like?  If you don’t wake up daily with anxiety, can you truly know how deep the impact can be?

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Image shows a seven-sided shape of multiple colors.  There are the silhouettes of six people in the middle, and the words “Nothing about us without us” in black print.

You may know this one: “Nothing about us without us”.  It’s an old phrase, and basically it means that conversations about (and decisions affecting) a specific group of people MUST ALWAYS INCLUDE that group and requires complete inclusion and participation in said conversation or decision.

We have a long way to go.

Fortunately for me today, I was speaking with a small group of people, one of whom knows me.  She very gracefully interjected when I stumbled over the question of whether I’m an OT, and she said “she is qualified by a lifetime of personal experience”.  And she’s right.  I’ve been living as me for a glorious (and often really awkward) 44 years.  I’m an expert on my sensory needs, and have become an expert on my kids’ sensory needs.  And after a lifetime of trial and error with a fairly small sample size, we’ve figured out quite a few things. We’ve learned things worth sharing. And sometimes it’s even the same stuff recommended by the experts.

I don’t have a degree.  I don’t know if I’ll ever finish, and that’s just fine by me.  I am doing the best I can with the information that I have, and I don’t let myself sell me short just because I’m lacking a piece of paper stating that I’ve Learned All The Things.

Where to start…

One of the things that my husband and I get asked a lot is “Where did you start”, in reference to our youngest son’s diagnosis.

Now, I have to say that over the years I have figured out that some of our story is not typical, in that things kind of just…happened.

We talked with Wonder Boy’s pediatrician, she referred us to Early Intervention.  As he aged out of EI services at age 3, we were fortunate to land a spot at the preschool we wanted him to attend.  And when he was done there, he transitioned into an integrated classroom in the school district.  I’m telling you, with him, things just happened in the ways we wanted.

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Things were different for Speedy, and I find myself perpetually in a state of “where do we start” where he is concerned.  Sure, he received a diagnosis- three, in fact. And it’s  become clear to me that perhaps we have been seeking help in ever-so-slightly the wrong direction.

I believe, quite firmly, that several things which have happened in Speedy’s life have played a big part in the trauma-like responses that we get from him:
Quick, highly emotional responses
Reactions which do not match the situation
Cries easily/quickly
Fight or flight mode always set to fight
Always in a state of either protecting himself or hiding himself
Heightened fear response

Getting help for this is not so easy, and therefore we definitely are feeling like many families do: WHERE DO WE START???

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We want him to feel good about himself, about his family, about his place in this world.  So, after talking with a great many people about it, we will try therapy for him. And possibly for me as well. Because every single day I say to myself “I don’t know how to be who he needs me to be”, and that makes me both scared and sad.

Where to start?  Trust your instincts.  Do a LOT of research.  Advocate.  And if you feel that there are unanswered questions, continue moving through the people who may have the ability to provide the answers.  We haven’t yet gotten there with Speedy, but I have no doubt we will.