Friday, February 14, 2014

For Colin, on His Viral Eleventh Birthday

Shannon Des Roches Rosa 
www.squidalicious.com

By now you've probably heard of the Happy Birthday Colin effort, in which a socially isolated (though not autistic) boy's mom created a Facebook page to cheer him up for his eleventh birthday -- and the page went viral, with nearly 2 million Likes as of this writing. Colin's mom writes:
"I am Colin's mom, I created this page for my amazing, wonderful, challenging son who is about to turn 11 on March 9th. Because of Colin's disabilities, social skills are not easy for him, and he often acts out in school, and the other kids don't like him. So when I asked him if he wanted a party for his birthday, he said there wasn't a point because he has no friends. He eats lunch alone in the office everyday because no one will let him sit with them, and rather than force someone to be unhappy with his presence, he sits alone in the office. So I thought, if I could create a page where people could send him positive thoughts and encouraging words, that would be better than any birthday party. Please join me in making my very original son feel special on his day."
Colin's mom means so well, and I feel for her, too -- it hurts like hell to see your kid get left out or bullied. And the public outpouring of yay for Colin is a wonderful thing. Yet Colin's mother has now shared with millions of people that her son is "challenging" and that other kids don't like him. And then Colin's going to see that millions of people read those negative things about him.

My primary worry is that it's counter-intuitive to try to support a socially struggling kid by publicly emphasizing the negative aspects of those struggles in front of the kid. When I expressed my concern to autism parent and autistic advocate friends -- many of whom declined multiple opportunities to "like" Colin's page -- they had even more insights.

Parent Mary McLaughlin wrote:
"It's so easy to let the "yay" cloud the other considerations, but they are so important. I've been planning on working with my son to send a card to Colin. I think I'll spend a lot of time crafting a note to enclose as well."
Parent Stacey Ashlund added:
"This story bugged me for another reason -- several thousand "likes" on a FB page is STILL not going to have kids come to his b-day party, and still won't get him invited to theirs -- it's a "feel good" story that is unlikely to "raise awareness" enough to generate behavior change IMO."
And then autistic advocate Kassiane Sibley pointed out that Colin apparently asks his principal not to punish the kids who bully him, which brings up even more complications. Kassiane wrote:
"I don't doubt that she loves her son and really truly thinks she is doing what is best. And I wouldn't be surprised if a billion likes make Colin feel better about himself.

"But, acting local is both harder and going to make more of a difference to that particular child. Raising global awareness of inclusive practices? That's good, a thin layer of good over a wide area of space over time.

"Colin needs that whole layer to be folded up all in his space NOW. It sounds like he is exactly the kind of kid who would want to help the most people. But. He will be able to help so many MORE people if he gets what he needs for himself.

"(And there's probably no way to convince him of this. But. Gah. And that is why the powers that be need to step in and not make it his choice at all, but just say 'So we are not tolerating this crap being done anymore.')
"
So, what can be done to support Colin in real-world, real-change ways? 

I'd suggest that Colin start working on believing in himself as a Not Wrong person, either by getting in touch with or at least reading the work of teen self-advocate Henry Frost, who writes,
"Know you are not a burden or trouble for being. You are a person who has every right to be. A family that is saying love but saying you are so hard so wrong for not being as they wanted. The family is wrong. Not You. A school segregating is wrong. Not You."
Know you are not a burden or trouble for being. You are a person who has every right to be. A family that is saying love but saying you are so hard so wrong for not being as they wanted. The family is wrong. Not You. - See more at: https://ollibean.com/2013/11/14/wrong/#sthash.2d2aSfjM.ejHnDdXK.dpuf
I would also suggest Colin's mom look to autistic mentors like Karla Fisher and autism parents like Tasia to restructure Colin's school environment so it actually works for Colin. It may be that the accommodations Colin needs to thrive at school bear no resemblance to what his family and school think he needs.

I would ask that you not say negative things about kids' differences, challenges, or "struggles" in front of those kids. There are different ways to phrase things, such as "Colin has said that he would like to find friends" or even "Colin is the best kid ever, but for some reason the local kids don't understand how great he is." 

I would ask that any time you encounter a person saying negative things about a kid in front of that kid -- even if they're doing so out of the very best intentions -- please speak out, however you can. And if you hear about kids being bullied? Please speak out, please do something, however you can.

