Meaningful

By Katie Blackburn
@katiemblackburn

I looked around the small park we were visiting after school one day, doing my usual “there’s one, two, three, four … where is the fifth child?” head count that marks my time in public spaces. It was my husband’s day off work, which means we had double the manpower to put eyes on all of the kids. The two toddlers were nearby, climbing the small slide the wrong way, but this has always been an offense I overlook, so I said nothing. Our oldest was making friends with a girl that looked about her age, and the four-year-old was spinning himself dizzy on some sort of contraption I couldn’t even watch without feeling ill. The location of the fifth child remained a momentary mystery.

I walked around toward the bathrooms, not there. I shielded my eyes from the low sun to scan the grass field nearby, not there. Then I walked back around the play structure to get a better view of the tallest slide. And there he was, standing at the top of the play structure, a mile-wide smile across his face, his pants down around his ankles.

Our six-year-old, the boy whose charm will melt you and whose special needs will break you, was peeing off the edge. 

My husband caught the scene about the same time I did, and raced to the top of the slide before I could say a word. The whole incident, from the moment I didn’t see where Cannon was to the moment his pants were forced back up to his waist was less than a minute. 

But a minute is all the time it takes to leave you feeling crushed.

All the prayers. All the therapy. All the years he’s been fully potty-trained, which was such a victory in itself. All the words and communication skills he’s gained. All the progress he has made. From all the years going anywhere in public was such a risky game, to finally settling in to a season that it hasn’t been. And now, this? Taking his pants off in public? We had seen this behavior once or twice before recently, but hoped it was a fluke of a day and not something that would become a habit. But this was the third time in a week.

I could only shake my head and hold back tears. Not because of a few indiscretions, or the lack of judgment shown by a child with special needs; but because it felt so much bigger, so much more defeating. Few things will steal any hope of a somewhat “normal” life with these special needs like not knowing when and where your child might take his clothes off.

***

Victor Frankl, a Holocaust survivor and prominent psychologist, said that it is through a search for meaning and purpose that human beings can endure hardship and sufferings. He wrote, “Everything can be taken from a man but one thing: the last of the human freedoms—to choose one's attitude in any given set of circumstances.” 

Here’s a man who knows a thing or two about surviving, so when Frankl talks about finding meaning in what is hard, I listen. Because that’s one of the battles of special needs parenting, one of the questions that threatens to keep your life dark and hopeless: how confident can I be in the meaning of something that feels, quite honestly, meaningless?

After more than four years of parenting a young boy with little communication skills and a variety of tough behaviors, I can tell you that so much of the trajectory of our life, our marriage, our joy, or how we parent our other children, begins with how we answer that question. 

***

After ten minutes sitting in the car with Dad, armed with strong admonishments that if he takes his pants off again we would go home—admonishments we can only hope he understands—Cannon was allowed back out on the playground. Like a hawk looking for food below his flight path, our eyes followed the trail of his play on every up, down, slide and swing his body would make. If his hands went near the waist of his jeans, we’d pounce.

Thankfully, Cannon played happily at the park without any more nudity. He was his usual self, delighted to be in his own world of adventure, scripting lines from some of his favorite Super Why! episodes about bridges and barns and finding mysteries to solve. 

As Cannon ran across the tanbark from one structure to the next, a boy who looked a bit younger than him, intrigued by the game Cannon appeared to be playing, came over and asked him, “Do you want to be friends?” As Cannon does, he ran away like he didn’t hear him.

This boy, undeterred, followed closely behind and asked again. “Do you want to be friends? Hey! Do you want to be friends?” It seemed like he would have followed Cannon to the moon to get the answer, sweet child that he was. 

For many years, I have intervened in situations like this. I would walk over to the boy trying to engage Cannon and explain to him in the most gentle but true way that I can, “My son doesn’t have very many words. He doesn’t really know how to talk or play with people. You can keep trying, and he might chase you for a minute, but he might just run away, and that’s not your fault. Thank you for being so kind to him!” 

But on this day, I didn’t have to.

From behind me, our four-year-old, Cannon’s younger brother, came running toward the two boys. “That’s my brother. He can’t talk.” Jordi said to the boy. “He has awwwtism,” he added, drawing out the first syllable like he always does.

The boy just stared back at Jordi, unsure of what to say. “Awwwtism,” Jordi spoke into the silence again, holding his hands out in front of him, like the word alone should make the whole situation clear. 

I contemplated helping the discourse move along, but again, I didn’t have to. Harper, our seven-year-old, joined the conversation and explained everything. 

“Autism is a disability. It makes it hard for Cannon to talk and listen. Did you know a disability is not his fault?”

I smiled. And Harper went on.

“Do you know anyone with a disability? We should be extra kind to them.” And then, almost as an aside, “We’ll be friends with you!” 

That’s Harper: rarely uses more words than necessary when it comes to talking about her brother, but very good at choosing the right ones. But that kind boy was not there for a lecture on special needs, he was just looking for a friend and he found some. Off the three of them went, and I watched my kids bound up the play structure, so proud of who they are.

In this moment, I forgot that just thirty minutes before I was hiding tears from other parents at the park, hoping not many of them saw the incident at the top of the structure, feeling like all of autism was always going to be hard, and meaningless.

***

In the difficult, most embarrassing, hope-stealing moments, special needs can feel impossible; like something you don’t ever get through or overcome; you simply survive today, and the next day, and the next. That there is no light at the end of the tunnel. 

But that’s not every moment.

Because at other times, special needs feels like a gift, both in the form of a truly delightful little boy who makes us laugh and sees the world in such a beautiful way, and as a circumstance that has made every single one of us better, more compassionate, more understanding, and more dependent on Jesus. Watching your young children literally run across the playground to the aid of their brother, explain his uniqueness and defend his innocence, then carry on like it’s just another part of life? Let me tell you, that’s meaningful. 

The good doesn’t erase the hard. We still have to live through those moments and I will never stop praying for less of them, especially for Cannon. He, living with a mind that betrays him on a daily basis, has it harder than anyone else does. But the hard doesn’t outweigh the good, either. We simply hold both. 

And mostly, we can’t stop fighting back against that haunting question: how confident can I be in the meaning of something that feels meaningless? The answer, for us, is that we just keep going. The grief of special needs is different than grief that comes with finality. Not worse, just different. Sometimes hope means having to figure out how to live without, and sometimes it means learning how to live with. Having a child whose life will be incredibly difficult is the latter kind of grief.

There are a lot of answers I will have to do without, a lot of moments I will cry about when I get in bed at night, and a lot of victories I will celebrate wildly. It’s all of it, all at once sometimes. Isn’t that motherhood? But we just keep going, knowing our story is a small part of a much bigger one, and, the most vital piece of truth we could arm ourselves with: God has never written anything meaningless.