Let's face it, parenting is one of the hardest jobs a person could ever do, and it's hard enough to do it without the peanut gallery gawking at you while you fumble your way through infancy, toddlerhood, adolesence, and the dreaded teen years.
Parents often feel so alone, adrift with their children in a place where no one understands them, and there are times when it would be nice to have some help.
There were times when my daughter was a baby that I begged my own mother for help understanding my strange little creature, pleaded for a handbook that came with pregnancy but was inadequate for after the birth.
But then, there are times when we don't feel the need for help, and we definitely don't want "help" from others fostered upon us.
When we think we're doing well and someone offers their help or unsolicited advice, it can feel very condescending, and even hurtful, but in my humble opinion, I think it's a little worse when you're the parent of a child with special needs.
As the parent to a teen daughter with a number of special needs, I have been around the block and I know how often people make comments or give suggestions on how to raise or teach my daughter, but there are some lines that just should not be crossed, and it seems that the general public doesn’t know where that line resides.
Don’t worry, I’ll tell you where:
You cross the line the moment you open your mouth.
You see, we don’t need and we especially don’t want any unsolicited advice, but there are a few things in particular you should avoid asking or saying to a parent of a special needs child, and in no particular order, here they are:
“Your child doesn’t look disabled.”
Right. And you don’t look like you have any idea what you’re talking about.
My child doesn’t look disabled. She isn’t in a wheelchair, she doesn’t need to be held by the hand everywhere we go, she doesn’t shuffle around, or stare at people, or drool — she doesn’t look anything like your typical idea of what a disabled person looks like.
When I try to talk to people about our struggles with her disabilities, I have seen the skeptical look in people’s eyes as they wonder whether there is anything wrong with her at all.
People have even said to me, “she doesn’t seem disabled, she’s just different,”and they don’t consider where those differences come from.
The worst part of hearing this as a parent is the stab to the gut you get when you feel like people don’t believe you that your child is disabled at all.
As if people think you are making up your child's disability for your own attention and sympathy.
As if you enjoy telling people your child is disabled because it isn’t obvious.
“Well, she’s not that disabled, at least she doesn’t have —"
If you’ve been to therapy I’m sure you’ve been told that you should never compare yourself to others.
You need to remember that everyone’s situation and everyone’s pain is different, and just because it doesn’t sound like this person is having as hard of a time as you are, it doesn’t mean that their pain and struggles aren’t real and valid.
When people tell me things like ‘at least she doesn’t have Down Syndrome’ or ‘at least she is verbal’ not only does it invalidate what we are going through, but it’s sort of insulting to the other parties, isn’t it?
The parent of a disabled child thinks enough about the level of their disability, they don’t need to be reminded by other people that it could be better or worse.
It is what it is, and it’s hard for us.
“She’s young, she’ll probably grow out of it.”
Children don’t grow out of Autism. You don’t grow out of being intellectually disabled. You don’t grow out of having Down Syndrome, you don’t grow out of any of these developmental disabilities that so many people want to write off as children being slow or lazy.
These disabilities are for life, and as our children grow and change, the way the disabilities present themselves may change as well, but they are never going to go away, and they are never going to ‘grow out’ of them.
To a parent with a special needs child, this is one of the hardest things to come to terms with - that disability is forever, that their child will not be typical.
I remember a day standing in line at a store, my toddler sitting in the front of the cart, flapping her arms and laughing excitedly, because flapping her arms is what she does when she gets excited.
I wasn't embarrassed by it, I was used to the behavior, and I didn't encourage my daughter to stop her stimming.
But, behind me, a woman just bluntly said:
"Don't worry, she'll probably grow out of that."
Please don’t offer this comment to a parent — because you can’t just look at five minutes of a child’s behavior and know that it’s something they will or will not grow out of.
Saying so reminds some of us that there is actually no hope for change or improvement, so we would rather not consider it any more than we have to.
When in doubt, don’t make any unsolicited comments to special needs parents.
Whether or not you think your comment might be helpful, the truth is we’ve probably heard it before, will hear it again, and never wanted to hear it in the first place.
Before offering "help" or an unsolicited comment, try putting yourself in our shoes and thinking of how it sort of makes us feel judged by a stranger, belittles our parenting efforts, and even makes us question our sanity at times.
Keep in mind that we are living with special needs every day, and we take very good care of our children. We seek out professional help, counseling, school accommodations, advocacy, and more support than you can imagine, so the last thing we need is “help” from people who have no idea what they’re talking about.