“You are so amazing ! I can’t believe how patient you are with your son. I couldn’t do what you do.”
I can’t tell you how many times I have heard that line, or something very similar.
When you are a parent of a special needs child this is a common sentiment expressed by well-meaning onlookers.
I am not sure why people feel the need to compliment me. I am guessing that they so uncomfortable with my situation that they don’t know what else to say. Or perhaps they are trying to picture themselves in the same situation, and they are so horrified at the thought that they decide they better throw me a bone?
What I want you to know is that whatever the reason – I actually find these sentiments rather annoying. I am not that special.
I remember when my son was 4, a social worker brought me a story. It was an analogy about how parenting my autistic son would be more like a trip to Holland while all “normal” parents were going on a trip to Italy. I know it was well-intended, but it was designed to emphasize that not only was my child ‘different’, but that I too, as a parent, would be segregated. I want to tell you that after 14 years of parenting Anson, and his nuero-typical sister I have come to the conclusion that this is all rubbish.
In my opinion all parents can be put into a single category: Parents. Sure, our experiences are different, our children are difference, we are different, but we are all parents! I prefer to look at the ways we are similar rather then having others marginalizing my parental experience along with my child. I guess you could say that I am advocating for inclusive parenting.
I have been parenting a special needs child for 12 years. Before that I just thought I had a ‘regular’ child like everyone else. I made up stories about what his life might be like, or what he might do when he was older…. his diagnosis crushed most of my fabricated hopes for him, but is that so unique? Are there not other parents who have been disappointed over a child not living up to expectations? Children who end up in jail rather than university, or pregnant at 16 rather than class valedictorian? Or even just fail to “make the team”? Being a disappointed as a parent is just what happens. The way I see it I just got my major disappointment with Anson over early is all.
My son once had a teacher who adored him, and worked hard with him. In contrast, his next teacher was not a fan. What the one teacher had described as free-thinking, his new teacher would describe as defiant. One thought he was humorous while the other would say he was disruptive. In six months, his school progress card transformed into a badness report. Our son went from a child of promise to a behavioural problem. This prompted me to write letters, go to meetings, etc. in an attempt to partner with the school to find a solution. At the end of the day we endured it for 2 years, and then moved on. Is that so different? I think most people have a few run-ins with teachers now and then. It didn’t feel any different in the principal’s office just cause I was a “special” mom. School is for everyone, and so everyone takes some hits now and then.
Regression to the Mean
I find it interesting that when your child is little, a smile will produce a rousing applause, and praise. It doesn’t take long before more is expected however. Even as a baby, our kids are almost immediately measured so we can see how they compare to other children. Anson was 100th percentile for height and weight as a baby. Pretty much the only time he exceeded any paediatric measurement scale. (Nice job bubbly!)
Are we are not all always looking for “specialness” in our kids? I’ve never meet a parent bragging about how average their kid was – not once.
Even when our son was diagnosed with Autism I was looking to see if maybe he was a “special’ case, or better than most with this condition. It is always tough to see your child move towards the median – to find out they are just like everyone else (kind of like their parents). It s not very satisfying, but I am confident it is a common parental experience.
Anson makes me crazy.
But I’d be lying if I said my other child does not cause this reaction at times. Plenty of times actually….
Anson didn’t talk for a long time. He didn’t make eye contact or react to much of anything when he was little. Finally he responded to a question: “What does a duck say?” He replied, “la la la”. Now maybe that is not the conventional answer, but for us it was momentous! It meant Anson could talk! He was answering a question so he was actually interacting with us – so amazing!
There is nothing more satisfying then seeing your child achieve- however small. I believe that feeling of joy is another parental universal.
No Stone Unturned
No matter where you are with your kids, they are still your kids. You do what you can to stack the deck in their favour. With Anson some of our pursuits to help him have turned out to be a wash. Sometimes we get discouraged, but we carry on. We have hope. We keep looking. We take it one day at a time. Doesn’t everybody?!
So what do you think? Can we be inclusive in parenting? Can we try to stop looking for how a parent’s struggle or success in child-raising is so different from our own?
Instead, let’s be reassured that we are all on the same journey – the same trip. When talking to a parent with a unique situation instead of asking ‘how do you do it?’ how about just asking them to share their experiences, or ask them to share what have they learned.
Let’s try not to alienate parents by either putting them on a pedestal, or dismissing them to the sidelines when they fail to meet our expectations.
Let’s be colleagues. Let’s be peers. Let’s be friends. After all, as parents, don’t we need all the help we can get!!
There is beauty in the struggle. – Glass Castle