Podcast Episode 58 Any journey is made easier by walking with others. That is the focus of this episode – the impact of collaboration with, in this case, the theater as the space where the collaboration starts Continue reading
I like to hold books. I like simple, beautiful covers and plain, clear fonts. I like waxy heavy cardstock that sticks to my hands. I like pages that hold some weight. I like the way words scrape meat off bones. So I try, in the dark hours of mornings, to spend some time with words, both reading and then writing. The window for my own pursuits is limited because I am a parent with a full time job and like most parents my greatest obligation is to my sons, the middle of whom is twenty and has autism.
Of course, it has always been my desire to be equally attentive to all three. Communication with Oldest Son (who is shacked up with his girlfriend in a city an hour and a half away, and is doing his best to avoid my guidance) tends to be in pithy text messages like: “Why do people wear socks with sandals?” “Reference Mom’s pinky toes.” “*Nauseated face emoji.*” I’d prefer an actual listening-to-his- voice type of conversation on the telephone machine, but I’m told that is passé.
Middle Son is like his mom, a morning person. He rises on an internal clock at precisely 7am during these summer months between graduation from a vocational program and the procurement of what we hope to be a meaningful position alongside neurotypical peers. When I hear Middle’s feet hit the floor, my train of thought tends to arrive, with a squeaky halt, at the nearest station; but not because he needs me any longer to navigate breakfast.
After calling a good morning he gets straight to the business of creation. Depending on what is in the refrigerator, he will collect suitable cooking tools and assemble ingredients. This morning he uses leftovers from his dad’s homemade tortilla dinner. Before setting the frying pan on the burner, he selects a tomato from the windowsill, slices it uniformly, then quarters each slice. He methodically chops a portion of onion and green pepper and gets out a bag of grated cheese. While he works, Middle practices conversations that I cannot help but listen to. Most of them begin with phrases like, “Oh, I’m sorry…” or “Excuse me, I didn’t understand…” The words that trail after are not discernable, but I have already left my words, and now I dwell in the full time job of fretting over all it will entail to conquer this journey of living.
After he plates his breakfast, if Middle is particularly pleased with the presentation, he finds me to share in the delight of food arranged beautifully. If there were a restaurant somewhere that was not concerned over having things done quickly, a job in the culinary field might be the best and most logical position. But for Middle, food preparation is more a hobby. Something he enjoys. And I’d hate for that joy to be muddled up with other people’s expectations over trivialities such as time.
When he takes his meal into the den, I hear the television click on which causes my concentration to compete with Spongebob or a Tom & Jerry soundtrack. If he comes in to say, “Hey, good news…” I don’t have the luxury of saying, “Not now! I’m trying to write!” I must stop what I am doing, and look into his eyes and listen. With all my heart. To something like, “New episodes begin on the Cartoon Network on September 3rd.” Because I know so many parents are wishing for such wonderful distractions. Because of all people in the world, I may be the only one who speaks his language. Because when he tells me about the episode where Spongebob gets fired from his job at the Krusty Krab, Middle’s eyes are nervous, even with me, worrying about whether he is speaking with “regular person” clarity.
Since we got his diagnosis at 2 ½, I have been determined to save Middle from becoming Boo Radley, only able to love from a distance. Only able to share his deep understanding through gestures left like talismans in a hollow tree. Lonely. Lonely frightens me most. Lonely is a horrible suffering. You don’t even get to blame somebody when Lonely is the bully. There is only the victim.
Youngest son is still in high school. Because he has a difficult time with beginnings, I read to him a couple days ago the first chapters of his summer novel assignment, Of Mice and Men. A lifetime after my initial reading, I come to the revelation that Lennie is quite complex. Perhaps even more complex than George Wilson. “This book makes me sad,” I tell Youngest. “Mom, it’s not that sad,” he almost scoffs. “Are you and Middle, George and Lennie?” I ask. He just smiles.
Youngest has always smiled when he was uncomfortable or frightened. It looked like a downright smirk when he was in elementary school – would get him into deeper trouble from someone who didn’t know him. And I didn’t know him for the longest time. So wrapped up in Middle Son, so wrapped up in all things autism.
