It seems today’s society thrives on labeling things and categorizing them into neat little statistics. Millions upon millions (probably into the billions) of dollars are spent every year completing surveys on just about everything under the sun – from how many people prefer summer to winter. How many people eat fast food compared to who are vegan. From how many families are now divorced to how many couples skip marriage completely. And of course there are statistics on every disorder and medical condition under the sun.
My children are part of the statistics world. Both of them have disorders that have been studied for prevalence. My son is 1 in 20. He has Sensory Processing Disorder, which it is estimated that 1 in 20 children have, to varying degrees. But what does that really tell you? It tells you nothing about my son, or his struggles, or his triumphs.
For example, 1 in 20 does not tell you that he loves birds, drawing, that he loves to read, that he sings while he’s using the bathroom, or that he thinks farts are one of the most hilarious things on earth. It does not tell you that one of my son’s struggles is with balance. Granted, this is far from his most significant struggle, but this issue with balance has in turn has made things like learning to skate, to ride a bike, and to swim, very difficult for him. Things that almost all his other friends have no problem doing.
Thomas has been in private swim-therapy lessons for two and a half years now. When he first started at five, he could only wade a little way into the water, could not put his face in, get his hair wet, or stand even the smallest of splashing. Last summer, even at seven years old – when all his friends were jumping in the pool, swimming, splashing and having fun, he was struggling to walk in water that went further up than his waist. He would not even let me carry him around the shallow end of the pool with a life-jacket on. Pushing the issue would result in screaming, tears and sheer panic. And so, last week during his swimming lessons when he swam the entire length of the pool with a life-jacket on, clear out into the deep end – I was jumping up and down, cheering him on, with tears of pride in my eyes. For 1 in 20 does not begin to tell you what a huge accomplishment that was for him.
Our daughter Ashley is technically two statistics. She is 1 in 100 – the number of children that will be born with a heart defect. But that doesn’t tell you that her favorite colors are pink and purple, or that she loves painting fingernails – not just hers, but anyone that she can round up. That tells you nothing about what her struggles were like that first year. What it was like to have a child on a feeding tube, what it was like to have to take your baby for blood work every single week, to be preparing yourself mentally for handing your child over for surgery that would stop their heart and carry the risk of seizure, stroke and death, among other complications. It doesn’t tell you what it means to us every time we look at her today, the picture of health, running strong and hard, scar-free.
And then there is her other statistic – 1 in 68. The number of children today that are diagnosed with Autism Spectrum Disorder. But that doesn’t tell you that Ashley loves Barbies, gymnastics and dance, keeps begging us for a pet dog, or that despite her tiny size she has a roar like a lion! And it certainly tells you nothing about what her life with Autism is like.
1 in 68 doesn’t tell you that she is just shy of five yet still in Pull-Ups. That statistic doesn’t tell you that 90% of children with Autism have bowel issues, including chronic constipation. It doesn’t tell you that she is on medication that leaves her soiling herself. It doesn’t tell you that this chronic constipation also leaves her with urinary incontinence. Or how badly she hates having to be in a Pull-Up, how she apologizes when she messes herself, how we try and console her, telling her that it’s something she can’t control and it’s not her fault. It doesn’t tell you the frustration that I feel and bite back, when someone makes a comment or gives me a “look” when they see that she is still in Pull-Ups, judging us without knowing.
1 in 68 doesn’t tell you that despite having an excellent vocabulary and expressive language, Ashley cannot carry a conversation with peers. She will often ignore what someone has said, or will reply with something completely off-topic. She does not understand the give and take in conversations, the pragmatics of speech, and she does not understand figurative language at all. Anything you say to Ashley is taken completely literally. This often has her getting upset at something that was meant to be funny.
Nor does it tell you of the struggles she has with peers and playing. It doesn’t tell you the hurt I feel when I see her looking at her dance class photo – “It’s all my friends! They’re my friends!” And yet, not one of those “friends” will speak to her. How admitting that out loud at a recent Autism support group meeting made me cry. It doesn’t tell you how my heart ached the day that she told me how a peer had made fun of her, as she was struggling with a fixation.
It doesn’t tell you how I sometimes dread play dates. She struggles playing with children her own age. She will stay with them for a few minutes, but then often just wanders off, leaving them completely on their own. How my heart aches when that child comes downstairs saying, “Why won’t Ashley play with me?” It doesn’t tell you how I worry about her social skills and what they will be like as she gets older.