And, along with all the other well-wishers, I really truly hope that Colin has a happy eleventh birthday on March 9th.
Know you are not a burden or trouble for being. You are a person who has every right to be. A family that is saying love but saying you are so hard so wrong for not being as they wanted. The family is wrong. Not You. - See more at: https://ollibean.com/2013/11/14/wrong/#sthash.2d2aSfjM.ejHnDdXK.dpuf

Friday, February 7, 2014

Educating Autistic Students in Ghana: AACT's Success Story

Shannon Des Roches Rosa
www.squidalicious.com

The Autism Awareness, Care, and Training (AACT) school in Accra, Ghana reminds me of my own autistic son's school here in California. Both are places of peace, calm, and competence—plus the occasional whoop, shout, or "eeeee"—while students and staff radiate not just positivity but confidence. This is because students are encouraged to learn to the best of their abilities, and are appreciated for exactly who they are. AACT is a remarkable place.

AACT staff and students seated around a table.
[image: AACT staff and students seated around a table.]

It is refreshing to find an autism school anywhere in the world that focuses on helping its students gain skills and work towards greater confidence in themselves, instead of trying to make autistic kids into non-autistic kids—destroying square pegs by pounding them into round holes (to paraphrase writer and autism parent, Paul Collins). It was a delight to visit AACT, meet and interact with the students, and talk with the staff about the work they do, and why the school is unique in the region.

Serwah Quaynor and Shannon Rosa onsite at AACT.
[image: Serwah Quaynor and Shannon Rosa onsite at AACT.]

AACT was founded when Mrs. Serwah Quaynor returned to Ghana after many years abroad, and was unable to find an educational placement that worked for her (then) teenaged autistic son, Nortey. Instead of allowing her frustration to get the best of her, she tapped into autism education philosophies she had learned about when she lived in the United States, and drew on them to create AACT.

Mrs. Quaynor is not only an educator and an innovator; she is a force for social change. In Ghana, as in many parts of the world, autism is frequently underdiagnosed, misunderstood, and stigmatized. In Sub-Saharan Africa, according to Virginia Hughes at the Simons Foundation Autism Research Initiative, "children tend to be diagnosed much later than their counterparts in the U.S., and are more likely to be nonverbal." To complicate matters, many Ghanaian and West African cultures view neurological conditions like autism as a curs—on both the child and the family. So Mrs. Quaynor is not only striving to give her autistic students the education they deserve, but to help their families and society understand her students as people to be accepted and included, not avoided and shunned.

Two AACT staff and one student sitting on a colorful rug.  One staff is putting together a velcro visual schedule, another is assisting the student with objects in a rice-filled sensory bowl.
[image: Two AACT staff and one student sitting on a colorful rug. 
One staff is putting together a velcro visual schedule, another is
assisting the student with objects in a rice-filled sensory bowl.]
The AACT attitude towards understanding autism is practical, in a characteristically Ghanaian way. When interviewed about what autistic people are like, a former teacher of Nortey Quaynor’s had this to say:

“Nortey is a good guy only if you understand what autism is,” said Abeiku Grant, who taught Quaynor at the Autism Awareness, Care and Training Centre in Accra when he was younger. “If you don’t, you see him as a bad guy because maybe you tell him to do something and he does something else.”
Nortey Quaynor and another student, operating a large paper slicer to make paper beads.
[image: Nortey Quaynor and another student,
operating a large paper slicer to make paper beads.]


AACT is a success in that all its students are treated like "good guys," but making the school work as well as it does is an ongoing effort, and not always on that proceeds under ideal circumstances. The school is quite small and can only accommodate a few handfuls of students, which is distressing to Ms. Quaynor. She is constantly fielding requests from families about openings for new students. Funding and materials are also an ongoing issue. And while many staff are local, others, including speech therapists or behaviorists who come from other countries, aren’t always able to make the long-term commitments that underpin the structured, consistent, and dependable environment that helps so many autistic students thrive. I am also guessing it is stressful to be the tireless and irreplaceable Serwah Quaynor in a city that could use a dozen more people like her—not to mention many more schools like AACT.

But still, the school is a wonderful place. Students of all ages seem happy to be there, are given plenty of sensory breaks, enjoy comfortingly structured days with plenty of visual supports, and are taught with that magic good teacher balance of firmness and love. There are no aversives or punishments, just positive reinforcement for personal goals achieved. And there is plenty of time for recreation and exercise such as dancing, which can be critical forms of stress relief for autistic students, due the effort it take for so many of them just to keep it together in a classroom setting.
Close up of a string of paper beads made by AACT students.
[image: Close up of a string of paper beads
made by AACT students.]

