Podcast Episode 54. All around us are people working in their local communities to make the lives of young people with additional needs better. 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.
Podcast Episode 53. Getting to know any young person is the essential first step in understanding what they need when it comes to helping them achieve greater independence. This is the core ethos of this week’s podcast guests Trudy and Darren Dzirasa-Payne from Impacting Lives. Continue reading
Credit scores, credit histories and credit ratings may seem alien Continue reading
Podcast Episode 52. Rather than waiting until we have to act the better option is to start exploring what is already out there and start actively working towards creating solutions. This is exactly what this week’s podcast guest Mike Sweeney is doing. Continue reading
Podcast Episode 51. At some point in all of our journeys, we need support. Some of us find it in family and friends, others look to support groups. Continue reading
This is a celebration episode, celebrating reaching 50 episodes, celebrating all the amazing guests who have been on the podcast Continue reading
Podcast Episode 49. Job carving can help create sustainable employment opportunities according to this week’s podcast guest Neil Willows Continue reading
We all know playing sport is good for you, but I didn’t really encourage my youngest daughter to get involved in sport at school. Why? Well, it was a combination of reasons. She has a problem with coordination so many sports would not have suited her. I worried about the impact on her confidence if she was the worst at the sport. The last picked for a team, many of us have been there, I wasn’t the first choice. I’m guessing my daughter would have been the last choice. She looks a bit different, so I worried about others making fun of her. She wasn’t as mature as her peers, so I worried about her saying or doing the wrong thing. So basically, I worried about a lot of what if’s.
This may have been different if I had known Lisa Pugliese, from Love Serving Autism. In the latest podcast, she explains how accessible tennis can be for young people with additional needs. Because tennis is a repetitive sport, it suits young people who take time to learn new skills and/or don’t like change. Like all sports, it offers not only physical benefits but also has social benefits. However, because it’s not a team sport, social skills are less essential in the beginning. Part of Lisa’s approach is using tennis as a therapy to slowly build the physical and social skills of the young people on the program. With tennis, there isn’t pressure over letting teammates down. Lisa shows how tennis can be made to fit the young person rather than them having to fit the sport.
If I look back to when my daughter was younger, armed with this insight, I can find other sports she would have fitted into. Now, when I hear from other parents who did take the risk, I know how important sports like football are to their children. Indeed, it’s given these young people more ability to deal with rejection, which makes them more determined, and helps them navigate the social world in a much more mature way.
I’m not saying, of course, I let my daughter do absolutely no physical activity. If anything, I pushed her into other things because she wasn’t doing organized sport. Her physical exercise became walking the dog and walking to places instead of driving. Fortunately, we were able to teach her to ride a bike, all credit to her Dad for that one. In fact, you can download his 9 steps approach to this from the website. And it should have been more obvious from that success why playing a sport would have been good for her. After she learned to ride a bike her confidence soared because this was something she was good at. In fact, we still laugh about when we took her out on her bike and we decided to walk – after all, how fast could she go. We soon learned pretty fast as we sprinted along the track just trying to keep her in sight! We never made that mistake again.
But it isn’t just the physical benefits of sport she has missed out on, it’s the social aspect that is actually more important. Like many young people with additional needs there is a very real danger that she can become isolated. Sport helps with this because you become part of a team, with a common purpose. It builds your sense of belonging. She would have learnt to follow the rules. She would have learnt patience because I doubt she would have been a natural at any sport, so she would have needed to practice and practice some more. She would have developed more resilience as her team won and lost. These are all characteristics she has without sport, but I genuinely believe she would have developed more of each if I had worked to find her a sport that fitted her.
Of course, there are always what if’s in this journey with our children. I have at least one of those each day. The important thing is to recognize when we get it wrong and move on. So yes, I’ve already started looking for a local tennis club so see if they fit her.
Podcast Episode 48. Tennis, because of its repetitive nature, is an excellent therapeutic tool which can develop not only physical skills but also builds language and social skills, Continue reading