The A-Word

I tried to sit down and write a blog on April 2 to make note of World Autism Awareness Day, but life happened and the blog didn’t. Since the entire month of April is Autism Awareness Month I figured I had some time. I may even sneak another one this month if I can.

One of the many things that’s been on my mind to write about in more detail is what brought us to seek an evaluation for Andreas in the first place. I talk to lots of other moms who fret and worry about developmental milestones and whether or not their toddlers (it’s usually toddlers) are meeting them. Sometimes they bring up autism in a hushed kind of way like they might be saying a forbidden word; a new a-word if you will. Nobody wants to be the paranoid mom who is seeing problems that don’t exist. On the other hand, we’re all so hyper aware of autism these days that nobody wants to be the mom who missed it entirely either.

I hope that I can maybe ease some minds a little by saying that if it’s one or two things you’re worried about, your kid is probably okay. I mean, I’m not a doctor so don’t take my word for it. When I initially went to our family doctor about Andreas, I had four pages of notes written down. I wasn’t worried about some thing or other that popped up along the way.

I wondered about him when he was a baby.
I wondered about him when he was a toddler.
I wondered about him when he was a preschooler.
I wondered about him, and kept notes, and watched him carefully all the way up till the day he was diagnosed. I’ve heard that for some, autism appears out of the blue. I can’t speak to that because that was not our experience.

Our experience was our guts telling us that Andreas was something else, from the time he was born.

A lot of people will caution you against comparing your kid to his or her siblings, or their peers, because all kids develop differently. It’s good advice to keep moms from keeping score over whose kid did what first or best or whatever. Autism isn’t the only spectrum. Typical development happens on a pretty broad spectrum as well. But that aside, I’m going to give the exact opposite advice. If you are concerned, watch other peoples’ kids. Watch your own other kids. Your friends’ kids. Watch your kid and compare.

If I wasn’t doing any comparing, I wouldn’t have found it more than a little bit odd that while Mateo had learned his letters and their sounds at age 3.5 – Andreas had learned them alongside his older brother at age 19 months. When’s the last time you met a kid who was a year and a half that could identify every single letter of the alphabet and tell you their sounds? While at the same time that kid couldn’t tell you his own name or say too many other words clearly at all. At some point, comparisons have to be made. Kids learn to babble and gesture and speak and communicate and read in a certain order, whether it happens early, average, or late. Andreas was doing everything all out of order. Some things were happening ridiculously early and other things that should have happened first were happening much later.

If I wasn’t doing any comparing, I wouldn’t have found it strange that Andreas’ little brother plays with toys in a much more typical, child like way than Andreas ever has. They are 2.5 years apart and Andreas is learning pretend play from his younger brother. Andreas will line up his cars or trains, or lay on the ground and run them back and forth. If there is any dialogue involved, it’s often a word for word repetition of something he watched on tv. Olivier will make his trains talk to each other and play games and race them. I can tell which boy has been playing with what toys just by looking at how the boys leave them when they’re finished. Andreas will play with certain toys and scarcely touch the rest of them. My other boys will play with anything and everything that suits them.

If I wasn’t doing any comparing, I wouldn’t notice how other kids don’t quite know how to play with Andreas if they don’t know him well. My kids are used to Andreas and his ways. We all are. We don’t think about it. I once overheard this conversation between Andreas and another little boy his age:

Boy: You’re kind of weird.
Andreas: I know.

It was very innocent and not offensive at all. Kids are honest and that day, I have to admit, Andreas was acting decidedly strange. It’s not that kids have been mean to him much, though that has happened. It’s more that they can’t put their finger on what’s up with him. The last couple of birthday parties he went to, he spent a lot of time running around on his own. He also told a magician that his tricks aren’t real magic in front of the whole party, then walked away and went to play by himself someplace else.

During his assessments, all of them, the various tests were scored against the average for kids his own age. There is a lot of comparing going on, even if nobody says it outright. In the context of assessing a child it’s necessary and dare I say a good thing to compare.

We did a lot of comparing. It was the comparing that made me have him assessed.

So yes, do look at the milestone charts, but don’t get too worked up over them.
Do talk to your friends and watch how other kids are developing, but don’t worry about which kid is first, fastest, best, or strongest.
Do find out if you have anything to worry about, if you’re already worrying – but don’t let it take away from the joy of your child in your life.
Do talk to parents who have similar concerns or who have had children evaluated, whether they were diagnosed with anything or not. Don’t worry if your experience is different from theirs.

I got tired of people telling me not to compare Andreas to other kids, especially his siblings. But the differences, well they stand out whether you’re actively “comparing” or not. So let me be the first to give you permission to do the same. Compare. But do so with a heart of acceptance no matter what, and a desire for understanding. Do it so that you can better help your child.

Autism isn’t really a this vs. that kind of thing. It’s not eye contact vs. no eye contact. It’s not verbal vs. non-verbal. It’s not social vs. anti-social. The truth is that autism looks different in every kid with a range of triumphs and challenges. Comparing and listening to other peoples’ stories has helped very much in sorting out our own. It’s been good to say “no that doesn’t sound like Andreas” or “yes that is kind of like him.” It’s helped to clarify what we need to focus on and what we really don’t need to be worried about.

Autism is not a swear word. Nobody would think twice at having a kid’s hearing checked and getting hearing aids if they were deaf. They’d learn sign language and learn how to navigate the world a little differently and it would be perfectly okay. So it is for us with Andreas and autism. He is learning how to communicate and navigate the world somewhat differently than our other kids, and that’s okay. Comparing has helped us to let him be himself, rather than expecting him to be just like his brothers or other kids, and that is nothing but a good thing if you ask me.

copyright (c) 2013 Jenna Pelias // all rights reserved

Advertisements

2 thoughts on “The A-Word

  1. I, along with some other facebook friends just “discovered” your blog and out of the three articles I’ve read so far, I’d say 3 for 3 is a good start! I’m now a fan and looking forward to getting a chance to browse for more! Our sweet, sweet grandson is on the “A” spectrum. A lot of what you say our daughter, and son in law and we in the background have experienced. Thanks, your insight is spot on! You’ll be hearing more bravos in the future, I’m sure.

    Like

Comments Welcome & Encouraged

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s