Special Needs Mom: Diagnoses & Labels

Labels are a controversial topic at best. There’s all these different opinions on what language to use and even on what order to use that language in. Do we use “people first” language when referring to someone with special needs? Do we even say “special needs” or just use the word Autism? What do we say if we are speaking about several individuals with disabilities who don’t all happen to have the same disability? Are we going to offend someone or seem insensitive?

These are all totally valid questions and the hard part is, there is no easy answer.

Each person has their own experiences in the world that shape how they view things and the opinions they form on different topics. I know individuals who are on the spectrum and use the the verbiage autism, autistic person, and person with autism interchangeably. I’ve also read articles and watched videos where people are highly offended when their child is referred to by their diagnosis first. Often they argue that it makes them feel like the diagnosis is more important than the person or that it is defining the person. There are even people who don’t like the use of the diagnosis to describe their child at all because, “they are just a child like any other child”. I totally get where they are coming from and it makes some sense to me but it isn’t always practical.

I mean, I don’t always walk around labeling my children with characteristics that describe them, but I do sometimes talk about their autism and that would be kind of hard to do if I wasn’t allowed to even mention the word. This article itself would be chock full of “you know what's and “that thing's. Where’s the sense in that? How does not actually saying the word, but hinting around to it make it any less offensive or real? There is so much differing information out there on this topic that I don’t even know what exactly I’m supposed to say in regards to my own children. If they were verbal I would just ask them and what they prefered would be what I would use and that would be the end of it, but they aren’t, so I can’t. I’m sure one day that will change, but for now I find myself wondering.

The part of me that sees so much more in my children than their diagnoses wants to lean toward the crowd that doesn’t use labels at all, but in my personal experience I’ve often found it helpful.

For example, a few months ago we were at Turtle Back Zoo getting food in the cafeteria. Rory is obsessed with french fries and often won't eat anything else if there is even one fry present. So I decided not to get any hoping that she would eat a little healthier and if she finished I’d get back in line and get the fries as a reward. My plan was working and we were all enjoying a semi-calm (as calm as you can get with a two and four year old) meal. My son had yogurt and spilled a big gob into his lap and all over the strap of the communal highchair I had him strapped into. So, I fished through my bag for a baby wipe and started cleaning it up. Next thing I know, Rory darts out of her seat and steals a french fry off of someone's tray who hadn’t even finished paying for them yet. Of course I was mortified as I am multiple times a day, but the interesting part of this story isn’t that my four year old is quick and obsessed with fries. It’s what happened next.

The middle aged couple who had just been the victims of this deep fried potato theft gave a look that was a mix of, “Hey!” and “Control your kid, lady!”. Without thinking I blurted out, “I’m sorry. She’s autistic.” Immediately, they changed from judging and angry to understanding and supportive, even offering to give her more of their food. Although they may have taken it too far by trying to reward my little pickpocket in training for her not so great behavior, the point is that having that label, that word to wrap their minds around, helped them to understand what was happening. This wasn’t just a naughty child (although it was naughty and I was not happy with her for doing it) who was being sneaky and knew they were taking what wasn’t theirs. This was a child who didn’t quite understand that those fries weren’t up for grabs, but in fact belonged to someone else that was very much looking forward to enjoying them the same way she enjoys them.

I wish I could say that I had all the right answers to this. I don’t, but hopefully you can see why I see both sides of the argument.

Megan is a stay at home mom of two au-some kids & the co-director of the Hoboken Special Needs Parents Group. Her daughter Aurora (4) attends the Pre-K ABA program at Wallace Elementary. Her son Clark is 2 and a half and is receiving services through early intervention. Both children are extremely active and always keep Megan on her toes! She and her husband moved to Hoboken 2 years ago and were blown away by the help they received from the Hoboken School District. You can also find Megan in her role as the children’s ministry leader at Hoboken Grace Church.

#specialneeds #childrenwithspecialneeds #specialneedsmom #specialneedsparent #autism #diagnosis #labels