Once on a weekend visit to my mother’s house, I happened upon a book on her shelf entitled The History of Names from the Bible. “It was a gift,” she explained. Leafing through, I found our youngest son’s name. There on the edge of her yellow chintz sofa, I remember a rush of guilt. “We weren’t trying to replace Middle, were we?” I asked. “Of course not,” she lied.
“Hey, Mom, I took my morning medicine and now I’m going to take a shower” calls Middle from the kitchen. “Thanks for telling me,” I say, and up he goes.
At this point, I will get my second morning for about half an hour, before proceeding with the less-inspired work of my day. Middle tiptoes up the stairs. He is quiet because Mom is writing and she needs to concentrate. But my guilt is big and so noisy.
Tracy has been a high school teacher for over 30 years and currently teaches creative writing and journalism.
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Podcast Episode 46. What happens to young people with additional needs when they finish full-time education? How will they find employment? How will they cope on their own throughout adulthood? Continue reading
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School is a bit like a job – there’s the getting up each morning, the travel there, the demanding boss aka teacher, the work, the socialising and the travel home. School occupies our children’s days. But what happens when your child comes to the end of school? What happens if there is nowhere to go?
For many their days are filled with boredom. One mother in Texas, however, has decided to change this. Jamie Wheeler runs Austen’s Autistic Adventures, a social group where people over the age of 18 can meet friends and engage in fun activities to develop their social skills.
When Jamie’s daughter, Austen, graduated from High School, she lost her entire peer group as people moved on with the next stages of their lives. Where her daughter had once found community in the school choir and theatre groups, there was suddenly a void.
Jamie felt like she’d hit a brick wall and certainly hit an access barrier to services for post-18-year olds with additional needs. Determined to ensure that her daughter didn’t feel abandoned, she gave up her career as a college professor to set up the group.
For Jamie, it was about launching a program that was financially accessible with daily activities to allow members to experience real friendship relationships and reap the benefits of being part of a social group.
Another crucial component to the social interaction was having people from the local community sharing their skills and passion with members. This has meant things like visiting an art studio, a chef coming in to cook, and a tour of a local corporate office. Jamie tries to mix up the member’s experiences so they’re always being challenged in new social situations. She tells a wonderful story in the Friendships Matter Podcast of how young people learnt to interact and take turns while stuck in traffic on the way to (and from!) one particular event.
Jamie believes that daily interaction with others, both on and off the spectrum, improves social functioning. This is the case at home and in the community. Furthermore, by going out every day, the community at large gets to know people with autism as individuals, which leads to more, and better, employment and volunteer opportunities.
Overcoming the challenges
The main struggle Jamie faced when setting up was not knowing where to find people. She faced this challenge head on by using social media, setting up a website and getting the program out by word of mouth.
At the moment, Jamie’s biggest challenge is funding, it’s almost her full-time job, as they try to keep the prices for the members as low as possible. The key for Jamie now is to push forward with becoming a public, rather than private entity, and that will then open up more grant opportunities. She doesn’t worry about things not working out, but there can be nail-biting moments from a funding perspective!
Jamie is in talks with an initiative called 29 Acres in Dallas to provide the social component to compliment the 29 Acres housing project. She also has a passion for teaching her working model to others interested in doing something similar in their local community.
Jamie’s top tips for setting up a similar inititiave:
1. Stay community-based
2. Talk to local small businesses for advice/help
3. Have a social media presence
4. Be dedicated
For Jamie, the key is getting the members out of their comfort zones and realising that things change dependant on the time and the place. By shaking up the day to include new things, she has found that their confidence soars. Jamie also emphasises the important of keeping the events to less than 2 hours to ensure that members don’t get overwhelmed.
The importance of community cannot be underestimated when we try to consider how to solve many of the problems that our young people with additional needs face in today’s society. Jamie put it perfectly when she spoke about friendships and specifically, that no matter who we are, everyone wants friends and that it’s a misconception that people on the spectrum don’t want friends. In Jamie’s first-hand experience, she sees young people actively looking at who is going to each event to check if their friends will be there too, because they have built that crucial friendship bond. Jamie shows us what focus and enthusiasm can achieve, there is no doubt her future plans will be a success and continue to make a massive difference to young people’s daily lives.
If you have a similar story to tell I’m very keen to hear from you. Please get in touch because so many others can learn and benefit from your experiences.
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