Take off and landing. 

Feeling nervous about flying with Ali and without the kids for the first time. Ever. Just going from Melbourne to Sydney for an early anniversary (10 years!) overnight but it still feels a bit scary. Also having left after they went to sleep last night to stay out closer to the airport at a family friends; I keep imagining them waking up for us and realizing we aren’t there. Remembering we will be gone for two bedtimes. They are in their Granny and Pop’s care which I know is good but I can’t shake the anxiety. 

Outside the plane window is a faint horizon as the sun hasn’t come up just yet. Still under a blanket of stars we head down the runway into what looks like the outback to a North American girl such as myself. The plane picks up speed and I link arms with Ali for a fairly smooth take off. I always feel a bit of a rush during take off. I’m usually bracing myself a bit more for landing though the biggest rush comes when you step off the plane to somewhere new or even return to someone’s arms. 

The seatbelt sign dings off and the lights of towns below glow in the early morning hours. To maximize time we got a 6am flight and will depart around the same time tomorrow evening, arriving home just after the kids are asleep. Having left last night while they slept, I will admit I’m already looking forward to kissing their sweet cheeks when we get home. 

But Sydney awaits! Sunshine, sea, and shopping! Good eats and drinks, maybe even some live music and dancing. Who’s to know but as we are heading into the next 10 years together we are excited to find out all that lies ahead. While I know we will feel a bit rejuvenated when we come out on the other side; feeling like a twenty something, newly in love again is the best part. 

  

Maple Syrup and Inclusion

On Friday I took the kids to Kortright Maple Syrup Farm to meet Sebastian’s class for a school field trip. We were running late due to a morning appointment and I wavered between going and staying home. The clouds hung heavy and rain was in the forecast. The kids really wanted to go, regardless of how late we would be. I was nervous. It was a 45 minute drive outside of the city to an area I hadn’t been before and I would be taking the kids on my own. When you have a kiddo with additional needs and a pretty energetic toddler, that can be a frightening prospect. I decided to take a leap and step out of my comfort zone. And it was awesome.

We arrived in time to have lunch with Sebastian’s classmates, which the kids were super excited about. Tallula, not surprisingly, is an honorary member of class and really gets along with one of the girls that has basically seen her grow up as she’s been in Seb’s class for the past 3 years. Everyone was happy to see Sebastian and he was glad to be there. After lunch, we tried some pancakes and the delicious maple syrup, stopped in at the gift shop, and then parted ways for a self tour as the rest of the class had to head back to school.

The first challenge was making it down the very steep hill with Sebastian’s very heavy wheelchair. While it is a paved path, there is some gravel and I was less than confident with the traction in my boots. I definitely envisioned loosing my footing and being dragged down the hill behind Sebastian’s chair, refusing to let go, much like I was as a child by our dog Boo Bear who had gotten off his leash during hunting season. But we made it and the uphill climb upon return was perhaps studier albeit short breath inducing.

We joined a few of the other school groups  having demonstrations along the path so that we could learn first how the native americans tapped sap and turned it into syrup, then the pioneers, and finally the folks of the future, the ones with electricity. The kids really enjoyed the demonstrations and as most of the groups were secondary students they were very thoughtful in moving aside so the kids could see, as well as made sure we had a clear path with the wheelchair. I did spot one of them trying to snap some photos of Tallula looking in the fake tap buckets (she’s so cute!);  while it’s sweet, I always worry her photo will end up on someone’s Facebook page. I suppose a hazard of said future/present. Modern times.

The last stop was the Sugar Shack, which was set up outside due to a fallen tree during last weeks’ ice storm. There was a primary school group in front of us so we went up close with them, partially because we blend in because the kids were similar age group and also so the kids could see. Of course, we do not blend in at all. There were a few kids at the front that decided Sebastian was more interesting to point, stare, whisper, and then -yes- giggle at, instead of learning about the journey of the maple sap to syrup. I was really trying to ignore them. I smiled and tried to act like we were just a family there to learn about maple syrup because that is actually what we are and were trying to do. I didn’t see their teacher nearby. Tallula sidled up close to Sebastian and started making her whining sound that she makes when she is not happy with the outcome of something or if something isn’t going her way. I could tell she was not sure about these kids and how they were acting. Some moments are teachable and some moments you just want to experience life and not have to be the one educating all the time.

So that I can take my kids out on my own and just enjoy the time with them, I am reaching out to the teachers. Teachers. Teach your students about differences. Teach them about acceptance and inclusion. Teach them about kindness and curiosity. Teach them about asking questions and saying hello. Teach them that kids are kids first. And they can have many things in common with kids that are different from themselves. If your school is still in the ‘dark ages’ (as I can refer to my own youth now that I’m on my own way to 40), and doesn’t include kids with disabilities in your classroom, or even in your school, then teach them about kids that are different because it will help them become a better person. Because society should include everyone. And they will grow up to be contributing members of society. Because in our own way, we all are.

