Happy birthday to Tallula. 

Dear Tallula,

Today you are three.  

You wanted to stay home and play. Just play with all of your new toys. ‘A stethoscope! Just what I wanted! And it’s pink!’

  
Pure excitement. You listened to a lot of heart beats today. You hung it over your shoulders ‘just like a doctor.’ And you were careful ‘not to leave it on the floor too much.’

You sang a lot of songs and scanned a lot of groceries. You stamped and coloured and did ‘sewing’.


Yesterday you had a Super Hero PARTY! You invited your friends to celebrate with you. It was perfect. There was face painting and a comic photo booth. Super hero capes and kite flying. Ball kicking and cupcakes. You pushed your new baby stroller. Superhero mom. And a big cool down in the wading pool. The park was the perfect place to celebrate on a hot summer day. We are so thankful for the friends and family that came to celebrate you!
 

    

We decorated your ice cream cake after whipping the whipping cream and choosing the colouring. Of course there were sprinkles, your main requirement. Ice cream cakes are about as delicious as the frosting you eat off your cupcakes because really you could do without the cake part.

 You are ‘free’ now. Until yesterday you were two. You read the tag on your clothing and get excited to see it written as ‘3’ knowing that it is ‘perfect’. Just for you. You’ve been waiting to measure your height on the card hanging outside your bedroom door. We were too busy celebrating. So it will have to wait until tomorrow.

I have such happy memories of your birth. I like to revisit that moment which was so hard that I wasn’t sure I could do it and the moments directly after you burst out into the world and cried. We cried, your dad and I, together. Pure happiness at your beautiful cry. And relief. That we could scoop you up in our arms and not let you go. Giving you those first moments to smell us and search for my breast to suckle. Our daughter! Tallula Violet. Leaping waters. Warrior. Little sister. Our little Lula lu. 

Boys and Swings 

  

East Lynn Park, Toronto. 

‘Mommy, someone is is the red swing.’

‘It’s ok sweetheart. We can wait our turn.’

I roll Sebastian over in the double chariot and stop next to the swing and Tallula scrambles off to the bouncy horse nearby.  A woman who had put her toddler in next to her baby (in the baby swing adjacent) says ‘times up’ to her kiddos and they move off to play elsewhere too. The special swing is free. 

At the park the only thing Sebastian can really do independently is swing in one of these swings. And he loves it. Tallula knows that these swings are for her brother and kids like him. When she sees someone who doesn’t fit, she lets me know. Someday she will let them know too. 

Usually it’s not an issue once we roll up. Parents ‘finish’ their kids’ turn and move on. Recently one mom explained to her kids why they were moving on and then we shared some small talk about the beginning of summer and the funny weather. It was awesome. It was also the only time a parent has explained what these special swings are for and who should use them. 

Back to today. After Sebastian was done swinging and ready for a snack, I started walking him to the chariot facing the swings. Tallula wanted underdog after underdog and wasn’t planning on getting out any time soon. 

Behind me I heard a group of raucous boys. Probably around ages 10-12. There were about 6 of them that immediately swarmed the swing behind us as I helped Sebastian over to the chariot. I looked back and asked them to wait a minute so I could continue helping Sebastian walk. They hung back long enough for us to leave the space. The largest boy climbed in and the started pushing him as high as possible. I watched them a bit while going between pushing Tallula and feeding Sebastian. He thought they were funny. And it was ok. For a little while. 

Soon one boy climbed on the side of the swing while the one was still swinging. The large swing moved towards Tallula. That’s when I stepped in. Essentially I told them it’s ok to use the swing when someone, like my son – who can’t sit on his own- doesn’t want to use the swing. But I also told them they need to respect it, much like they would expect someone who borrows their bike to take care of it. Because if they break the swing, kids that can’t sit up in their own won’t have a swing to use at all. I also let them know it was not ok to be so wreckless with my young daughter sitting next to them. She had been watching them and trying to process this whole time what they were doing. Know it wasn’t  ok. 

