“Nobody realizes that some people expend tremendous energy merely to be normal.”
One of the first things my good friend Christy shared with me about being a special needs mom is that it is isolating. It’s isolating for so many reasons. There is the obvious one – that no one seems to know exactly what you are going through. And then the reasons you can’t anticipate until you experience them. The not being able to sit down to enjoy yourself so why bother going? The emotions you don’t really want to claim but still exist – the pain of watching typical children having fun, the irritation listening to the parent of the typical child bragging about every little thing you would be too if only you were in her shoes, the anger toward others for daring to have the all-too-human reaction of curiosity, pity, or fear of your child. Oh yeah, it’s isolating, no matter how much your friends and family still love you and want your company.
People who haven’t experienced it don’t get it. And, to be fair, “don’t get it” is a popular phrase used in our community to describe everyone not us, but it isn’t really fair. It’s not my fault that I “don’t get” what it is like to be a POW, cancer patient, or natural disaster survivor. I simply haven’t experienced it. And neither have they experienced what we have. It just is. I suppose twinges of resentment toward those who don’t get it probably just are as well. Neither good nor bad – just there. I think what makes it hard, however, is that people don’t understand just how traumatic the experience can be. At least in the early days when the future is hazy at best, when you are still attempting to bargain with God, when you aren’t at all certain Fate knew what it was doing assigning this seemingly overwhelming job to you. There are increasing numbers of parents of special needs children being diagnosed with post traumatic stress disorder. The same disorder that affects victims of violence and disaster. But it is invisible in a special needs parent. After all, to the rest of the world, nobody died. And the people who like and love you quite naturally want you to be the same person you were. But you aren’t. You aren’t your normal self. Because normal no longer applies to any facet of your life.
This weekend, I had an extraordinary experience. We took our little family of four to visit a high school friend of my husband’s, Matt. Matt was in town for Easter visiting his parents at their home. He brought his 4-year-old NT child Gavin with him. His sister was there with her 14 month old little girl as well. Matt was not able to bring his wife or their oldest child Deacon- a sweet little 9-year-old boy with severe autism. Deacon doesn’t travel well right now, so this was just a quick visit to see his family.
We arrived for dinner. And I didn’t have to launch into a long explanation for why my son wouldn’t eat their food. We went into the play area of the living room. And I didn’t have to endure the seemingly endless attempts to engage him with toys. When I told them he likes to bat at things on a string, they took it in stride. Matt’s dad and mom were not at all afraid to touch Callum, yet at the same time knew to go about it slowly. And they delighted in him, talking about how much he reminded them of their grandson. Soon, Matt’s dad had Callum on the back porch in a swing. And my child, who normally is happy but fairly mellow while visiting, was shrieking in giggles and enthusiastic vocalizations. Soon, he had Callum and the other children loaded up for their first tractor ride. Matt’s sister and mom weren’t fazed by Callum at all. And Matt’s 4-year-old Gavin didn’t even once look at my son strangely. In fact, that precious little boy – upon listening to me repeatedly direct Callum to communicate what he wanted with a sign – actually walked over to me and, in all seriousness and concern, informed me, “He can’t talk. He can’t tell you.” And then, satisfied he had taken up for Callum, ran off to go play with my daughter.
I even got to sit down and chat for a while.
Before we left, Matt’s parents invited us to bring Callum any time we needed a break. “We know how to do this. We’ve done this before. Seriously, anytime”, Matt’s dad offered.
It was the most…normal visit with friends and family we’ve had since beginning this journey with Callum. If you have been on a similar journey, then you know exactly what I’m talking about.
I don’t mean normal in that I’m calling my child abnormal. He isn’t in the least abnormal. He is a just a little boy who smiles, gets excited, laughs, giggles, loves, and plays like any child. He just expresses all of those a little differently. I mean normal in that I wasn’t the least bit on edge. I didn’t need to explain or apologize. I wasn’t the least bit worried my child would be misunderstood. You know — normal. And, though Callum is only three years old, I hadn’t had a taste of normal in what seemed like forever.
While hanging out at the lake with Callum, Matt asked Sean if he knew any other autism dads in our area. Now I know why. Now I know why our local CARD holds family days. Now I understand why there are autism play groups. Because not only do we as parents need moments of normalcy, so do our special needs kids. Callum is normally a happy little boy, and he loves being wherever we take him. But around perfect strangers? I’ve never seen my son so all out happy before. It’s so easy to think that, because he seems oblivious, he is oblivious. Yet, clearly, he is not. He instantly responded to those who knew how to interact with him. He got a little taste of normal too.
And it got me thinking about how the world could be. If only those who haven’t experienced our reality for a little while could. If people were educated about autism in their schools, churches, and communities. If all of our sons and daughters could be brought out to join the world with no fear of being stared at or feared. If autism awareness/acceptance became normal rather than some idealistic dream.
“You may say I’m a dreamer. But I’m not the only one.”
You might also like:
“Dear Friend Whom I Haven’t Seen Much of Lately”