By Christine Denise
Autism Mom and Contributing Writer for As You Are, a virtual clinic dramatically increasing access to early autism diagnostic services through the use of exclusively telehealth appointments
Before I became the parent of a child with autism and other special needs, I had a deep admiration for parents of special needs children.
And, I still do.
Now, however, many of the cliches I used to use when talking to them have taken on a whole different meaning to me, and I see why some of them can be harmful.
Someone trying to make it into something positive – especially when they haven’t experienced it themselves – is a negative.
Here are some of the most common phrases people – including family members – have said to me that now make me cringe.
And here are some ideas on what to say instead.
You’re only given as much as you can handle.
But what if you’re at a point where you don’t feel like you are handling it?
Or you aren’t handling it particularly well at that moment?
If I was given this because I can handle it and I’m not handling it, it can send us into some very dark thoughts.
You never know how someone is coping with the diagnosis when you say this to them.
And it often changes throughout someone’s journey parenting a special needs child.
Telling someone I was given this so we should be able to handle it also trivializes how much there actually is to handle.
It also creates a sense of isolation, like we should just handle it all on our own without any of the type of help parents with neurotypical kiddos get from other parents or family members.
And others are still on their journey to wrap their minds around a diagnosis they never saw coming and struggle to handle.
Instead, offer ways to help us handle the diagnosis, whether that be through offering to watch our special needs children so we can have a break without having to pay for it, or perhaps offering to drive our children to a therapy appointment just like you would offer a typical child a ride to baseball practice.
Just like you offer to help parents of typical kids with carpooling or babysitting or “handling” parenthood in general, we need help, too.
Special children are born to special people.
Many parents of special needs children – especially mothers – already search for a reason why their child was born with special needs.
And oftentimes for mothers, that search turns inward because we are the ones who carried our child in our bodies. It was our responsibility to keep them safe from harm while they grew inside of us. And some of us will always struggle with wondering whether the diagnosis is somehow our fault.
I know I do.
For years, I believed that an anti-anxiety prescription that I was taking before I knew I was pregnant led to my child’s genetic disorder and autism diagnosis.
Every doctor I have ever talked to about it tells me there is absolutely no scientific research that shows a connection between the two.
Still, to this day, nine years later, I still struggle with believing them.
The truth is, many of us don’t feel special because our child was born with special needs.
Instead, tell parents how much you admire their strength even if they don’t feel like they’re strong because you know a diagnosis is a lot to handle. And, as always, offer to be present for them. Offer to listen if they need someone to talk to.
A lot of times the last thing we are looking for is someone who is not in our situation to try to offer advice or some type of positive thought. What we’re looking for is someone to just acknowledge that we are going through a lot and to let us know you will be there for us.
It also means a lot to hear someone acknowledge their ignorance about this topic and, again, just offer to be there for us.
Everything happens for a reason.
Yes, we know, and we will spend the rest of our lives trying to figure out why. We don’t need someone who is not in this situation reminding us of that.
A lot of that soul searching we will do searching for why it happened will include feelings of anger, guilt and wondering if the diagnosis is, again, somehow our fault.
Many parents of special needs children take a long time just to arrive at accepting the diagnosis.
Some families believe raising a child with autism gives them a reason to look at life a little differently. And that’s great for them. But they came to that conclusion on their own – not because someone else told them to.
Instead, acknowledge how hard it must be not to know the answers to all of the questions we have about why our child was born with autism. That opens the door to allow us to once again confide in you if we need someone to listen.
Do you have questions about your child’s development? The team at As You Are provides useful autism screening and diagnostic evaluations for kids 16 months to 10 years old via telehealth appointments.
Disclaimer: I am not a medical professional. This is a sponsored blog post, but all opinions are my own.