I finally had to stop the kids and remind them that they were missing the entire presentation. I am tired of teaching kids that we encounter how important it is to be open minded and curious while also being kind. I am tired of teaching kids not to point or stare. Whispers and giggling was new for us. I’ve reached out to parents. And now I’m reaching out to the teachers that take these kids out into the wide world where they have the opportunity to expand the bubble that they experience at their non-inclusive school. And I’m pleading you, take it. Because honestly, I can’t do this alone.

***

That said, I had a really, super-duper, fantastic time with my kids. All on my own. I did it! It felt so good to get out of my comfort zone and experience a new adventure far from home with Sebastian and Tallula. I used to take so many  risks before I became a mom. When your child is born not breathing, it changes you. A lot. So for me, stepping out of my comfort zone is a big deal! And I did it. There were no meltdowns. Not mishaps. No lost kids. Everything was fine. It was fun. Tallula is more than a toddler these days too. She’s her own little person. And she’s growing up to be quite a fine one, if I do say so myself.

Where to next?

 

‘I could meet him there.’

I’ve started going through my drafts and finishing them. You know those moments when there is something on your mind and you want to get it out into the world and then you run out of steam and you don’t. Those thoughts tend to get buried beneath the newer ones. But here we are nearing the end of a very rainy March Break and well, these thoughts still rise within me so here I am, finally finishing them.

Sometime in January, I started with this…

There’s a March Break camp for kids ages 3.5-8 at a local kids programming centre. My kids both fit into that age bracket. But they can’t both attend the program. There are stairs leading into the centre. There isn’t support staff for kids with disabilities. The program only caters to able bodied kids. Is it being exclusive? Or is it following programs all over the city that are created with the status quo in mind? Certainly it’s not following the example of the school board. Or is it?

There are only 8 elementary schools in all of Toronto that have programs to support kids with physical disabilities. There are over 595 schools across the TDSB. I’ve also been looking into alternative school programs. The ones with wait-lists and lotteries. The ones that have holistic learning, learning time outside (Waldorf inspired), social justice and environmental curriculums. The ones with philosophies on their websites that include everyone. Everything except kids in wheelchairs. ‘I’m sorry, our school is not accessible. I wish you the best of luck in your search.’ Even with the AODA Accessible Ontarian’s with Disabilities Act, there is no plan to make schools in Toronto fully accessible for children using wheelchairs. Many of these alternative, optional attendance programs are on the third floor of buildings. I find it ironic that their philosophies clearly state, ‘equal education for all’, when they’ve left out a part of the population entirely.

It’s frustrating. Stressful. Heartbreaking. For me. I woke at the beginning of the week with a pinched nerve in my neck. My chiropractor asked if I had been unusually stressed recently. Unusually? Not sure about that, but excessively? Oh yes, the past couple of weeks have been hard.

…and tonight I’m finishing it.

I asked Tallula if she would like to go to a school where both she and Sebastian could attend together. She said yes. ‘Wouldn’t it be great if there was a school where you could both play on the playground at the same time?’ She replied, ‘I could meet him there.’ She looked up and me and smiled and I squeezed her hand as we crossed the road from her play school to the car. Later that day I asked Sebastian the same question. I was a little afraid to ask him because I wasn’t sure what answer I would get. He has a good group of friends at his school and I wasn’t sure he would want to leave them for a new school. But when I asked him if he would like to go to the same school as his sister, even if it meant leaving his current school and making new friends, his answer was yes. He is a social guy. He likes making new friends. He is also tired of riding the bus. It was novel at first…last year. Now, the bus driver changes often and while he usually likes his bus driver, he’s told me he no longer likes riding the bus. And why would he when he has to get on just after 8am for a 9am start and isn’t home until almost 4pm every day. An hour each way for a 20 minute drive because the bus is full of kids that don’t all live in the same neighbourhood.

I pick Sebastian up twice a week and drop him off some days too. I try to give him a break from the long days. When I’m driving to and fro I wish life was different. I was I could walk my kids across the street to our neighbourhood school. I wish that people thought it was important to have diverse classrooms. Instead I walked by the other school in our neighbourhood this week (on the one afternoon it stopped raining) and a boy stopped playing and pointed at Sebastian and shouted ‘It’s a boy.’ Pointed at him. And shouted. ‘Yeah, you are right, he is a boy, just like you.’ I replied. And then, ‘You know it’s not nice to point, right?’ And he stared. And Tallula walked up next to Sebastian and placed her hand on the arm of his chair. Creating a barrier between him and the boy. And we walked on.

I want my kids to go to the same school so I’m not sending one on a bus for an hour and walking the other to the school across the street. I want my kids to go to the same school so that the other programs in the neighbourhood will recognize that there are kids of all abilities in their neighbourhood and, hey, why not get StopGap to make us a ramp so we can begin to include them. I want my kids to go to the same school so that we can be in a community that will embrace them together. Instead of pointing at them and singling them out for being different. I want my kids to go to the same school because they deserve to be in a place that provides equal education for all. We are in a school board that says kids will be put in the most inclusive environment possible but they don’t make it possible to do so. I want my kids to go to the same school, because why wouldn’t I?

