Tag: Sensory needs

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.

light-bulb-icon_23-2147506146
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?

tumblr_mlcy38SMv41sn4v6bo1_500
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.

Navigating food issues

I may have mentioned this a time or two, but the boys really struggle with food.  For Wonder Boy, it’s a combination of being 5 and preferring to eat nothing but chicken nuggets and string cheese (he does eat a few more things) every meal for the end of time and also having sensory needs which are not met by many standard “kid” foods.  For example, anything soft or creamy is totally out of the question, with the possible exception of ice cream.  He won’t eat regular yogurt (soft, creamy, and full of stuff that he doesn’t trust), mac & cheese (though he will eat pasta with parmesan cheese), hot dogs, the list goes on.

For Speedy, it’s a combination of medication which prevents him from being super hungry and a major anxiety about…everything.  That anxiety at mealtime is typically connected to wanting to please his parents, aide, and teacher and being terrified that he’ll fail.  No child of 7 should have to feel that level of anxiety, but it is with him 100% of the time.  Because of his meds, he really can’t eat a lot at any one time, and because he may leave food on his plate, in his mind this is letting us down.  This all manifests as stomach cramps, and the cycle just continues to get worse.

As a result of these things, we’ve come up with some alternatives.  For Wonder Boy, we focus on just getting protein in him and the key vitamins and nutrients.  As long as he’s had a peanut butter sandwich (no jelly, please) or chicken nuggets we’re happy with the protein, and in a pinch he can have a meal replacement shake.  For Speedy, we feed him many tiny meals throughout the day, and his aide at school has been an integral part of making this work.  At dinner, we allow him to stay focused on something like music or an educational program on television, and then he’s more likely to actually eat without anxiety.

Recently, we signed them up for a program at one of the universities which allows Occupational Therapy students to work directly with kids.  They play and provide the kids all sorts of input, allow them to crash, swing, roll, and spin.  Then all of the kids go into the kitchen, where they work with the students on having fun with food.  The students provide the kids with an example of something fun they’ll make with food, usually a design or an animal.  Then they give the kids the food items needed and see if they can recreate the design.

Along the way, they ask the kids if they will smell the food, then “kiss” the food, then move up to touching the food against their teeth.  Wonder Boy got as far as the kiss yesterday with one of his least favorite foods, celery.  This was huge for him!  Last week they made animals with apple slices, raisins, string cheese, and sugar snap peas.  He now will eat sugar snaps as long as I make him a “mantis” out of his food.

IMG_6117
Admittedly, this mantis is missing four legs…but you get the idea.

I know that eventually mealtime should get easier.  Having raised up two other boys, I’ve watched them move through various food phases and ultimately become people who really enjoy a wide variety of items.  In the meantime, we navigate each food encounter with the precision of a highly-skilled CIA operative.  At times sneaking in the stuff they need, and negotiating as though our lives depended on it.