‘I Be Happy’

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When my autistic son was about 5 years old, it was suggested to us that we should teach him how to “recognize emotions.” Autistic people can’t read other people’s facial expressions, we were told, and this can lead to all sorts of social faux pas, improprieties and general troublesomeness.

I suppose it was a similar kind of reasoning that, a couple of years earlier, had prompted someone from a local autism team to cheerfully tell me that when the mother of an autistic child she knew had died, the child had missed her mother’s blue T-shirt, rather than the actual person, and that the absence of said blue T-shirt was the source of the various behavioral problems which arose on her part. My son had only just been diagnosed at that point: clearly she had not considered the impact of such a crushing and confusing remark.

Anyway, we bought a set of “emotions” cards and a certain amount of angst ensued, given that no one could agree on what some of the cards were supposed to represent. “Worried” looked very similar to “sad,” for example, and it was quite difficult to distinguish “shocked” from “surprised.” “Embarrassed” was particularly tricky. Fortunately, we adults had a key on which all the answers were listed, otherwise we might have been rather “puzzled.” My son, who didn’t have such an aid, proved to be rather good at the whole exercise and so the whole idea fizzled out.

I am aware that a number of people can struggle with emotion recognition (via facial expressions) and that some of those people might be autistic. The autistic speaker Paul Isaacs, for example, describes himself as “face blind” and says that he has had to find other ways to monitor his audience’s engagement than reading their facial expressions. Even so, what concerns me is not only that our interpretation of other people’s emotions is a matter of huge variation and subjectivity at the best of times (and that’s without factoring in ethnic, cultural differences, etc.) but that it’s only a short hop, skip and jump from thinking that someone who can’t read emotions or express emotions can’t actually feel emotions either.

“How does your child react when you cry?” is the question that many parents – especially mothers – are asked when their child is being assessed for autism. The “right” answer, presumably, is that s/he becomes upset, or even better, tries to comfort the weeping parent. The “wrong” one, a “marker” for autism, is that the child doesn’t react or simply walks away.

These are complex issues but also dangerous ones too, because the presumption is often made that if someone doesn’t react or respond in a way deemed to be correct, the underlying emotions are somehow deficient or even absent altogether. And the impact of all of those elements of life which affect us so deeply — love, death, disappointment, fear, hope, despair etc. — are coolly assumed to be irrelevant to a person who doesn’t respond physically or verbally in the required manner.

Our autism assistance dog, Wanda, returned recently after a seven-week absence while she had an operation on her leg. I asked my son a few times if he was glad she was back or if he was happy to see her etc., with very little obvious (to me) response on his part, until the second morning when, after stroking her on the tummy in a rather lovely way, he said, “I be happy.”

“What?” I asked not quite hearing, “You want the iPad?”

“I be happy” he said, smiling and moving in for a hug. “I be happy.” He’s 10 now, and that is the first time I have heard him express an emotion verbally.

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I don’t know for certain if my son was commenting on Wanda’s return or was simply expressing a joie de vivre on a sunny, summer morning, or something else entirely — it’s not important. But what does matter is that if you care about someone who also happens to be autistic, you don’t let anyone, either directly or by implication, even begin to suggest that your loved one does not have the same emotional needs as anyone else. That we all challenge the skewed logic which can dehumanize a child perhaps wanting to hold onto the texture and smell of an item of clothing of a deceased parent. That we remember that we all need and seek the same thing: to “be happy.”

This post originally appeared on The Talk About Autism Blog.

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A Life With Multiple Sclerosis Is Not a Death Sentence: 6 Myths About MS

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Multiple Sclerosis (MS) is a part of life for over 400,000 people in the United States, with an average of 200 new diagnoses each week. There is much about MS that we still don’t understand, such as the root cause of the disease, however, those that have been diagnosed with MS are finding new tools for coping and fighting the symptoms that MS can bring. There are many misconceptions about MS, and shedding light on these myths is one very big way to help bring awareness to MS and its effects.

1. Multiple Sclerosis is going to kill me.

A diagnosis of MS is not a diagnosis of a short life. Thankfully, research has shown that individuals with MS have, on average, a normal life span. There are instances where a severe case of MS may bring about complications or side effects that can impact one’s life span, however, the majority of MS sufferers will not have a shortened life span.

2. Multiple Sclerosis will make me paralyzed/disabled.

This is another myth. The majority of MS sufferers will not face paralysis. In fact, two thirds of individuals with MS will not suffer paralysis or a major disability. You may need to use a crutch, cane, or other walking aid, however, these aids are not due to paralysis or numbness, but can be due to fatigue or balance issues.

3. Only old people get MS.

While it’s scary to think about, the majority of new MS diagnoses are given to those between 20-50 years old. There are always exceptions to these figures, however, as those as young as 2 and as old as 75 may develop MS.

4. Those with MS can’t get pregnant.

This is one myth that is not only untrue, but holds a chance of relief for MS sufferers. Women with MS have the same fertility rates as non-MS sufferers. Additionally, many women report that during pregnancy, their MS symptoms completely disappeared. There is a 40-50 percent chance of relapse within the first six months after pregnancy.

5. I can’t have children because I can pass my MS down to them.

While genetic factors do play a role in developing MS, there is no evidence that a woman with MS will pass the disease down to her child. Statistics show that there is a 2 percent chance that a child will develop MS from an MS-diagnosed parent.

