refusing to eat

Published January 30, 2009 by Nancy

The standard advice you get for a fussy eater toddler is “Just put a variety of foods on his plate. When he gets hungry enough, he’ll eat.”

Great advice — for most kids. But for toddlers with sensory processing issues, it’s not going to work.

We tried it. At two years of age, he was down to eating just five foods. Heck, you’ll try anything. And it sounds so reasonable.

But after a month of more screaming and distress than usual (which was a lot!), I put him on the scales.

He was down two pounds.

So we pulled out the five foods and let him at it as much as he wanted, all day long, till that weight went back on again. And we didn’t try tampering with his diet again till he was more than three years old.

Kids with sensory issues will go down with the ship. If they have to starve to avoid painful and distressing food sensations, then that’s what they’ll do. The pain of hunger is just one more type of pain, something they experience near continuously every day. Especially at the toddler age, they can’t distinguish between one type of pain and another. So you have to swim with the current, not against it.

Here are some tips for feeding toddlers with sensory issues:

1. Give them lots of food.

2. Figure out their preference patterns (e.g., smooth-textured foods, cold foods), and keep introducing more options in that pattern. Aim for foods with the highest nutritional content (e.g., dairy, protein, fruit, vegetable), and avoid introducing new low-nutrient foods (e.g., pasta, breads, starches).

3. Avoid pestering them about food. It’s distressing enough for them. Work in lots of rewards (e.g., extra desserts). We found that mini teddy-bear cookies were great rewards for taking a bite of something (e.g., eat one pea, get one cookie, eat another pea, get another cookie). As long as you keep it light and playful, it becomes something pleasant.

4. Experiment and push your boundaries of what you consider kid food. There is nothing wrong with eating tomato cocktail with a spoon, making gelatin out of pureed fruit, or eating pumpkin pie for breakfast. These are all fantastic food choices.

5. Provide stimulation. Turn on the music during mealtimes. Some kids settle down to eat if they’re listening to Mozart or sound effects music, but others prefer 1950s rock’n roll to keep their senses awake. Others like to have a dot-to-dot puzzle to work on while eating.

6. Keep in mind that in the toddler years, your focus is on health (his) and survival (his and yours). With all the sensory issues (and probably screaming) you are dealing with during the day, you need to keep meals relaxing and sustaining. It is too easy for him to learn to fear foods.

if I could do one thing

Published January 27, 2009 by Nancy

Last week, I read Naomi Klein’s new book The Shock Doctrine. This is a book about money in case you haven’t read it. Not a fun read, but it defines disaster capitalism, which is pure-gold insight.

One chapter keeps replaying in my mind. It describes how some victims of Katrina went to Thailand last year to visit some fishing communities destroyed by the tsunami. They were stunned to find that the communities had been entirely rebuilt — unlike New Orleans, which is still a mouldy heap.

The difference?

The Thai communities rebuilt themselves.

They didn’t trust the government to do it right. They heard rumours that the government wanted to open the beaches for the tourism industry. So they squatted on their land and started rebuilding. They had to assert themselves into the decision making and force their goals.

The moral of the story: Sometimes you have to do things yourself.

The failure of the rebuilding of New Orleans (and Bagdad) should not be a surprise. The grants went to private corporations. They didn’t go to the people themselves. The corporations didn’t even hire local people to do the contracts. They hired outsiders.

But who cares, right? As long as it all gets rebuilt.

Except that it didn’t get rebuilt.

The reason? Wrong goals, wrong vested interests.

People who live in ruined communities have one goal — to rebuild their homes. And they have a vested interest in their life in this community. Private companies have a different goal — to make a profit. They have a vested interest in their company’s stocks. Itinerant workers have a goal — to make a buck and then go home. They have a vested interest in their own lives.

Only the people of New Orleans really, really wanted their city to be rebuilt. But they weren’t part of the program.

Money doesn’t make things happen. It empowers people to reach their goals. Goals that point in the other direction are like a black hole. Money just seems to disappear.

So relate this idea to autism research.

Funding goes to universities and research centres to “find a cure.” The goal of the universities is to make a profit, raise their profile, and attract more students and faculty. For the researchers, it is to further their academic careers and research interests.

It is not to improve the lives of autistic others.

Sorry. It just isn’t.

Consider this. If improving the lives of autistic others meant these researchers had to change careers and research interests, how many would change? If research finally showed that the genetics route is a dead end, would all the autism genetics researchers suddenly become, say, pathologists or psychiatrists?

No. They would remain geneticists and move on to the next promising research area.

Because their goal is genetics, not autism.

There is a lesson in this for families. We rely so much on doctors, specialists, and researchers to come up with cures and fixes. Millions of dollars get spent. Nothing changes. Sure, sometimes there is a “new promising drug.”

But believe me, essentially nothing changes. There is a big black hole thing happening.What if, instead of FEMA, a group of New Orleans citizens had been in charge of all the rebuilding funds coming in after Katrina? What if this group had made all the decision about the money? How long would it have taken to get things cleaned up?

Days? Weeks, possibly?

It’s not rocket science, people.

Give me a grant of $10 million to find a cure for Asperger Syndrome. I am a parent. I have a goal and a vested interest. I would pick a team of six other intelligent and capable AS parents.

We would determine the research agenda and hire the researchers. We would monitor it and make all the critical decisions.

We wouldn’t care if something could be patented or not, or whether it was cutting edge. We wouldn’t have a great overarching scheme– we would be practical, immediate.

And then just give us two years.

I know at the end we would have something.

science and religion

Published January 27, 2009 by Nancy

This past spring, I sent The Sensory Team Handbook to publishers for consideration.

Dumb, yes. And I did receive an offer, which I turned down. Long story.

Anyway, back in March, my brain still umbilically attached to the printing press, I sent a manuscript (one of several) to a children’s book publisher owned by the American Psychological Association. The website blurb said it published books for children and youth on topics related to psychological health and growth.

Sounds good, I thought. Good fit.

But by late spring, I received a response of no.

The reason?

Because the APA does not believe in sensory processing disorder.

Does not believe.

I raise an eyebrow.

I’m all for freedom of religion, don’t get me wrong. People have all kinds of belief systems, and I think that’s great.

But <ahem> what’s religion doing in the American Psychological Association?

And an even bigger question — What is religion doing in science?

I don’t mean the pro/anti-creationism thing goes on in the US. I mean treating science like a package of facts glued together, that you can choose to believe in or not

Science is not a thing, it’s a way. It’s the scientific method, which is the great truth serum of the universe. It’s not perfect, but it’s the best serum we’ve cooked up in a few millenia.

So is it just me, or is what’s called “science” moving farther and farther away from the scientific method?

Who hasn’t dealt with doctors that “don’t believe” in something that you know you have? Doctors are not scientists. They lost their link with science when they left their bio undergrad. Now they just read publications and join organizations. Maybe go to some lectures.They read summaries of the research or just the conclusions attached to the summaries.

They don’t ponder, question, re-test, analyzie. They learn by rote.

That ain’t science.

Think about this the next time you get a square-peg-in-round-hole answer from a specialist. Question their answer, and then watch their reaction. Do they bristle with holy indignation? Recite chapter and verse of some medical doctrine? Give you a sermon about all the apostates out there?

If you don’t back down, do they show you to the door, like priests refusing absolution to unrepentent sinners?

My opinion — nobody working in or with science should hold beliefs about what they are doing.

Read, learn, listen, yes. But still think, test, inquire, probe.

My another-opinion — it’s not research if its purpose is to bolster an already-held belief. If it blames unexpected observations on flaws in the experiment design or outside factors.

It’s a bit Monty-Python-ish:

Mr. Praline: Now that’s what I call a dead parrot.

Owner: No, no…..No, ‘e’s stunned!

Mr. Praline: STUNNED?!?

Owner: Yeah! You stunned him, just as he was wakin’ up! …

Where do these scientifico-religious beliefs come from? In psychology, they come from the funding.

Funding is the temple of scientific belief.

Drug companies fund most psychology research. If there’s no drug treatment, then duh, nobody’s going to pay for the research.

Pharmaceutical companies get to write the bible of psychology because they pay for it. SPD is out, ADHD is in.

APA will publish books on ADHD. Not on SPD.

I studied religion at university. Rabbi Baasser told us that everything that’s interesting in religion is occurring in the fringes, among the apostates and heretics. Today’s heresies are tomorrow’s orthodoxy.

So bow to no graven images. Seek the truth, test it, re-test it, question it, analyze it. Most of all, temper your beliefs with humility, because what we know is never final. Be open to learning more.

That’s science.

I published the book anyway.

making a world of difference

Published January 25, 2009 by Nancy

Neurodiversity is a new buzzword in autism spectrum circles.

It’s part of a movement among autistic and Asperger’s adults to redefine their life. They want people to see them not as problems to be cured, but as human variants to be respected.

They’re not missing something — they have something else.

Refreshing.

After all, we’re talking about people here — some of them among the most brilliant minds on the planet.

Refreshing.

After all, we’re talking about people here — some of them among the most brilliant minds on the planet.

how to climb a tree

Published January 23, 2009 by Nancy

<img class=”alignleft size-full wp-image-259″ title=”Sensory processing disorder and climbing trees” src=”http://www.nancymucklow.com/talkingsense/wp-content/uploads/2009/01/climbtree.jpg” alt=”Sensory processing disorder and climbing trees” width=”135″ height=”164″ />On the other side of the city, on the army base, there is a big granite hillock of the Canadian Shield sticking out the ground. At the back is a long winding path down through the bush to the lake — to a forgotten beach called Deadman’s Bay. Kids like to scramble up the rockface and explore among the mossy paths, scraggly bushes, and crevices. It can take up an entire afternoon.

<strong>They call it The Mountain.</strong>

The Mountain happens to have a very fat old tree growing in a nook of a rockface. Someone had placed some wide boards on the first set of branches to make a simple treehouse.

“Climb me!” it seems to cry.

“Come on!” cry the other kids, who have already monkeyed up and are looking down.

<strong>Climb up. Yeah, sure. </strong>

If your kid has vestibular issues, then he is chained to planet Earth, physiologically and psychologically. He is bewildered by how easily the other kids managed the climb. He will probably be fighting an inner battle between fear and longing.

With any luck, longing will win.

My advice: As long as it’s not a difficult or dangerous climb, sit back (not too far) and just watch. Avoid the temptation to interfere or micro-manage. Kids are pretty good at guiding each other, and your kid wants to do this by himself if he can.

Be on hand to give a boost if he needs it. But otherwise, let him explore the directions the other kids call down to him. The satisfaction he will feel upon reaching that branch will be much deeper if he did it himself.

<strong>Climbing back down is another story.</strong>

This requires the kid to turn around and reach down backwards and blind with her feet. Expect some distress. You’re going to need to coach her down in a calm, matter-of-fact voice, along with the other kids. Your role is to help her save face, so tell her that everyone feels afraid the first time they climb down.

Be calm, inviting, encouraging. Give step-by-step directions and a guiding hand where you can reach. Then give a hug when she gets to the bottom.

<strong>But don’t stop there.</strong>

Come back in a couple of days to try again, this time with a “picnic” to eat in the tree. Pack some mouth tools in the picnic to help calm and relax him while he’s up there. Each time he climbs, he paves the nerve networks of his climbing skills till he can climb as well as his friends.

bricks and boards

Published January 21, 2009 by Nancy

The last post was for northern hemisphere people who are dealing with record snowfall.

This one is for southern hemisphere folks who are watching palm trees sway.

Bricks and boards make a simple backyard vestibular game for younger children.

Place the boards on top of the bricks to make a balance beam pathway that twists and turns. The child walks along the boards keeping balance, as on a balance beam. Falling is not a big deal, since it’s a drop of a mere 4 inches (10 cm).

Into grass.

Except that it’s not grass. It’s an ocean full of sharks!

That’s part of the game.

Unlike a regular balance beam, this brick-board combination is not rigid or fixed. The boards wobble and move, depending where the child shifts his/her gravity. The child gets strong vestibular information from this activity, and doing it again but faster helps reinforce the skills.

You can turn this balance beam into part of an obstacle course, running from the swing set, over to the yoga ball, then back to the swing set.

Another option is to get the child to set up the bricks and boards to form letters, such as each letter of his/her name, then walk along the beam. Lifting and placing the bricks is a good proprioceptive activity, since bricks are heavy. Offer garden gloves if your child doesn’t like the feel of the brick against his/her hands.

the sorting hat

Published January 21, 2009 by Nancy

If life on earth depends on biodiversity, maybe human life depends on <a href=”http://www.nancymucklow.com/2008/making-a-world-of-difference/” target=”_blank”>neurodiversity</a>.

Yet media and experts use a very different language for autism spectrum issues: <em>disability, disorder, problem, abnormality, flaw, error</em>.

Even <em>epidemic</em>. As if autism is somehow contagious.

This is not the language of neurodiversity. It’s the language of <em>ew</em>.

These ideas frame how society treats autistic people. Imagine facing that every day!

<strong>But the language reflects the reality of autism fundraising.
</strong>

Movements don’t get money for helping variants of the norm. They get money for solving big scary problems.

So if you want people and foundations to open their purses, then you’d better scare ‘em good.

Funding appeals for autism issues have a hint of the freak show in them. The worse, the better. The more fear, loathing, and pity you can stir up, the more you can keep your issue front and centre.

Nobody seems to consider that autistic people are watching.

