Guest Blogger: Andrea Haefele Moving #BeyondAwareness

In celebration of Mother’s Day, I am honoured to share a guest post written by my friend, fellow teacher, and rad mother, Andrea Haefele. For the past four years Andrea has shared her personal story about her family’s mission to bring visibility to children and families living with disabilities in support of her daughter Bella who has severe Autism Spectrum Disorder. Read Andrea’s previous posts here. I have enjoyed supporting my friend and her family, including Kadence, their Autism Assistance Dog Guide for Andrea’s daughter Bella. This time around Andrea gets personal and shares what it’s like to be a mom “in crisis” and the need to move #BeyondAwareness.

I am a 37-year-old mom that is approaching her mid-life crisis, when in reality I feel I am living in a world that is in crisis. For the last 7 years, I have made it my mission to promote awareness – awareness of autism and sensitivity for families living with disabilities. However, I have reached a point in my journey where awareness is no longer enough. I often feel like we reside in a society that simply tolerates my daughter and her complex needs.

My full time job as an educator is my vacation. I equate my journey to school every morning to heading to the beach, a place where I can embrace the sun on my skin and sink my toes into the sand. At work I have full reign of my passion as a teacher. I am in an environment where I can be creative, take risks and participate in cutting edge professional development.

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When the school bell rings at the end of the day, my “vacation” ends. Real life begins, and I switch gears into mom-mode, and like any other mom, I pick up my kids from their respective schools. Then, I make dinner, pack lunches, and go through the bedtime routines, typical tantrums and messes.

Once the sun has set, my life veers again in a different direction and my third shift begins. I now transform into an experienced administrator and manager of a child who has disabilities. I research the Internet to find resources to fund the endless costs of the intensive behaviour intervention therapy program that Bella requires. I juggle the endless therapy sessions, doctors and specialist appointments in our calendar to ensure that her physical health is looked after.  I look to social media to connect with other families who live my life as my professional learning network. As I press ‘send’, I repress the urge to scream through my emails in order to advocate for a system that can provide Bella, and other children like Bella, with the education that they deserve.

By the time bedtime rolls around, my fears take over as I think of Bella’s future. What happens when she graduates from high school? What are our options?

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I’m scared of what the future holds for our family. Although my life seems challenging these days, these obstacles pale in comparison to what our lives will be like when I can no longer continue to advocate for Bella. The reality is that families like ours are often cut adrift when our children with special needs reach adulthood. We are left to fend for ourselves in the face of dwindling social services, and even less than the meagre level of accommodations available to adults with disabilities. It is daunting knowing that it is all up to me to ensure she is taken care of. Some days are happy days, but most days are difficult and feel almost impossible.

A month of awareness, wearing a ribbon of hope and donating money to a charity is simply not enough to improve the lives of people with disabilities. As I write this blog post, I ask myself this question: What could be done to make the world a more comfortable, respectful, and nurturing place for the millions of people who live with disabilities? The answer to this crisis begins with each one of us.

Accept us. Bella’s list of disabilities are more than a doctor’s credentials. Severe Autism Spectrum Disorder, Pitt Hopkins Syndrome, Global Developmental Delay and Cortical Vision Impairment are just a few of Bella’s diagnoses. Acceptance starts by understanding that these labels do not make us defective or diseased. When Bella is spinning, banging and licking every toy you give to her, understand that this is how she plays. Accepting us does not mean ignoring or denying our disabilities; it means accepting us for who we are, as we are.

Respect us. We are people, fellow human beings. We deserve to be treated with the same respect afforded to our peers who are typical developing. Respect starts by understanding that we are full, with an individual personality, life experience, goals, and preferences. We deserve an education, access to communication and a place in society to belong as we become an adult. We deserve to live without fear of being abused, manipulated or hurt. We are not less than.

Support us. Because we are disabled in varying degrees and in multiple ways, we need support, services and accommodations to successfully navigate a world that is not made for us. Bella needs intense therapy to help her learn basic life skills. She needs her chewy tube to help her sit and regulate her inability to stay still. Bella requires her service dog to support her physical and emotional well being. Your societal norms are foreign to us. Supporting us starts by understanding that we are connected to a family that can best define what types of services we need, both in education and at home. Only with appropriate supports can we have equal access and opportunity.

Include us. We deserve equal access and opportunity throughout the community and throughout our lifespan. Inclusion is more than letting us be in a room with peers our age. Inclusion starts by understanding that we are part of the community and deserve to be in an environment that is created so that we can meaningfully contribute and participate. Being tolerant of my daughter’s presence is not inclusion. Give us the appropriate accommodations and modifications we require to fully participate. We need to and want to belong.

Listen to us. Bella’s augmentative communication device is her voice. You can say more than a simple hello. She is more than a cute little girl who has a big smile. She has favourite toys, activities and preferences. If she wants to protest or be heard, she knows the power of her ‘finished’ button. If you are unsure of how to interact with her, just ask. Many conversations about the issues that affect Bella’s life take place without her and our family being present. Listening starts by recognizing that these children have a family who have valid, legitimate and important things to say. We must be included in any conversation about our child, because decisions made by policymakers, school administrators, and grant reviewers impact our daily lives and our future outlook.

