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

Guest Blog Post: Petie’s Story by Andrea Haefele

In celebration of World Autism Awareness Day, I am honoured to share a guest post written by my friend, fellow teacher, and rad mother, Andrea Haefele. For the past three 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.

Please read Andrea’s post dedicate to her son Petie below, and if you can donate to support the Lion’s Foundation of Canada to help provide service dog to families in Canada in need.

Dear Petie,

I often wonder if you realize how special you are to your Dad and I. Most of our days are consumed with worry for your big sister, