Better of: Blind and Search
This is a Best of post from April, 2017. Cathy is enjoying a day off.l
By Cathy Jameson
I know I’ve mentioned it here before, but I’m really proud of my kids. They are not perfect. Hardly. But they are a lot of fun and pretty creative, too. I love to see their creations and am in awe of how quickly and easily it is for them to think outside the box when they play. I always encourage them to think outside the box, not just when they play or when they’re trying to solve an academic problem, but for life in general.
I’m not sure what inspired them to play a game they call Bind and Go Seek, but it is absolutely one of the best games my children love to play. It’s easy to play and could fill a whole morning or afternoon. What are the rules? Have fun and be careful. How do you play? Imagine 3 of Ronan’s siblings giggling with glee as they tiptoe, scamper, and chase each other through the house. Then, imagine the other sibling trying to keep up with the others while blindfolded. So far, knock on wood, no one has been injured during a game. They’ve grown closer to each other, albeit not permanently, but each game evokes stronger sibling ties as well as hours’ worth of laughter.
One night, while watching the blindfolded sibling search for the others, I couldn’t help but think how helpless that child was. Blind. Unable to use clues in their environment they normally rely on, they had to rely on instinct and their senses. Oddly, they didn’t think they were helpless at all. Rather, for that night’s seeker, it was the opposite! It was thrilling, exhilarating, and exciting. With no light, with no sense of direction, and with nothing but her instincts as her guide, she confidently prepared to search for the others.
First, the countdown.
Then, the bellowing of a friendly warning, “Ready or not, here I come!”
Thinking about how many obstacles stood between her and her siblings, I cringed. That didn’t stop that brave, little lady. Gleefully with arms outstretched, and with a pep in her step, she set out to tag one of her sisters or her brother.
The game was afoot.
I wanted to blurt out a litany of warnings – Be careful! Go left! Watch out for the chair! the wall the wall Watch out for the wall! As usually happens, someone giggled, and the seeker caught a break. Searching for the source of the giggles, she headed in that direction. The giggles were stifled and silence filled the house. It became increasingly harder to seek the sibling the longer the game went. The seeker didn’t give up though. None of them ever do. How determined and willing to walk blindly around the house for as long as they have in the past while looking for the siblings, reminded me of some of the parents I’ve run into over the last dozen or so years – none of them have ended the pursuit either.
Due to the nature of the spectrum of issues autism can bring, I’ve found that parents pursue different things. Some wish to find the “magic bullet”, with it a pharmaceutical medicine or a concoction of supplements to reduce or eliminate a negative behavior. Others pursue more than just an appropriate education – they look for an enriching environment where their child is not just accepted, challenged and taught real-life skills, too. Others search for answers. They desire to know all there is to know about autism, to include how their child fell onto the spectrum. Of all the searches one can do, that search can be the most difficult. At one point, it was for me.
I don’t have to blindly search for answers these days. I have many more resources available now, literally at my fingertips, than I did when my son first got sick. Back then, in the early 2000s, I relied on books and other academic resources at a college library. Today, I can find those resources and so much more online. Studies on vaccines, research papers about autism, medical textbooks about neurological disorders and gastrointestinal issues, for instance—those are all readily available, and not just to me but for anyone who wishes to take the time to educate themselves on the many topics related to autistic
Some days I feel as if I’ve looked up all there is to know about autism. I know I haven’t. Plus, the science isn’t settled on the disorder nor on what causes it. If it were settled, those treating children with autism and those who are constantly working on bettering the lives of those with autism would be out of a job. Those roles are shared across several occupations, but for the most part, the role of caring for and managing every aspect of that child’s diagnosis falls on the shoulders of the parents. Of course, professionals, like teachers, therapists and medical providers, are also pitching in. Professionals, particularly the ones whose passion drives their career, have a grand opportunity—that is, to help parents make the difficult but necessary decisions to meet the needs of their child’s health, education, and quality of life.
Many of the decisions that need to be made are equally important. To make informed decisions, parents must learn how to navigate the system. For some, especially for those whose child is severely affected, that turns into a full-time job. With how much there is to know and with how overwhelming it might be in the beginning, parents may feel as if they are blindfolded seekers. They embark into the unknown not knowing which direction to go or whom they can trust. Before they gain their footing, they may feel lost, lonely, and completely swamped with words, terms, and topics they never knew existed. With time, though, and with assistance from parents several steps ahead of them, those parents starting out can find that, eventually, some things will get easier.
Two weeks ago, I needed to push the Easy Button. Thankfully, that day came during a slow week. With the kids on spring break, I, too, took a “break” and stopped reading I was doing. I had started a new search on autism and seizures as well as another search on a therapy we’ve not yet tried but were interested in. The more I read, the more I needed to look up. Not surprisingly, even for a veteran seeker -mom like me, I started to feel overwhelmed. Instead of continuing and catching up on the latest autism news, I sat down on the couch in the living room and just sat. My kids swarmed wanting to know what we were going to do that day. I told them nothing. It was the first day I didn’t have any plans. I needed a day to not race out the door, to put the books down, to not worry about autism and vaccines and maladaptive behaviors in public. I wanted to just be. So I sat. The kids were disappointed that I wasn’t taking them somewhere fun that day, so that’s when they started a marathon Blind and Go Seek game. With just a blindfold, four excited and willing siblings darted this way and that while filling our home with lots of smiles and tons of laughter.
When I’ve been the blindfolded seeker, I wasn’t playing a game, there was no laughter, and I rarely smiled. But especially knowing that Ronan is the ultimate winner, I was very willing to continue seeking. After pushing the Easy Button those few days ago, I got back into the game. I found time the next day to read one article, to take a few notes, and to feel positive in my search again. I’m not done doing the research I need to do, but I’ll pace myself better. I’ll reach out to others as well, including those who’ve offered to lend a hand. And I’ll remember that none of this has ever been a sprint. It’s been a marathon of learning, of trying and of finding strength to taking one confident step after another. As long as I stay in a forward direction, I’ll be sure to keep on going no matter the obstacles.
Cathy Jameson is a Contributing Editor for Age of Autism.