My son struggled to communicate the simplest requests, falling into the 12 month old expressive language category at 4 years old. He was unable to string words together into simple phrases, tell me where he hurt, or explain why he was freaking out – again. He didn’t call me mommy, he didn’t know how. He would wake up in the middle of the night with the scariest night terrors I’d ever seen. He wouldn’t point to objects when cued, he stared at ceiling fans for hours, he played by himself no matter how many times we brought him to playdates. Despite the singularity of his play, he was a content, happy, loving kid. One who would give up his only toy or piece of food to his brother because he saw it made him happy. He was, he is, the most giving and selfless child I’ve ever met.
Only when over stimulated did the switch come on where we didn’t understand or recognize who he was. Enraged and blank, staring right through us as though he was lost in another world simply because he had too much stimulation that day. Sometimes he would go days without sleeping. When he was 5 years old we sat in the IEP office as the countless test results were being read to us. He’d had a brain scan, auditory testing, speech evaluations, vision screenings, behavior studies. And then the words that back in 2003 were still highly misunderstood, hung in the air. “He has autism.” They concluded the meeting with the recommendation that he be put into a special program instead of enrolling him in kindergarten. One of the women leading the meeting looked me in the eye and said, “he’ll never go to mainstream school. You don’t outgrow autism. There’s nothing you can do but adapt to make his life easier.”
I wanted to believe she and that room full of experts were wrong. Call it motherly instinct, call it being stubborn, but I knew that my son who had so much joy, and kindness and sweetness in him had a bigger purpose. I refused to believe that whatever challenges he would face could not be overcome. Maybe I couldn’t cure him, but I was determined to fill in the gaps enough that he could learn with the other kids. At the time there were no autism programs, his only option was regular school or a class for severely developmentally delayed kids where I feared he would not progress. I demanded a waiver from the school, and I enrolled him in kindergarten and then signed him up for a half day program that was being developed as a pilot for kids with similar symptoms as him.
I made picture books of everything in the house and put them onto key chains and hung them on a necklace. My son would flip to the picture of what he wanted and we started being able, ever so slowly, to communicate. Sometimes easily, sometimes through tears. Eventually words or parts of words, would replace some of the pictures. We would remove those pictures from the chain and eventually, we outgrew the necklace entirely. We made schedule charts with velcro pictures and moved pieces around as we accomplished tasks like getting ready for bed or getting through the super market. Every year we came up with ways to train his mind, help him navigate his emotions, help him find connections with other kids, and every year he blew the IEP planners away with his progress. His teachers remarked every year that they didn’t need their clock because Michael always knew when it was time to move onto the next part of the day. Some days there was an assembly, or a substitute teacher, and those days were long and miserable for him. One day he came home and told me a joke. Not unusual for most kids, but for spectrum kids jokes often go way over their heads or are taken literally. Michael told us a joke he heard at school, and he laughed and laughed. And I cried silent tears of progress.
Despite struggling to understand team concepts, when he was 7 we signed him up for soccer. The coach wouldn’t put him on the field because he skipped instead of ran. But we continued to offer him opportunities to play sports. We tried to avoid any pressure to perform but encouraged him to participate. He loved it. In middle school he hustled more than any person on that team and he encouraged everyone – never complaining about playing time. He spread joy around to everyone he played with, and when he got excited on the field, occasionally, he would still start skipping.
In high school he signed up to run cross country which took team concepts out of the picture. It seemed like a great fit as we started focusing on individual sports. But he was sidelined with a common growth plate injury called Severs that caused miserable pain in his heel. He limped through the runs for several weeks until we begged him to take a break from the pain. He wanted so much to succeed in a sport like the other high school kids and was very disappointed that he couldn’t participate..
So instead, after a few months off to heal, he joined the tennis team, having never played tennis before. He wanted to do well at tryouts so he spent every day on the court with a bucket of balls hitting it to anyone who would play or to no one if he didn’t have a partner. He made the JV Tennis team and played a season.
