Tuesday, October 20, 2015

'If you see us on the bus:' The family behind the commotion

By Susan Cosgrove

If you see us on the bus, I guarantee you’ll hear us too. You’ll want to look up from your phone or book or newspaper and watch the activity.

Because the fact is that we are a commotion—everywhere and anywhere we go. I probably look an awful lot like I’m okay with that, but sometimes my vulnerability is hard to hide. If you look a little closer you’ll understand why.

If you watch us, you can tell that I’m the mom. In fact, I’m a single mom to three very special kids. The big, noisy man-child is Liam. He’s 12 and has autism; he’s barging his way into adolescence at an awkwardly astounding pace that scares me, and confuses his delicate sense of self.

He’s the one who gets the funny looks because he loves to sing “The Wheels on the Bus,” ask the same questions over and over, and tell anyone who will listen why the Autobots can’t be friends with the Decepticons.

Liam understands very well that he is autistic and is often angry about that.

If you see him on a good day you might just turn the volume on your music a little louder and tune him out. But if you see him on a bad day, you may hit pause and watch. You may even chat with your fellow passengers about the big boy who’s crying because he forgot his iPad at home, or growling at a stranger who accidently bumped into him.

If you pass us in the aisle, you’ll wonder why I brought a big, bulky stroller that’s not at all appropriate for public transit. I may give you an apologetic look as you squeeze by.

Phoenix, my toddler, is the reason I take it everywhere. Phoenix is two, and, just like his big brother, he has autism. He is smart and cute and generally overwhelmed by the outside world.

You may hear him recite the bus number or even read some words from the signs and buttons on the bus. You’ll probably want to smile at him and maybe even try to touch his blond curls. But if you do, you’ll understand why I drag a great, big stroller wherever I go.

Chances are he’ll react to you with fear, screaming and banging his head repeatedly on the headrest of his stroller. Phoenix's habit of self-injury when he's overwhelmed is probably the hardest thing I've ever dealt with as a parent.

I will smile at you and let you know that you’ve done nothing wrong, but he has autism and it’s really best if you leave him alone. My hand will remain close to his sweet head, as a barrier between himself and his instinct for self-harm.

If you sit back and listen, without touching Phoenix, you may hear him say and do some pretty extraordinary things. And he probably won’t notice if you smile at me to let me know that you can see he’s kind of awesome (I wholeheartedly agree).

If you watch my family ride the bus, you’ll see how exciting life can be.

You may notice Kaya, their bright, eccentric 10-year-old sister. She’s the one with the funky haircut and metallic pink Doc Martins. Kaya is the middle child and the only one who doesn’t have autism. She does have a diagnosis that includes being gifted and having ADHD and a learning disability. When she grows up she wants to be a labour and delivery nurse or open a drag queen hair and esthetics salon. Either one is fine with me.

On the bus, Kaya’s probably chatting at a rapid pace, telling anyone who will listen about Minecraft and music.

But if we’re having a bad day, you may get a chance to see her as a young caregiver in action. How easily she forgets that she is 10, and slips into the role of helping me help the boys through our commute. She may be reading the toddler a book, or offering Liam her phone to play with in the hopes that he’ll settle down.

In her eyes you will see that she understands why her brothers draw so much attention and how much she loves and protects them. What you may not see is how many of the normal things in life she has sacrificed for her brothers and me, how often she ends up playing the caregiving role, and how graciously she accepts it.

If you watch how I interact with them, you may think that I look calm. That's because my demeanour can have an impact on the success or failure of our trip. We may be heading to the movies or to an appointment, but my goal is always just to arrive. You’ll notice how quiet I keep my voice in the hope that they will pick up on my signals and join me with some quiet of their own.

You’ll see me constantly glancing around and sending out smiles to my fellow passengers. Smiles that say “I know you’re looking at me and I understand why. I know you wanted a quiet ride, but today it won’t happen.”

By smiling I am asking you to take a moment and put yourself in my shoes. Riding the bus with these amazing kids is a journey that requires planning, and our success can be affected by our fellow travellers. And it’s not just the bus ride. Everywhere we go and everything we do is planned according to the needs of the boys. Spontaneity is not part of our lifestyle.

If you see us on the bus (or at the store, in the park, at the doctor’s office), you’ll know that we are a special family. There are many ways that you can honour our unique journey. Share a smile or a story with us, let us know you understand. If a quiet commute is what you prefer, we don't mind if you politely switch seats and distance yourself from our chaos.

Just remember that although he may be different, Liam is learning to understand himself.

So if he asks you “Please don’t touch me/talk to me/laugh at me because I’m autistic,” please respect that. Self-advocacy is a skill that he’s working hard to learn and I’ve taught him that if he’s honest with people, they’ll respect his difference. On a good day he may ask or tell you something a few times. Please feel free to chat with him. You may learn something new about the world.

If I see you on the bus and I can tell that your journey is like mine, that maybe we are travelling the same path, I promise I will smile. I will send you vibes of understanding, and just maybe, if our little ones are having a good day, we can even have a chat.

If I see you on the bus I promise to respect your journey, whatever that may be.

Susan Cosgrove is a family leader on Holland Bloorview's Research Family Engagement Committee.


Wonderful post. I cannot imagine what my life would have been like if I had to take my oldest on public transit. I'm not sure either of us would have survived. I like how you admitted to it being overwhelming but explained why it is the way it is and ask people on the bus to be compassionate

Thank you for sharing. Your love for your delightful bunch of kiddos shows through your writing, while you were not afraid to be honest about the tough points.

Our oldest is medically fragile, and it really helped when he was little to have a sign (ordered online) on his stroller asking people not to touch. It was such a big help that we kept the sign for use when his NT little brother was born. Maybe this could help on your toddler's stroller?

Your kids sound pretty cool! They must have a great mama who accepts them the way they are and helps others to do the same!

What an amazing piece of writing from an amazing mom! You do an excellent job managing the complex needs of all your children and still seeing them as the amazing people they are. Thanks for sharing your point of view so that we all can learn!

I'm a single father with a child on the spectrum. I know how this feels. There's day where it's not a problem then there's days I can't wait to get off the bus because people are looking. She's 10 but still loves wheels on the bus. She looks 10 but still very toddler like. I have encounter other with disabilities on the bus and I love interacting with them. I understand it very well. I feel bad when someone who doesn't gives a look at them. Personally I feel like saying something to defend that family.

I absolutely loved this read.....I am so giving you a smile and a high five. Would love to meet you on the bus one day, even maybe hang out....thand for sharing

I bus my 2 children with multiple barriers to and from their special needs school every day. You touch my heart mama and I fully hear you each and every day. You are amazing and how can we get you and your beautiful children a car if it's feasible and possible? There is a lot of support out there for Autism-I think they would help you with 2 boys on the Spectrum. Good Luck and keep up the great attitude for your children. They are lucky to have you.