AACT is also where I witnessed a stunning example of presumed competence. To earn money and also as an occupational therapy exercise, Nortey Quaynor and fellow students spend part of their day slicing colorful paper calendars into extremely thin triangles, using the kind of quasi-guillotine paper slicer that always gives me the willies. They then wind the paper strips into beautiful beads, which are then turned into necklaces, which are then sold. They do this entirely independently, with the staff's full confidence that the students can handle themselves. This is not an activity I would trust myself to carry out without injury or with any likelihood of ending up with a usable product, yet, like so much at AACT, operating serious equipment and creating legitimate works of art were just part of the routine.

Again, AACT is a remarkable place. And I hope Mrs. Quaynor gets all the support she needs to make her ongoing autism understand and acceptance efforts a success.

The AACT website is www.aact.org.gh.


Do Me a Favor

Christine Stephan
daysixtyseven.blogspot.com


I don't like to advise people. I don't like being in a position of telling others what to do. But I am a person of strong opinions. And just this once I'd like to tell you to do something. And by "you," I especially mean those who love and support non-speaking autistic people of all ages.

I want you to promise that when you find yourself explaining to someone that you have no idea what your loved one knows or understands that you will also quickly explain that you believe he understands everything and just hasn't yet found a way to let the world know.

When you observe your loved one behaving in a way that you don't understand and he can't explain, promise me that you will believe that he is trying the best he can and that he is as frustrated -- probably more so -- than you.

When you see that she can't master skills that come easily to others and that dark fear that it will always be this hard creeps into your heart, promise me to believe in her ability to learn and achieve.

Please, just believe.

It's the most important thing you will ever do for the person you love.

Believe, because if you don't that's just one more hurdle for this person to overcome. And believe me: they have it hard enough already.

Only 18 months ago I was working on 1:1 correspondence with my son, who was nine. When I asked him to hand me 4 plates each night before dinner to set the table, he would hand me plate after plate, counting each as he went: 1....2....3.....4....5....6.....  He would have kept going if I didn't stop him along the way. Each night was the same. I assumed, wrongly, that Oliver didn't fully understand the 1:1 concept.

Now that Oliver can communicate I see that his difficulty was in another kind of processing. He couldn't simultaneously process the counting and the physical actions. I cringe now when I imagine the pressure he must have felt to get it right when his body and brain weren't working together. I understand now that his true challenges were masked by how hard he works to compensate for a body that doesn't cooperate. And even though my boy and I are pretty much inseparable, and I like to think I'm pretty observant, I had no idea that he had so much trouble controlling his body. If you're ever lucky enough to see this boy on a bike you'll know why. On two wheels he is grace personified.

It never occurred to me to load his iPad with math apps geared towards fractions, decimals, and algebra but now that I see how easily he navigates them I regret that they weren't there to explore alongside the colorful counting apps that I thought he needed. I regret that I didn't give him the opportunities to display an interest in things that I assumed he wouldn't understand. I regret that my assumptions limited him when they should have been expanding his world.

I regret.

So now promise me that you won't also feel this deep regret at some point in the future.

Go now to that person you love and tell him that you believe.

Even if this person you love can't eat with a utensil. Even if she hasn't yet mastered toileting. Even if she can't manage the simplest communication system and even Yes and No are hard. Even if he never seems to be paying attention and can't sit still for a second. Tell him that you believe. And keep saying it until you are both convinced.

And on the days when it's hard, say it even louder.

Fill this person's life richly with thoughts and ideas. Read aloud what interests you and share your thoughts and opinions as though your words are a life line because they very well may be what is feeding his spirit. Play audio books before bed, choose classics that appeal to people of any age. Listen to the news together, NPR, TED talks, documentaries, and then talk about it at dinner time, even if yours is the only voice. Both of your lives will become richer.

Only 18 months ago I wasn't sure my son knew his last name or understood, exactly, the concept of birthdays or anything abstract.

Two months ago he wrote these words: "I couldn't tell people that I understood everything. People treated me like I just didn't think but that is all I did."

So promise me that you will believe this also to be true of the person you love. Sustain your belief even on the hardest days -- because yes, it seems impossibly hard some days -- and say it loudly for everyone to hear.

Because by making this promise the only thing you risk losing is regret.

----

Previously published at daysixtyseven.blogspot.com.