What is ‘typical’ anyway?

I always find it so amusing when speaking with someone and after telling them that Jack was born with Down syndrome, the first reaction of the person is: “Oh I just love people with Downs, they’re so sweet!”

I silently sigh, and then say: “yes, my son can be very sweet, but he can also be a royal pain in the ass sometimes too”, and then wait for that person’s reaction of shock and surprise.

Why the shock and surprise?

It could be that I am so blunt with my response, but I believe it’s more because of the stigma associated with the label. What I have seen is the stigma supports the myth that persons with Down syndrome don’t get scared, upset, fight, or get annoyed. That they don’t experience a wide range of emotions but are totally complacent and happy all the time.

One morning when Jack was 12 years old, and while I was at work, I received a phone call from Jack’s teacher asking that I come pick him up as he got into a fight at school with another student. Okay, I will admit I was surprised with that call, I have never seen or heard of him being aggressive towards anyone before.

When I arrived at school, I got the details of what had happened. He had been sitting alone on a couch during break, and another student sat beside him, wanting to share with Jack the book he was reading. A very nice gesture. Except Jack was not interested and said no. When the other student became more insistent about sharing, Jack took the book from his hand and threw it at his head.

He had gotten angry. He had said no, and because he was not listened to, said no in a way that would be heard. I think to him, throwing the book was his way of trying to get his message across. I saw this as his attempt to set boundaries and teach people that he wants to be treated with respect, to be listened to and heard the first time.

I have watched him endure medical tests that terrified him. He would courageously push himself through and at the end loudly expel “thank goodness!”, expressing how relieved he was that it was over.

Or the time his cat was sitting on his lap, and he was singing along to “What Does the Fox Say” (by Ylvis), moving the cat’s front paws in time with his ad-libbing “meow meow meow meow meow …” to the song and then laughing hysterically, unable to continue, because he found himself so hilarious.

And last example:  the many days when he’s repeated the same story several times in a two-hour period, even after I tried to re-direct his attention to something else. He wanted to talk about that story, even if I didn’t feel like listening to it anymore.

My point is, yes Jack can be sweet, loving, easy-going and kind. But he is also courageous, has a temper at times, and single-minded when he wants to be (to name a few emotions).

He is his own person, with his own thoughts and feelings, just like everyone else around him. And just like everyone else, he needs to be taught not only how to recognize what he is feeling, but also the language to use so that he can express himself to the best of his ability.

Most importantly though, he needs to be given the space to do so.

So, I like to think he’s pretty typical, after all.