Yesterday, I met a woman who has a son in his early 20s that is on the autism spectrum. He now goes to a local college, is driving and lives in the dorms. He is very involved in the school and for the most part is thriving there. He does, however, want a girlfriend and that is a challenge. There are other challenges, as well, as change can be very difficult for individuals with autism. She said to me, “I feel like he is blessed. Like everything he does is blessed. And we have been blessed by him. But not everybody understands. It’s very important you have a support group. You need someone to help guide you or to understand your decisions. I’ve been judged by a lot of people that just don’t understand. Make sure you have support.”
When she said this I fully understood where she was coming from. And I was very thankful to know I have this support of which she is speaking. I could list many, many times I have asked for support or given it, but one event I’d like to share with you stands out foremost in my mind.
When Wil was 5 years old and entered kindergarten, it was a very overwhelming change for him, and thus for me. He garnered a new habit of crawling under the table and planting himself there when he didn’t want to do something, which was a lot. The teacher, paraprofessional and myself tried all sorts of tactics but nothing worked. I was at the edge of desperation when I called one of my friends from Down Syndrome Support Team. I cried, “He keeps crawling under the table and we don’t know how to get him out. I feel like he is going to spend his whole kindergarten year under the table!” Her response to this was to immediately start laughing, then she said, “Oh, is that all he is doing?”
My shoulders instantly relaxed and I surely let out a very audible sigh. She got it. She knew exactly what I was talking about. I thought I called her for a solution, but I realized what I really needed was someone who understood. I uttered two sentences and she innately understood the story and feelings behind those sentences. I didn’t have to preface anything, explain anything, define anything and best of all, not defend anything. The value of that fact is insurmountable.
We, of course, talked solutions on how to help Wil from his under-the-table manners. All of us at DSST have learned to be very creative in our approaches because what works one moment, may not work the very next. We made it through the rest of the kindergarten year with lessened under-the-table incidents, but then we had plop-down-on-the-floor incidents (still do) and all kinds of other fun things. I lean on my DSST friends for help, and they lean on me, and we will continue to do so in the years to come.
This kindergarten moment was an “ah-ha” time in my life. When I approached my friend for help, I thought I was seeking a solution to a problem. But that was secondary. What was most valuable is our connection in that we don’t have to explain Down syndrome to each other. In those two emotional sentences I shared, she knew exactly what I was saying. She knew the whole story without it having to be explained, justified or defended. As individual as each of our children are, and as broad as our emotions are that surround each of our children, deep down we understand one another. That type of bond, brought about by one tiny, extra copy of the 21st chromosome is more powerful and bonding than most any force in this world.
I believe our culture has trained our minds to need to know a concrete answer, and expect the easiest way to feel like everything will be ok. But after this experience, I see it is not that way at all. In fact, to live that way is a sure way to be constantly disappointed in this life. With these friends, with this bond, I’m so thankful to have been put on the path of the scenic route. It takes a little longer, it has many unpredictable twists and turns, and it has been made clear time and again there are no such things as concrete answers. I have learned to get creative and have faith the blessings will come. And when they do, they are never taken for granted but treated as the successes that they are. Life is so much more exciting that way with those little, unexpected blessings popping up just around the next curve.
As the woman said who has the young adult son with autism, I also believe Wil is blessed in all he does. I believe I am blessed to be his mom. In fact, I believe we all are blessed and share a deep inner connection. And that defies any explanation, justification or defense.
Stories of Wil, my son, who has Down syndrome 