 

 

On Politics

  I woke this morning from a bad dream. I’ve been having them the past few nights. Sometimes apocalyptic in nature. Sometimes subconscious anxieties. This morning the election in the US was on my mind. While today is International Women’s Day it is also the primary in Michigan. I felt like I needed to put something out there. 

Michiganders: today you vote in primaries. I have seen a lot of articles and memes lately with

Donald Trump mocking those with disabilities; in addition, we all know his rhetoric re immigrants/refugees. 

Trump supporters are not supporters of my family. There are a lot of things about our family that he doesn’t like. Our son has a disability. Our son and daughter were not born in the US (though they are US citizens through me). My husband is not from the US. He has to get a visa each time we cross the border. We actively support bringing Syrian refugees over to Canada (and elsewhere). We support programs that create equal opportunity, education, and health care for those with disabilities and without. And we believe women should be paid equal and sometimes more than their male counterparts. We also believe in a woman’s right to choose. 

At first I was afraid at the Trump following. Now I’m afraid and sad. I’m sad because there are so many people that believe it is ok to marginalize and bully people with disabilities, as well as based on race and gender. I’m sad that there are so many people that would not welcome our family in a place a part of me will always call home. 
Trump supporters are not Sebastian supporters. Or Tallula supporters. Or Ali supporters. Or my supporters. 

I ask you to think about this when you decide not only who you want to run the country but also the kind of place you call home. I want my children to grow up in a place that welcomes people from all backgrounds and celebrates their differences. What about you?

50 Days Ago

I wrote a letter. 

  
Dear Tallula,

I miss writing you letters every month. I think back and hope I can remember all the little things you do and the big things you teach me. I hope the pictures I take remind me when I forget. Because as time passes, I will. 

I’m sorry I didn’t do a better job today to help you navigate a situation at play school where a little boy didn’t want to share a shovel with you. I was too busy helping you learn to do it on your own. And taking photos of kids playing in the snow for the school blog. Then I saw you in one of those photos tonight. There you were, facing away from the group, head down. My heart hurt seeing your sadness and defeat. I wished I could have gone back and helped you. 

I want you to always know that I am there for you when you need me. But also that you are strong enough to navigate through life’s hurdles on your own too. I hope that I can be better at extending my hand when you truly need it. 

I love you. 

Love, Mama

Jan13.

  

Upsee Therapy Programme and Webinar!

 

I was thrilled to learn about the launch of the Upsee therapy Programme. With Sebastian at school full time and weekends spent having fun as a family, we find little time to ensure he also receives therapy. During the summer months he spends time outside in his walker and on his bike but those options aren’t available during the winter months. While he does have All Abilities Soccer on Sunday afternoons this winter (and last), I still worry whether his body is getting the movement he needs. We now have a stander at home and he does get time in his equipment at school (including his walker and now a bike) on a rotary basis but I want his body moving in independent ways too. I also want to know that what we are doing is helping his body and without consistent input from a therapist, that can be challenging. We do have access to consultative therapists at school, but it’s not the same as one-on-one work during a certain time each week. While the Upsee therapy programme doesn’t replace that input a therapist can provide, it does give me guidance in how I can use his Upsee to incorporate that movement and therapy that I want to, into our weekend adventures.

The Upsee gives him the freedom to initiate movement with our support, while easily exploring the world around him. We now keep it in the car so we can take it with us wherever we go, which is not possible to do with his walker. Our vehicle is not accessible or large enough to take his additional equipment with us when we are out and about exploring. Having the Upsee along with his wheelchair makes a day out even more fun and allows him to access his environment and activities in different ways.

The Upsee Therapy Programme booklet is now available to download for free, or to purchase from the Accessories section of the Firefly Friends website. Booklets will also be included with all new Upsee orders.

This downloadable guide helps you choose activities, set goals and map developmental progress of your child using the Upsee. It guides you through a series of Mobility, Ability and Participation goals and activities. Each one is carefully mapped and selected by Firefly’s & Leckey’s expert team, who modeled the programme on the World Health Organisation’s ICF-CY framework.

Firefly will be hosting the Upsee Therapy Programme Webinar  Thursday 18th February at 6.00-6.30pm GMT (1.00-1.30 EST). It will be hosted by Firefly & Leckey’s Clinical Research Manager, Clare Canale, along with Claire Smyth, Firefly’s Digital Community Manager and special needs parent. Claire has used the Upsee with her son Daniel for three years and is working with Clare Canale on documenting his progress following Upsee use.

This webinar will give you the chance to ask their experienced team members any questions you have regarding the Upsee and the Upsee Therapy Programme, as well as giving you more confidence and motivation to use the Upsee.

 If you would like to learn more about the Upsee and its potential benefits, register here for the webinar.

Hope to see you there!