1 in 68 doesn’t tell you about her intense need for control. What others see likely as “bratty” behavior, is her struggling to have some sense of control over a world that is completely out of her control. It doesn’t tell about her extreme independence, how she struggles asking for help, how she prefers to do things for herself – even sometimes at the risk of hurting herself or getting into trouble with us. It doesn’t tell how when life just gets too overwhelming, too stimulating, too tiring – she melts down. How she will scream, lash out with “I hate you!”, stomp up the stairs, slam doors, perhaps throw things across her room, and often cry herself to sleep.
And we let her – for when she has reached this point, no amount of talking, reasoning or discipline is going to make it better. She needs to release her own overwhelming feelings, and as long as she is not hurting anyone, we let her work it out. For when she reaches this point – our own attempts at comfort, often make it worse. 1 in 68 doesn’t tell you how it feels to be unable to comfort your child.
It doesn’t tell you of her sensory issues – how this same child that has an extremely high pain tolerance, can scream and cry when I try and brush her hair. It doesn’t tell how she struggles with transitions and fixations. She likes to know what is going to happen and when – and heaven help you if that changes. Once she has something in her mind, that’s it. She will repeat it over and over again until it happens. If something happens once – such as getting a Slushie after swimming lessons, she automatically thinks that means it will happen every time, and then gets upset when it doesn’t. It doesn’t tell how she gets overwhelmed in public spaces, and this results in a need to run or move almost non-stop. Or that I know we’re getting judgmental looks for our “undisciplined” child, from those who don’t know her or her struggles and needs.
1 in 68 doesn’t tell you how hard we work on all these issues. For at the end of the day, we will not allow her diagnosis to be an excuse for doing whatever she wants, when she wants. Negative actions have consequences, though they are generally dealt with later, once the storm has passed. And they often need to be worked on in ways other than what most parents would use. Sadly, Autism is often misunderstood by others because it is an invisible disorder – all people see are the behaviors, and not the disorder behind them.
There’s so much that 1 in 68 will not tell you. It will never begin to touch on the struggles of Autism. Nor, it’s joys. And don’t be fooled – there are so many joys hidden in Autism. For, as much as Ashley struggles with peers, she plays well with older children and adults. Even with peers, she is capable of joining in on group games like tag, chase – games where you do not need a lot of one-on-one communication. She loves to run around and play with children, and her laughter will sound across the yard. And when she laughs, she laughs with her whole body – it is vibrant and infectious. You cannot be around Ashley when she is laughing, and not smile or laugh, too.
Some of the things that are frustrating for us – like her determination to get into everything, are also some of the same things that bring us much laughter and even pride. For example, she would not stay out of the pantry. She would constantly go in and steal snacks no matter what the consequence. So we installed a chain latch up high. So, she figured out how to grab a broom and use that to pop the chain out. We then locked the broom in the pantry. She then went to the basement, got the mop and used the mop to pop the chain. As frustrating at that was – it only goes to show her excellent problem solving abilities, and the humor of the situation was not lost on us!
Every day Ashley leaves her mark on the house – and I don’t just mean through messes. She likes to arrange things, and while to us there is no rhyme or reason to what she does, I know somewhere in her mind, it makes sense. Like leaving a hat hanging off a wall light switch. Or, using my seamstress tape to tie the light-switch to the doorknob. Or arranging a toy to sit just so on the entertainment center. These little quirks always bring a smile to our face, as we marvel at her creativity, or laugh as we ponder, “What was she thinking?”
As a toddler, Ashley was very much content to be in her own world, alone. She did not often seek out our engagement. Recently Ashley took to grabbing our chin and pulling our face around to look at something. It was her way of getting us to look at what she was looking at, her way of reaching out to us saying, “This is something I find interesting, share this with me.” Though we have since taught her to ask, I admit, I did, and still take, pleasure in the feel of her hand on my face. It’s the feeling of connection, something I have learned not to take for-granted.
The thing about statistics is that life is so much more than a number. And it’s all these things that the number will never tell, that make life what it is – perhaps full of struggles, yes, but also full of learning and triumphs. For this statistical life teaches you to learn to appreciate the small moments, the simple triumphs, to celebrate the minute moments. What’s more, you realize that it’s all these small moments that most take for granted, that are really the big moments that you’ll remember forever.