Helena Mary Cole

When you’re the parent of an obviously disabled child, like our Clark, your child is no less beautiful, no less miraculous because of being disabled. When I look at him, I still see myself, I still see my husband whom I love, and I still see a little boy who was born of our union. It’s not like Clark’s disability is any sort of commentary on our relationship, either. I don’t know who would view it that way. Clark is still the most beautiful person in the world to me (along with his brother and sister, of course) for the simple fact of who he is.

That’s worth thinking about next time you’re out and about and happen across a severely disabled person. I know I think about it quite a lot. What if we stopped viewing that person only in terms of their disability, and started seeing them as the child of a mother and a father? Somewhere some mother looks at that person and sees herself, likewise for some father, and that person is the fruit of that relationship.

I was preconditioned by TV sitcoms and various comedians to have low expectations of Clark’s looks in the first days and weeks after his birth. For some reason, the joke always runs that newborn babies look slimy and wrinkled and ugly, and don’t get cute until they’re a couple of months old. I was unprepared for the real experience of first seeing my first newborn baby. Clark was born by Cesarean, so I didn’t see him until the nurse put him on the scale beside the operating table. Of course, I was exhausted and dazed and everything had an air of unreality to it, so by the time I saw Clark, I was deep in the twilight zone. In that state, I can remember thinking, “I think that’s me. I have a clone.”

We didn’t know then that he was going to be non-speaking autistic. But I mean, this is still motherhood, the holiest love I’ve ever experienced in my life. I became aware of the holiness of it very early in Clark’s life – I knew I loved Clark because I was sacrificing pretty much all my time to looking after him. I was giving up needed sleep and many personal hygiene needs. Every aspect of my life had been reshaped to fit him into it. The only way that made any sense whatsoever was to say, “I love him.” But there was precious little in it for me, certainly nothing by way of pleasure, nothing that was enhancing my own happiness, at least not in those early weeks. Bonding with one’s newborn baby can take time in coming even for a non-autistic mom, and it certainly didn’t happen right away for me.

I was also aware in the early weeks of Clark’s life that motherhood was going to be a thankless task. He wasn’t going to remember what I did for him when he just born and had perpetual, seemingly endless demands. After all, I never thought about what my mother went through when I was in Clark’s place. I do now but I never used to. Even knowing that, I did the job anyway. Love is when you make personal sacrifices even if you might never even get a thank-you. My experience was no different from that of any mother in that way.

I won’t say I wasn’t scared, disappointed, or confused when Clark got his autism diagnosis, because I was. I didn’t know anything about autism is those days. And it’s a journey for every parent of a disabled child, starting out in a place where everything seems strange and uncharted, and you don’t know if you’re up for the challenge. But then it occurred to me that I was still going to love Clark. I was still going to be his mother and he was still going to be my son. As long as we still had all that, we were going to be all right.

At the same time, being the mother of a very disabled child is a calling for even more sacrifice and suffering than usual. That’s my opinion. I don’t pray that Clark’s autism will be cured (oddly enough, I’m not sure I’d know what to do with a non-autistic child), but I do pray that his apraxia will improve. Apraxia is the co-occurring condition he has that prevents him from being able to communicate by speaking. I wish he didn’t have to deal with that. I also pray that his fine motor skills will someday improve enough to give him access to writing. I pray that we will find some way for him to communicate. I long to know what my oldest son thinks about everything, really. I am in agony to think of how trapped inside he must feel, and I worry about how much more frustrating that might become for him as he enters puberty and adulthood later.

But there’s this thing wrapped up in being a Christian praying to God: it’s called “Thy will be done.” I don’t know what’s going to happen with Clark. Autism is in the brain; so is apraxia. The brain is so imperfectly understood by humans that we can’t say whether or not his apraxia will improve with maturity. We just don’t know. Maybe Clark’s apraxia is an opportunity for me to achieve greater holiness, or it will serve the same purpose for him. It the ultimate goal is eternity, then it’s good and right to take on whatever we’re called on to bear temporarily.

It’s hard, though. I think what I’m experiencing must be harder in some ways that what your average mother goes through.

I heard a story once about a young hearing-impaired boy who had a near death experience. He fell into a natural body of water while on a hiking trip with his family and drowned. He was clinically dead for some minutes. When he entered the afterlife, he saw some people standing some distance away from him. Now, when one is hearing-impaired, communication never happens at a distance. Proximity is necessary for signing or lip-reading – calling to them from across a room isn’t the way to go if you want them to get the message. The boy, not really understanding that he’d died and was in the afterlife, assumed that the same rule was going to apply with the people he saw there, so he immediately started approaching them.

While he was still a long way off, one of the people turned and saw him, and nothing could have shocked him more than what happened: the person spoke to him mind-to-mind. Hearing didn’t even come into the equation. Neither did audible speaking. In the afterlife, we’ll all be communicating telepathically.

As an autistic person with a non-speaking autistic son, this blows my mind. None of these difficulties that I or my kids experience are going to last forever. They aren’t part of eternity. The thing to do is to get there.

I guess you could say that the thing I’m praying for, in an agony of spirit, is for us all to get there. I’m in the same agony of spirit praying for Clark’s apraxia to disappear or at least diminish because I don’t want him to despair in life. I don’t want him to be denied an education because he can’t communicate. I don’t want him to have to live in an institution. But the greater agony is the idea of him not making it to the place where none of these things will even be thought of anymore.

Once, I heard someone say that praying for someone to be with God for all eternity is one of those places where what we want and what God wants intersect perfectly. As a mother, that is a very encouraging thought.

And so life goes on, right? This is it. I was called to be the autistic mother of one non-speaking autistic child and two speaking autistic children. I feel like I’m making a bungle of it most of the time, but no one ever said I had to do it perfectly.

To paraphrase from The Lord of the Rings, “Helena, if you don’t find a way, no one will.”