20161015-044.jpgAs I approach my mid-life, I realize that I want to carry myself with grace and find joy in every day, despite the challenges that our family has been given. I strive to surround myself with people who can build a community of love, empathy and acceptance. I have faith that when I am having a tough day, you will be around the corner doing your part to build a society where everyone has a voice and a place.

Every year my family fundraises for a charity that can have an impact on children like Bella. This year, I am asking you to share your ideas on going  #BeyondAwareness. Through your social media of choice, how will you take the initiative to make your community an accepting, inclusive space for ALL families who live with disabilities?

  • If you are a family who will be affected by the upcoming new Ontario autism program coming in June 2017, how can you share your journey to advocate #BeyondAwareness for the education and services our children deserve?
  • If you are an educator, what does going #BeyondAwareness look like in your classroom or school community?
  • If you know a friend or family member who is navigating the world while living with a disability, how can you do your part to ensure that community organizations go #BeyondAwareness to support our vulnerable citizens?
  • Share an organization you know that goes #BeyondAwareness for people with disabilities and help families get in touch with them.

Please support our communities by moving #BeyondAwareness.

Andrea

5 Moves to Help You Keep Fitness a Priority on Vacation

When it comes to reaching your fitness goals, consistency is key. So don’t let dashing through the terminal be your only workout while on vacation. Here are five full-body moves that are equipment free, and can happen in minimal-space or out on the beach to help you make it happen no matter where you are. Plus, squeezing in a quick workout or two during your vacation will make it easier to get back in the swing of things after you’ve unpacked your suitcases. Here are five moves I shared on CH Morning Live on Thursday April 4th. Watch the segment here.

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If you’re a beginner, do 30 seconds of work, 30 seconds rest per move. Intermediate: 40 seconds work, 20 seconds rest Advanced: 50 seconds work, 10 seconds rest.

1. Traveling Lunge: Standing with feet hip distance apart, step forward in to a standing split position and slowly lower your body until your front knee is bent to at least 90 degrees. Pause and then return to standing. Using the same leg, step backwards with the right leg and slowly lower your body until your front knee is bent to at least 90 degrees. Pause and then return to standing. Those two movements are one set, continue for a designated amount of time (see above) then repeat on the other side.

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2. Plank Walk Out: Start standing with the feet shoulder width apart and arms hanging down to the sides of the body. Slightly bend the knees and bend over and placing the hands shoulder width apart on the floor, so your body is in the shape of an inverted V. Walk forward four steps forward with your hands until you reach a plank position. Walk hands back in towards your feet and return to stand.

3. Marching Hip Raise: Lie face-up on the floor with your knees bent and your feet flat on the floor. Raise your hips so your body forms a straight line from your shoulders to your knees. Lift one knee to your chest, lower back to the start, and lift your other knee to your chest. Continue to alternate back and forth and to make it harder, lift those hands up and decrease your base of support.

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4. Plank Jacks: From a high plank on your toes, jump both feet out and in while keeping your shoulders stacked about your hips and core stable. To decrease the challenge, perform a step touch with each foot reaching it out to the left and back center before repeating with the right.

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5. Push-ups: Get into a high plank position with hands on the bench or stair directly under shoulders. Begin to lower your body until your chest grazes the bench/stair. Keep your back flat and eyes focused about three feet in front of you to keep a neutral neck. Push back up.

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Others ways to sneak physical activity in while on vacation:

  • Explore your destination by foot either walking or hiking around.
  • Hit up your hotel gym and hop on the treadmill or lift some weights before you start your day.
  • Take a drop-on class at a local studio. Not sure where to go? Ask around your hotel or at an active wear store.
  • Bring compact workout gear in your luggage. Consider a skipping rope, resistance band, or folding yoga mat.
  • Partake in local sports. Whether it’s surfing or SUP, who can resit getting active in a stunning beach destination? If you’re not comfortable on the water, take a class, and enjoy this full body workout.

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So whether you’re on the road for work, fun, or visiting family, there’s no need to take a vacation from your workout too!

What’s your favourite way to workout on vacation? Share it in the comments!

Scotia21K Race Weekend Recap

Last weekend was an awesome experience for our Tribe, and the Toronto running, community. With the support of Canada Running Series (CRS), Run TO Beer and Tribe arranged a bus trip for our crews to have a weekend away racing in Montreal.

All Aboard

At 8am on Friday morning the 40 runners and CRS staff boarded the on route to Montreal. Participants had the option of signing up for bus transportation only, bus and hotel, or bus, hotel, and race. When racing participants could run the 5km or 10km on Saturday and/or the half marathon Sunday. Participants who raced both Saturday and Sunday received a special “spinner” medal (photo at bottom of post). This was the first time CRS had ever created such a medal, and they out did themselves, it’s very cool.