6. I won’t be able to stay active or work.

Thanks to the continuous efforts of modern medicine, there are many different treatment options for those with MS. Most of those diagnosed with MS will be able to continue their everyday activities. When it comes to exercise, many doctors believe that staying active can actually help the symptoms associated with MS. Not only does exercise help keep the body in shape, but it also helps fight off depression and anxiety, which many MS sufferers struggle with.

This post originally appeared on MS Living Symptom Free.

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I Laugh at My Kid (and You Can Too)

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I laugh at my son. Often. I like to think that most people laugh at their kids (you do, right?) so that makes me pretty normal.

Kids are hilarious. They say weird stuff, are embarrassingly easy to trick (*cough* Santa), and generally act the fool. In the animal kingdom, baby humans take the cake for comedy.

So we laugh at them — because they’re cute and because we can. At least I do.

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But when your child has a disability, sometimes people aren’t sure if they’re allowed to laugh along with you.  And that can get awkward.

Recently, I was swapping funny kid stories with a couple of friends. I told them about this weird thing that happens when Simeon crawls — and it didn’t go so well.

Here’s a recap:

Sim isn’t doing a four-point crawl but he has mastered the art of commando crawling (which is clearly the manlier of the two crawl options and obviously superior).  During these military-style crawling expeditions he scouts for things that don’t belong to him (Daddy’s PlayStation games), forages for treats (discarded Band-Aids) and pivots in circles like a break dancer.

And that’s where it gets a little funny. Because Sim can’t move his legs, he runs into a problem I like to call the “Friction Affliction.”

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Looks crazy, right? It isn’t hurting him, and it’s not dangerous (especially since we straighten him out quick), but Sim comes off looking like some kind of baby-contortionist. I have stage mom fantasies of putting him in the circus where — with his good looks and my sparkling personality, we would make millions.  

So that’s what I told my friends. The problem is, I don’t think they heard anything past “can’t move his legs.”  What was intended as a funny story fell on their ears like the groans of a Shakespearean tragedy–  no laughing matter. Observe this reenactment:

Here’s M.E:

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Here are my friends:

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It was awkward, you guys — for everyone involved.

Maybe the problem is that, unlike my friends, I’ve gotten comfortable with the fact that Simeon doesn’t move his legs. Maybe the problem is that we all need to lighten up when it comes to how we treat people who are different. Or maybe my story just wasn’t funny (gasp!), and I need to work on my comedic timing– but I kind of doubt that since I’m a riot and you know it. Whatever the reason, it felt really crappy (pardon my French).  Everyone was allowed to laugh at their kid except for me — because my kid is different.

You think your kids are funny — you chuckle when they sleep with their faces mashed up against the crib bars, you giggle when they say “truck” but it comes out as the very-baddest-word-in-the-world and you even laugh when they crawl like a weirdo.  Instead of being strange, laughing at my son actually makes me just like the mom of a typical child.

So I’m here to say that yes, I think my son is hilarious — even though he has a disability.  And if I laugh at him, that means you can, too. I mean it, you guys. It’s OK.

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 This post originally appeared on What Do You Do, Dear?

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Custom-Made Shoes Help Kids Trek Through Life’s Most Difficult Journeys

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A child walks into a hospital for his first day of chemotherapy. Another has already been in that hospital for weeks, receiving treatment after treatment for her rare illness. In a different wing, a teen is relearning how to walk after an accident. They’re all on different, difficult journeys they had no choice in embarking on.

425486_406256686120039_740780384_n And if they’re going to make it through, they’ll need a good pair of shoes on their feet.

Better yet — they’ll need a magical, custom-made, one-of-a-kind pair of shoes. That’s what Madison “Peach” Steiner thinks, anyway.

About three years ago, the 23-year-old artist from Farmington, N.M., founded “Peach’s Neet Feet,” a nonprofit where volunteer artists paint shoes for kids and teens living with diseases, disorders and disabilities.

“We use the shoes as a way to celebrate people,” Steiner told The Mighty. “We say, ‘Hey, these are yours and only yours.’ Kids with cancer may view them as their fighter shoes. A nonverbal kid may see them as a way to show their identity.”

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Steiner estimates that her 30 volunteer artists have painted 2,000 shoes to date. To apply for a pair, parents can [email protected] with their child’s name in the subject line. Steiner then sends an application, most of which are approved. The artists sometimes even visit the kids to make sure they get the design right.

“We want the shoes to come out as unique and individual as possible,” Steiner explained. “They’re a part of the kids that represents who they are. From the beginning, I’ve hoped these shoes would become more than just shoes.”

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Kids outgrow, wear out and get shoes dirty. Kids step in puddles and spill drinks on themselves. Steiner knows this — she hopes that when they’re ready, these kids and their parents will view the shoes as a keepsake, a symbol of a long, hard but maybe beautiful journey.

On one occasion, Steiner delivered a pair too late — the shoes arrived on a customer’s doorstep days after their daughter had passed away from cancer.

“It was a situation where I froze and thought, ‘This is going to be a bad thing or a good thing,'” Steiner recalled. “They’ll view the shoes as something negative or they’ll see them as something to cherish.”

This couple chose the latter. They contacted Steiner to let her know they’d always take the shoes with them — in the car, on errands, on trips and to a memorial service at their daughter’s school, where a tree was planted in her honor.

“They were going to carry the shoes with them wherever they went,” Steiner said. “They were going to continue their daughter’s journey for her.”

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Visit Peach’s Neet Feet’s website and Facebook page to learn more. If you’d like to cover the costs of a pair of shoes for a child, head here.

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