<strong>How a society frames an issue of difference determines how people will be treated. </strong>

I don’t want to whitewash the issue of autism funding or romanticize away the challenges. But the conflict between <em>neurodiversity </em>and  <em>disorder/abnormality</em> raises two important problems:

<strong>On the one hand: </strong>

Raising heaps of money is good because families with autistic children are desperate for help. Without special interventions, the kids may not do well in life. Without assistance, the families may not survive.

So the bitter reality is that the freak show appeals are important for getting money.

<strong>On the other hand</strong>:

Funding gets allotted. To whom? To families, services, or specialized (and expensive) training programs?

Hardly.

It goes to medical researchers working on genetics and drug therapies.

In other words, it goes to <em>abnormality/disorder</em>. It doesn’t go to <em>neurodiversity.</em>

<strong>The lesson here is that you reap what you sow. </strong>

name syndrome name

Published January 20, 2009 by Nancy

I am fascinated by the concept of <a href=”http://en.wikipedia.org/wiki/Syndrome” target=”_blank”>syndromes</a>.

A syndrome is a collection of symptoms that have been bundled together to make it convenient to talk about them. Like Asperger Syndrome.

It’s not a <em>thing</em>, really.
<blockquote>You: Doctor, I have a sore knee and a crick in my neck.

Doctor: Ah, yes. that means you have Sore Knee Crick In The Neck Syndrome.</blockquote>
<em>Syndrome</em> is just parroting back what you said. It means: “We have a great name for your set of symptoms and the patterns behind them. We assume it’s a condition, but we don’t know the cause or physiology. But now you can Google it.”

It’s basically the medical equivalent of a Gaulic shrug.

kids and hotel pools

Published January 17, 2009 by Nancy

Just about everybody enjoys activities in the water. So here is my tip for any family on vacation that has an sensory issues kid:

Always stay in a hotel with a pool.

Pools are great. Pools can save an entire holiday.

And if you have an option for a hotel with a waterslide, take that one. Because a waterslide works faster than a pool and works at a deeper level.

When kids are growly, snarly, and unbearable after a long car ride, your goal is to get them onto that waterslide. You may have to cuddle and carry them into the water wailing and crying, you may have to comfort them. Everybody might even be looking at you. But at a certain point, the feel of the water and movement will awaken the kid enough to attempt the waterslide.

One splash, and you’ll already start seeing results.

Kids know when they need something. Your kid might spend the next hour on that waterslide, over and over again. That’s good. That’s filling a deep need for vestibular (gravity) and proprioceptive (muscle) movement. By the end, you kid will be in a reasonably good mood.

Getting the kid into the water in the first place can be a challenge, especially when a grouchy mood has taken over. And car rides do that. So have some mouth tools ready. For some kids, it’s crunchy food, for others, it’s chewy food, for others, it’s drinking from a straw. Use the food tools to take the edge off the grouchiness. Then be very calm and supportive of his/her feelings as you bring him/her into the water.

games for growing

Published January 4, 2009 by Nancy

My husband had a repertoire of silly games he played with the kids when they were younger.

The thing about sensory games is that kids like them. They ask for more. Soon, these become the favourite games. You don’t necessarily plan them to be sensory games — it just works out that way.

So here are the ones I can remember, from our house to yours.

1. Flap Fly. Hold the kid horizontal in the air, against your waist, using one arm or two. The kid has to “fly” by flapping “wings” and “tail.” The faster the flapping, the faster you run down the hall or around the room. Tip the kid up or down as you fly and provide appropriate jet sound effects.

2. Bee-oo. The kid stands facing you, holding both your thumbs. On the count of three, the kid jumps. You raise your hands to give him/her extra lift and make an electronic/laser “bee-oo” sound. Do it several times, each one getting higher lift. For the last one, the kid leaps up for a spider hug while you say ” boy-oy-oing.”

3. Bendable Boy. Sit on the edge of the bed with the kid on your lap, facing you. Cup the back of his/her head with your hands and bend forward, dipping the kid down toward the floor. Then pull back up. Sound effects are mandatory.

4. Pony Boy. Sit on a bed or sofa with the kid on your lap, facing you. Bounce your legs so that the kid bounces back and forth vigorously, while singing “Pony Boy.”

5. Slow-Mo Fighting. The kid stands on the edge of a bed (the mattress of which has seen better days). Pretend to be a fighter and throw slow-motion punches or pushes toward the kid’s upper body, never making contact. The kid responds like someone hit in slow motion in the movies — moving in response to the punch and falling down on the bed. Alter the way he/she falls by altering how you punch or push.