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On route we had one stop in Kingston at Sir John’s Public House. Although we had a reservation the pub was not prepared for such a large group (plus they had a second large group booking) which made our lunch for 40 a challenge. We also had many unique dietary requirements which, although the bud said they could accommodate, they put us on a group menu, is the types of foods were limited, which posed another challenge. I ordered a chilly which ended up being delicious. I was very hungry by the time it arrived, so certainly could have used a bigger portion, but it tasted great.

Eventually we were on our way at made it to our hotel, the Novotel Montreal Centre. The hotel processed everyone very quickly and we were all off to our respective rooms for a short break before we reloaded the bus to head over to kit pick up and the shake out run, hosted by Run TO Beer, at the Boutique Endurance.

The Shake Out Run

Boutique Endurance is an amazing running store. Not only do they have all the best names, the varieties of styles, and gadgets and gizmos every runner needs to very extensive. We received our kits and then checked them with the CRS team who shuttled them to the finish location of the shake out run, Ma Brasserie. As always, Run TO Beer had a great team of pacers ensuring that no one was left behind as we ran a simple 5km route through Montreal.

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Ma Brasserie was a large brewery that had plenty of seating, reasonably quick service, considering they were open to the public and we were a group of 50-ish. They also sold food, so while others were sampling some of the local offerings I had a delicious pre-dinner humus.

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After a drink, Tribe exited the party early to get some real dinner in us as some of our crew was racing the next day. We randomly found a place close to the hotel called Cibo & Vino and it was perfect! We arrived and the place was empty, we later came to the conclusion that people in Montreal eat very late, and with our race schedule we were having dinner between 6-7pm both nights. Our group of 12 was split between pizzas and pastas. Everything made fresh and just to order.

After dinner I called it a night. Nanc (my sister) and I had the 5km race the next day and I wanted to get in some good stretching and be in bed before 10pm. This is a typical race routine, so I really wanted to stick with it, even being away.

The 5km

The next morning we were up to catch the bus for 7am. The 10km started at 9 and the 5km started at 11. It was going to be  long day of racing and cheering. The bus arrived to the race area in great time, and rather than heading to the start most people stayed warm and cozy on the bus. Eventually we headed to the start. CRS had provided us with VIP passes so we were able to hang out inside an area with seating, drinks, eats, and our own washroom. This was very thoughtful of them and greatly appreciated. They let all the members of our group come in.

After a hour plus of cheering it was mine and Nancy’s turn to race the 5km. We got ready in the VIP area and when we ventured to the start line it started to pour! This wasn’t great, but luckily it eventually let up.

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The 5km used the same route as the ten and turn around at a fun round about, so you literally just ran in a big circle – which was nice compared to the hair-pin turn I was picturing in our minds.The course was very flat and while the terrain became very wet from the rain and run off we still managed to have lots of fun. Plus how could we not with our Tribe cheer station motivating us to the finish!

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This was Nancy’s return to racing this season so we took it easy and had a great time being together. And since I was racing the 21km the next day – and because I love my sister – I didn’t mind.

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After the race we all boarded the bus and returned to the hotel. Everyone took a brief break and around 1:30 reconvened with some of the group joining the Run TO Beer pub crawl that was already in process and the other adventuring through Montreal doing the tourist thing – I did the tourist thing.

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We hit up a great boulangerie for lunch, then went to Simons and eventually made our way to Notre Dame. The walking on top of the mornings race was definitely getting to us, so we changed our dinner plans to this little Italian place across the street from our hotel.We met at 6pm and AGAIN we were the only people in the restaurant. With most people racing the next day it was pastas all around. Again the food was amazing and everyone left happy and ready for a night of chilling and stretching before bed – or at least that’s what I did.

The Half Marathon

Saturday morning came very fast. Breakfast was a repeat of the day before which was Allison going to McDonald’s and getting bagels and juice for Nancy and I, along with her own breakfast. Once we arrived to the start line we made our way again to the VIP room. The team stretched and prepared for the race. The weather was amazing. It was already getting close to double digits when we hit the start line.

file-6The 21km course take you through almost every area of Parc Jean Drapeau. This included a loop around the amusement park, circling around the rowing basin, and looping along the Indy track. A very cool experience as this was the location of my Half Iron Man in September. It was fun to relive so many of those memories while running through the space. I think this, along with the heat, led me a few times to get distracted and confused with my pace. I thought I was at different km then I actually was, and the pacing math in my head just wasn’t making sense. It was a great run, fun course with awesome sites, and I certainly am not going to complain about the heat. I didn’t come across any great finishing time. I knew with racing the double this was more about fun and time on my feet. I did reach my goal and I did have lots of fun.

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Following the race we had time in the park to relax while the remainder of the bus tour crew who didn’t race or cheer arrived. We lounged in the sun, explored the biodome, and just enjoyed being outdoors in the great weather.

The trip home was also uneventful which is always nice when traveling. We stopped at a plaza filled with lots of different fast food places to meet everyone’s needs and a few hours later we were back in TO.

This trip was a blast. It was my goal when discussing the idea with CRS was that we would bring our elaborate TribeTour race trips to a more accessible price point. And with their help, and our friends at Run TO Beer, I think we did it.

Next Tribe Tour Seawheeze, and then Barbados! Hope you’ll join us!