Throwback Thursday: Post 1000

So this is here it all began…Free As Trees. Blogging. 11 years ago this month. 

  
The rest of the post.

This was my first real blog post. 11.5 years ago I met a boy who encouraged me to write my thoughts on the inter webs. Before digital cameras were the norm and photos were developed on film then scanned onto CDs, then uploaded to flicker to finally post on my blog. In the early days my words were the only photographs. I was so young! This is a little glimpse into that life before this current one. I journaled across the screen. Thoughts and ideas. Places and art. Poetry and stories. 

To commemorate my 1000th post I flashback to the early days. And the younger us. Married 9 years this upcoming Monday. 

  
Kathmandu, Nepal. We travelled on to McLeoud Ganj from there. I didn’t meet the Dalai Lama. But I was naive enough that I thought it was possible. Because then, anything was. And sometimes it still feels like it is. Especially with this guy next to me. 

Onward to the next 1000!  

Just Keep Swimming

 For the first time this summer Sebastian and Tallula had swim class without me. I watched from behind the glass upstairs, with other parents and caregivers. They took turns looking up for me to make sure that, yes, I was there. I chatted with another mom whose son was in Sebastian’s preschool and then later a mom who used to be one of the therapists on his communication team. I listened to moms of kids who likely lived nearby in the neighbourhood and only came to Bloorview for the Red Cross Swim Lessons. They talked about the level of their child’s swim abilities mostly and other things that didn’t matter to me. I usually tuned them out. 

I watched Tallula gain confidence in putting her face under water and blowing bubbles. Floating on her own and kicking independently wearing a life vest. I watched Sebastian kick across the pool, his head leaning back on his swim teacher. Sometimes he’d wear the swim ring and float on his tummy with help. His body free in the water. Moving effortlessly and making progress. I’d watch the kids swim towards each other and smile, enjoying being in the pool together. 

Tallula was sad that it was their last day to swim together. Sebastian has a pool at his new school where he will swim twice a week and Tallula will hopefully continue with lessons here once a week. Every night her favourite part of her day is when she went swimming. Even when she didn’t. 

I remember the first time Sebastian purposefully kicked his legs in the water. It was in Thompson Lake in Howell, Michigan. We were also doing HBOT sessions that summer. He was about 15 months old. It was amazing. And now he can kick all the way to the other side of the pool with someone guiding him. I remember when Tallula refused to put her face in the water and now she was blowing bubbles for 3 seconds!

Sitting up there watching my kids swim together, I was full of proud moments. Moments of pure happiness and not only did I enjoy watching them but also seeing their independence. Which is a huge thing for Sebastian who depends so much on others (and me!) so much of the time. I loved seeing Tallula’s confidence build and the risks she took were so much greater than when I did swim class with her. 

I was having a lovely conversation with one of Seb’s former therapists as we watched our kids swim and talked about end of summer plans. Then I overheard the two women next to me, ‘It’s so nice they let that disabled boy swim [here]. Look how happy he is in the water.’ I was silent and she said, ‘That was weird. I’m sorry.’ I said, ‘Yeah, considering where we are.’ We were both shocked. The women heard us though and started talking about when the hospital was built. As though to tell us they understood where we were. 

I wanted to say something back. But all I could hear was that woman saying ‘that disabled boy.’ THAT DISABLED BOY. Not, that cute boy in blue having the time of his life kicking and swimming towards his sister. Then laughing together. I couldn’t believe what I was hearing in THIS PLACE. This place which is practically our second home because we spend so much time here and we know so many families and people within these walls. This place that is OUR COMMUNITY. This pool that is warmer than any other pool in the city because it’s FOR kids with disabilities. Not so YOU can bring your kids to learn how to swim. That’s a bonus for you. You do not belong here. That’s what I wanted to say. You do not belong here with my ‘disabled boy’. 

That disabled boy. My heart broke a little. I was thankful there weren’t any other kids around to hear these women. These so very ignorant women. And you know I got stuck in the elevator with one of them and her daughter. And I had to bite my tongue so hard I thought it would bleed. Because of the kids. And you know she didn’t even know what was on the second floor of the ‘hospital’. I opened my mouth to tell her about the aquarium and the big game on the wall you can manoeuvre with your body or your wheelchair and I stopped. Because if I started there’d be no going back. 

But next time I will. 

  

On inclusion

 
I met a man this weekend at the Easter Seals Regatta that told us that having a special class for kids with intellectual disabilities in his school as a kid fundamentally changed they way he viewed people with disabilities because they were ‘included’ insomuch that they were there in the same halls as he was. 