But the next year, much to my heartfelt delight, he said he would like to play lacrosse. As a career lacrosse coach, you can imagine the immediate shopping for new gear and flurry of excitement that I experienced. But despite the excitement, in the back of my mind I wondered if making a high school team, with the stress involved, the demands, the social aspects, all those rules and that communication would be possible for him. Michael has struggled before, he’s never gone the easy road, he’s never chosen to sit out a dream, and because of that he has never truly failed . We were proud that he wanted to try, and ready to support him. It’s the same feeling I had last year when he told me he signed up for 3 AP classes, I knew this was going to be hard.
He threw himself all the way in, as he always does, and spent up to two hours a day on the rebounder before practice, then stayed after practice to use the wall. He ran every weekend, watched film, studied others playing. The field concepts were coming slowly but he refused to give up. Despite being behind the other players and not seeing a lot of field time the first year, he hung in and he started to look like a lacrosse player. He came back the second year and saw quite a bit of the field during games, his hard work was paying off, his devotion was canceling out his struggles. Playing lacrosse was giving him a piece that he was missing. The teamwork, commitment, controlled stress, and ability to lead- yes lead!- were helping him be more successful off the field as well. A more confident, organized, able young man began to emerge.
At the end of his junior year of high school, my son who was never supposed to be mainstreamed in school, who skipped and danced around on his toes, who couldn’t call me mommy, now has a 3.8 GPA, took 3 AP classes, leads a church group, got his driver’s permit, actively participates in FCA and several other groups, and plays lacrosse. It is because of this tenacity that I will never ever believe in limits, labels, or impossibilities.
Michael’s advice to spectrum athletes:
Be prepared for challenges such as the high commitment level which can make school work harder to complete. Spectrum kids often don’t sleep well. Adding a sport to an already long day with very little sleep can wear you down and trigger over-stimulation reactions. Find times to nap and set a schedule that makes getting to bed earlier a priority. Use your IEP helpers, when you feel like you’re getting behind at school and exhausted make sure you ask for the help you need. Relating to other players can be hard, especially when the conversation goes outside of lacrosse or things that you are directly involved in. Don’t feel like you have to always be in the group, sometimes it’s ok to do your own thing and take the space you need, and sometimes you need to be with the team. Find the balance.
“Honestly – don’t change who you are, just be yourself, do it for the love of the sport. If you love the sport you will get recognized- your coach will recognize that. Go at it with confidence. Once you feel fear and pressure you will start to back out, embrace the players who accept you and don’t let the other players get in the way of your love of the game.”
For Coaches Coaching Spectrum Athletes, Michael’s advice is:
When you talk to the group sometimes spectrum kids get lost in the instructions, they might need it broken down 1 on 1 again later when there aren’t distractions. Auditory explanations are near impossible. Being able to watch the drill once before having to do it helps a lot, or having it drawn out quickly makes it all click. Autistic kids are incredibly smart, some of them, like Michael, scoring off the charts in academic testing. They get it, it’s just a matter of presenting the information in a way that their brain can organize it efficiently.
Don’t criticize, give instruction. A criticism adds to an already frustrated athlete who knows they are lagging behind other players. Feedback on how to fix it is what they thrive on.
“I know I could get to goal if I didn’t panic when I get the ball. The game moves fast and I start thinking of all the things I have to remember and then I make a mistake or pass the ball instead of being a threat myself.” Giving these athletes one simple instruction to focus on helps clear their mind when they get on the field.
“Most of all, let them play. If a spectrum kid works harder than all the other kids, he deserves the chance to try it on the field and the get experience. Reward him, put him on the field and don’t pull him off the second he makes a mistake. Even more than other kids, we learn from mistakes. It goes in our filing cabinet, and it makes us better, faster.”
Thanks to a great coaching staff at my son’s high school, camps like FCA Lacrosse in Gettysburg that encouraged him to be himself and to be confident, and programs like NG3 (NG3.org) who build strong teams and connected teammates, who worked closely alongside our high schools girls and boys teams, Michael has had an incredible experience playing lacrosse. It is my hope that everyone can experience the joy and life lessons of team sports. The more we understand about kids on the Autism Spectrum, the more we can do to include them and give them opportunities that never would have been available to them before!