My son Samuel was diagnosed with autism at 28 months old. He was mostly non-verbal, except for when he scripted his favorite movie lines or spelled out letters he saw on signs. He had no meaningful communication and he screamed a lot. He repeatedly banged his head on the floor when he had meltdowns. He slowly cut back on the foods he willingly ate until eventually, he only ate goldfish and applesauce. He screamed in people’s faces when they greeted him at church. He had very little eye contact. He didn’t follow simple directions or listen to me when I told him to “come here.” He lined up his toys and would scream if they fell over or if he could not get them to stand exactly where he wanted them.
Sam is nine years old now. He is mainstreamed into his 4th grade class at school. He just graduated out of group speech therapy. He is very verbal. Sometimes, a little too verbal. He has meaningful communication. He can tell me what he wants and he can use manners to do it (though whether or not he uses them is a different issue altogether.) He uses sarcasm and tells jokes. He yells at his brothers and tries to tell them what to do. He can maintain eye contact for longer than two seconds. He is mostly able to respond appropriately to people when they greet him at church – at least he doesn’t scream in their faces anymore. He eats just about every fruit known to man and has a broader palate than his 7-yr old brother who is not on the spectrum, but still only has three foods he willingly eats. He follows simple directions and obeys me about as often as my typical 11-yr old son. He is now what most people would consider “high functioning” on the autism spectrum. He has come so far.
Yet, sometimes I actually feel guilty about his progress.
I have friends who have gone through the same therapy programs Samuel went through; some of them even had the same therapy longer than he did. But their kids are still non-verbal with zero eye contact. They still require 24/7 supervision and some are still in isolated special-ed classes at school.
A few days ago, I was heading to Capitol Hill to lobby for Autism Speaks’ Light It Up Blue Initiative. When I arrived at the metro station, I saw who I assumed were a father and son standing together. The young man, probably in his early 20’s, was excitedly flapping his hands and toe-walking. After loading my metro card, I looked over and caught the father’s eye. I smiled, and then I looked at his son and smiled bigger. Then I felt weird for looking and smiling so much, so I walked over to chat. I awkwardly explained that I didn’t mean to stare, but that I also had a son with autism. He confirmed that his son was indeed autistic and introduced me to him. He told me he was non-verbal, but that he understood everything that he heard. I shook his son’s hand and said hello as he took all of the DC metro maps and brochures out of the holders and handed them to his father. He explained it was his son’s job to refill the brochures at the metro station. He asked me about my son – how old he was, about his school, and asked if he was verbal, etc, trying to determine his level of functionality. As I gave him Sam’s stats, so to speak, I suddenly felt myself feeling embarrassed to report that he was verbal and mainstreamed in school. He was very kind and responded excitedly, “That’s so great!” I nodded, complimented his son on his job and that it was nice to meet them as we exchanged good-bye’s before heading up the escalator to the train.
I know that the last thing we special-needs parents want is for people to feel sorry for our children and their challenges. That’s what we’re trying to move away from with all the awareness efforts for various disabilities. We all love our children and we delight in their abilities, regardless of how limited they may be. Special-needs parents have a certain unspoken understanding between each other when we recognize each other in public, even as strangers. We smile because we know a little bit about the life that mom or dad is living with their child who exhibits similar behaviors our own children have shown. We smile because we secretly rejoice with that family who’s adult son has a job refilling brochures at the metro station. We give a nod of empathy if we see a child have a meltdown in aisle 7 of the grocery store because we get it.
Still, somehow, when asked to describe my special-needs child’s abilities to a father with a special-needs son who is non-verbal, despite his wide smile and dedication to his job, I felt bad. I don’t know Sam’s future. I don’t know what kind of job he’ll be able to get and/or hold, with or without me literally by his side as he works. But Sam has abilities this sweet young man does not – and may never have – and I felt guilty because of it. And then I felt guilty for feeling guilty!
I think sometimes we feel as if parenting a special-needs child automatically entered us into a competition with each other for “who has the harder life” in which none of us want to participate. And the winner of the competition is whoever struggles the most. But who judges that? So without a judge, and without standards to measure struggles, we end up in a constant mental judgement of sorts, by which we measure the challenges we face in our own life and compare them to the challenges of those around us. So if your child is doing well, according to how he/she is perceived by others, you are actually losing. Except once again, we go against our own awareness efforts because our judgements are based on what we see. And we all know that’s against the rules.
No one can win a competition that doesn’t exist.
I don’t think any of us want to be in this competition. None of us want to feel guilty for the progress our children have made, or the abilities they now have that are either gifted to them by the grace of God or earned through tearful, tireless hours – even years – of therapy. Each of us, and each of our children, face our own challenges. Those challenges are no less valid than anyone else’s. They are different, but not less. They say to understand a person’s life, “walk a mile in his shoes.” On the special-needs journey, we are all wearing shoes. But the shoes we all wear differ from one another. Some of us are even wearing shoes that don’t match. And that’s okay.
Because of the shoes we wear, we can understand how much work it took for a child to get where he is today because we have done the same hard work ourselves. We know all about the autism spectrum, which means all kids are not necessarily going to function in the same ways despite experiencing the same treatment. Maybe your child did not progress as much or as quickly as other kids, but it does not negate the progress they have made in other areas; nor does it devalue them in any way just because they can’t do the same things that another special-needs child can.
I love the title of Stephanie Hubach’s book, “Same Lake, Different Boat.” Using the same metaphor to apply to all special-needs families, we are all in the same lake, but different boats. Some of us have canoes with oars, and others have sails on our boats. But in the end, it’s not about “better” or “worse”, just different. No one is “less.” No one is “more.” No one can win a competition that doesn’t exist. We all have equal value in the eyes of our Creator, who has created us all differently. And regardless of the abilities of any person with special-needs, we can all rejoice in those abilities… together, mismatched shoes and all.
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