I remember the same thing when I was a kid. I befriended a girl named Jenny when I was probably 7 or 8, close to the age Sebastian is now. She was in a wheelchair and I remember her pale skin and white blonde hair. I remembered her blue lips. Thinking back she was probably on oxygen sometimes but I don’t remember seeing it. She came to our class on special occasions and was probably in our specialist classes. I really liked talking to her. Then one day she wasn’t there anymore. No one told us why. I think I thought she died. 

I am 38 years old. Three decades ago kids with disabilities were in our schools but not in our classrooms. Today, in Toronto, they aren’t even in our schools. With the exception of 9 schools in the TDSB (out of hundreds; 451 elementary, 110 secondary) that have a classroom which I imagine is similar to the one that Jenny attended at my elementary school over 3 decades ago. 

Kids that have never met Sebastian before might stare because they have never seen a child in a wheelchair in their classroom or in their halls at school.  They might have some questions that never get answered because they will never meet kids like Sebastian during their education. They will become adults that will run companies that do not hire adults with disabilities because they don’t know how to accommodate them in the workplace. They will become adults in government positions that make decisions for people with disabilities without the knowledge or experience of anyone with a disability. 

Let’s stop pretending that the current system of segregation is ok. Let’s stop blaming it on lack of funding and remember that adults who don’t include send a message to kids that they don’t have to either. Oh, that kid with autism? He can stay home until the graduation ceremony is over. How about that child with Down’s syndrome that would do better participating as an audience member rather that in the class play. (Yes; I read that story too but can’t find it to link). Those teachers? They never had kids with disabilities in their class either. But they should know better. 

Maybe the special school will have better programs for Sebastian’s physical needs. Maybe they will better understand and implement the technology he needs to both learn and communicate. But what his sister is learning? That her brother has to go to a different school than her. A special school. Where everyone else is like her brother. And that is not ok. 

Sebastian has attended a day camp  this summer (and last) that is outdoors with a music and arts focus. It’s for ages 6-18 and it’s also integrated. Sebastian is making friends with kids of all different abilities, including some without a disability at all. At the end of the first camp session (2 weeks each session and he’s attending 2), one girl, his age, hugged him in his chair and said ‘ I wish Sebastian and I could have a play date.’ Her mom was surprised. So was I. She said, ‘Well sure, why not?’ So we exchanged emails. I don’t know if our schedules will mesh in the last two weeks of summer. But that’s not the point. I know that this girl will grow up to include others. Imagine what society looked like if every child had a similar opportunity to meet and befriend kids ‘like Sebastian’.  To laugh with him. Kick a ball with him. Play a game on the computer with him. Swim in the pool with him. Read a book with him. Ride a bike with him. Crush garlic with him!

  
That is the kind of world I want my kids to grow up in. It’s the kind of world I want all kids to experience. Adults too. And I’m not giving up. 

Father’s Day

A belated post for a man to be celebrated all year round. We love you!

Dear Papa-Daddy,

 Remember when we decided to call you Papa-daddy? Sebastian was a baby. We were living in Egypt. We were learning about how babies learn to talk. We thought maybe the ‘p’ sound might be easier for Sebastian. We were so hopeful. 

 
Remember when Tallula first called you ‘Dad’ instead of ‘daddy’? Did you think it sounded so old, like a mini-grown up? Could you believe the ease in which the words rolled off her tongue and out of her mouth into our hearts? 

  
Today we celebrated you. Papa-daddy. Dad. Daddy. And you took us on a grand adventure. An epic bike ride along the waterfront.  Stopping for lunch by the water. Then weaving around and along the lakeshore. All the way to the other side of the city! My biggest bike ride yet. We celebrated with a play in the park and ice cream from the Ice Cream Truck. It was a hot one!

  
  
So hot that on the way home, along the waterfront, we made one last stop for a drink of water and decided to stay and get wet in a splash pad. The kids had the best time ever. And I know you had a lot of fun too. 

  
I thought I’d need you to push me up that last hill on the way home. Then I got my second wind and my confidence stepped up and I navigated behind you on one of the busier streets. You pulled our kids and our picnic pack up hills and around corners effortlessly. You are amazing. I’ve tried it a couple times, attaching the chariot to my bike and. It. Is. Tough. I was exhausted.  

  
You help me do a lot of tough things. Parenting is challenging. I wouldn’t want to do it without you. You make us all laugh when we don’t know if we can. While we have dance parties to de-stress while waiting for you to come home from work, you walk in and it’s like the dance party has arrived. You listen. You hug. You love.  

You are the best.  

Happy Father’s Day to Sebastian and Tallula’s Papa-Daddy. 

Love,

Mama-jamma