For the most part, the kids calmed down. One boy in particular wanted to argue with me; he was the boy I said thank you to when we were leaving. I know all of those boys didn’t hear me today, but I do know that he did. 

Parents, talk to your kids about the different swings on the playground. (Don’t swing in it while you wait for your child to be done playing, as Tallula also pointed out at another nearby park the other week). Teachers, you can talk about them too. Sadly, our city continues to segregate kids with disabilities from regular classrooms and even schools. These kids don’t know anyone with a disability. They might not even know what the word means. Or that kids with disabilities like to swing as high as the sky and touch their feet to the trees too. But they need a special swing to do it. 

Not Okay

A friend asked me how I was doing today. Everything’s good? Everything’s okay? She said. I smiled. Yeah. We are good. 

But things are not okay. 

It’s not okay that the school system is so broken. That it’s overcrowded and the programs created to support our kids are spilling over in numbers without the proper supports in place. So instead we are forced to place our children in segregated schools where they will have the support they need. Where you will find wheelchair swings and ramped play structures, which don’t exist on any other playground. 

Ali and I visited two schools last week for Sebastian. One was the school I had heard raved about for years. The inclusion is great! The school community and VP are fabulous. So involved. So accepting. It houses an ISP (Intensive Support Program) for kids with physical disabilities. The accessible entrance is on the side of the building. There are three floors, accessible by an elevator. There is a pool which stands empty for repairs. No ramp in or shower chairs for transfers. Though the kids still use the pool (when it’s full). The classroom is not much bigger than our dining room. In fact it could be the same size. I’m not sure how kids in their equipment (standers, walkers, wheelchairs) fit into the room together. Kids are in the ISP room at least 4 at a time and maybe up to 8 with next years’ numbers. They do their Maths and Literacy there. Some kids are 50% there and 50% in the regular class. Some kids are in there all day. There is no circle time. No story time. No science experiments. No cross-curricular learning. It’s a resource room. The regular classrooms at this school are filled to the brim too. 28-30 kids. 

The only way Sebastian would be able to attend a program like this is with a one to one aid. This would need to be applied for by the school and approved by the Ministry of Education. There are 5 EA’s (educational assistants) for two ISP classrooms (over 17 students with varying needs). 

So I cried when I got home and the next day I asked to see another school.

The day after that we visited the school I call segregated but the system calls congregated. The school I have been fighting against since we arrived in Toronto nearly 5 years ago. The principal was fantastic. The consultative therapy services have their offices onsite. There are two (working) pools. And that accessible playground I mentioned. There are teachers that know how to use the technology Sebastian’s needs to access the curriculum. It’s very similar to his current school, minus the therapy. There are 7-8 kids per class with 2 EAs and the teacher. Sounds great, right?

  
Sebastian had an awards ceremony at school today. He received an award for Responsibility. He is responsible for making his voice and his choices heard. I was so proud of him and he was equally proud of himself up there when he received his award. I saw a lot of his friends from nursery school get awards too. We’ve really been a part of a community here. 

At the end of the assembly there was a slide show of photos from the term of kids learning. Sebastian’s face beamed across the screen, his smile wide and his eyes happy. He wasn’t building things or making art. He is included in his program undoubtedly but he accesses everything on a different level than kids who can physically manipulate objects. And I realized those ISP classes aren’t created for kids like Sebastian, that need a lot of extra help and care (but are also capable of learning and communicating). They are created for kids with minor physical disabilities that may also have a learning disability and need some extra help. And those supportive programs in the segregated schools are created for kids like Sebastian. If inclusion really were a priority (in the year 2015 it should be), at the very least the ISP classroom should be able to accommodate Sebastian. And those kids that are in the ISP class? They should be accommodated inside the regular classroom. At the very least. Because that’s what inclusion is.  

My vision of Sebastian learning side by side with his peers and someone in the classroom to help him do that will not be realized this year. 

But I’m not giving up. But first, ice cream. From the ice cream truck, naturally.