The Compassion that Awaits You in Autism Land

With the sun shining brightly through the falling leaves and the excitement of trophies at the end of the afternoon, it was the perfect day for the last session of the 2013 Fall Open Gym season. Some of the kids were on fire, running laps, swinging on the swings and engaging in conversation with their high school partners.

Others, like Lil D, were not feeling it so much, having minor meltdowns, crying spells and literal dragging of the feet. But it didn’t matter. Because they were out there in the sunshine making an effort. And even if it seemed like they weren’t getting anything out of the activity, their partners were.

Lil D has been involved with the Open Gym program here in Central Virginia from its inception eight years ago. Before we left for the last session of the fall season, I counted how many seasons he had participated  in – 16, missing only the fall 2007 season when I gave birth to Hamza. Open Gym is a program that pairs up children and teens with autism with high school students at a private school where we live).

The point of getting Lil D involved eight long years ago was twofold – I wanted him to have regular, physical activity out in the community, and I hoped this would become something he would enjoy. We’ve spent years trying out a myriad of things, trying to find something he enjoys doing with minimum behaviors.

And so you’d think that after this many years of dedicated participation, Open Gym is something he  really enjoys. Well, sometimes he does, but often it seems to be something he just does out of routine or habit. We’ve given up other activities in the past because making him participate was not worth the return on investment.

But we keep on with Open Gym, year after year, because it is as much about the students Lil D has been paired with as it is about him. Let me explain.

A couple of hours before I took Lil D to his last Open Gym session on Sunday, I read an article out of the United Kingdom in which a deputy mayor said that disabled children should be “guillotined to avoid wasting cash on their care:”

“Retired GP Owen Lister made his sick suggestion to fellow councillors as they discussed sending the youngsters to a £3,000-a-week care home.

Mr. Lister, 79, told them: “I would guillotine them.”

He has now quit as deputy mayor but yesterday stood by his outburst.

He said: ‘I indicated at that point that perhaps the guillotine might be better. These are children you can’t educate.

‘It’s merely a matter of caring for them until they die. The only difference between a terminally ill patient and a severely handicapped child is time.’

The councillor, of Swindon, Wiltshire, argued the funds should instead be used to cut NHS waiting lists.

He added: ‘It shows how peculiar we are as a society on this matter that we spend this vast amount of money caring for disabled youngsters to very little purpose at all.

‘It would be better spent on those who might actually benefit, such as cancer sufferers.

‘We have 5,800 people waiting to go into hospital in Swindon. A percentage of those will die as a result of waiting too long.’”

Some may argue that giving any weight or attention to buffoons like Lister is unnecessary, because his line of thinking is so utterly insane, ridiculous and unbelievable. But I can’t let it go. As the mother of child who is severely autistic, this sticks in my craw. I myself have dark moments at times when I think about the future and wonder how Lil D will fend for himself. Will he hold a job? Will he live in a safe environment? When I’m not here, will there be someone looking out for him?

But for me, it’s never about what purpose does my son have on this earth — What good is he for.

No.

Even though I falter in my faith and struggle to understand the why’s of it all, I know my son has worth and deserves his chance in life. All children, teens and adults with special needs have worth  and something to contribute.

Mr. Lister says, “These children you can’t educate.”

Well, you can. And I don’t need to prove it to you, Mr. Lister. But I do want to say it. You, sir, have no idea.

And the sad thing, Mr. Lister, is that you are not realizing all you are missing in your education by believing that those with disabilities are useless.

This world’s population is extremely diverse in race, creed, religion, disabilities, education, social and economic environment and a myriad of other factors. Autism is increasing at an alarming rate and a host of other special needs exist. And so we must learn to live together. I, and so many other parents with special needs children, am trying to help our kids overcome, manage and live with their challenges so they can live in this world. And we are trying to change world attitudes so that the world will live in love with our children.

And so I take Lil D to Open Gym season after season though he particularly doesn’t seem to look forward to it, because he does gain the great outdoors and physical activity. But also, his young teenage partners gain insight into him. They gain compassion, empathy and special friendships that I have to hope and believe will help shape them into great adults.

As I was walking the track at Open Gym, a boy came running by holding hands with a 13-year-old who is nonverbal. He was agitated, making noises and occasionally beating himself on the chest. His partner, as they jogged, asked another girl if the boy was upset. “Is he ok? I’m not his usual partner , and I don’t know.”

The girl jogged along with them and watched for a minute. “Yeah, I think he’s ok. He does this sometimes and his mom told me that we can run and push through it, unless he stops running. If he stops, then he’s really upset and wants a break. ”

“Come on David!* you’re ok! You’re doing good! We’re so proud of you. If you need to stop, you just slow down and let us know,” she called to the boy.

How would she have known that about the 13-year-old if she hadn’t spent time with him getting to know him?

Lil D’s own partner, who has been with him for four or five seasons now, understands him better as well. He talks to Lil D and offers him high fives. He’ll bounce a ball back and forth with Lil D when he seems to slow down in walking around the track. Recently he discovered that Lil D likes to try and makes baskets, so they’ll spend some time on the basketball court. And two weeks ago, when Lil D had one of the best sessions in recent memory, his partner was the first to comment: “He’s doing so awesome!”

I don’t know what the future holds for Lil D. But I know he has worth. He has a purpose. Because anyone who chooses to be a part of his world, who gets to know him, who takes time to try and understand what he is up against, who extrapolates those  interactions into  a more compassionate and inclusive worldview – they are better for it. They become better humans.

It’s too bad Mr. Lister didn’t receive this sort of education.

*Name changed to protect the privacy of the child.

 

About Dilshad Ali

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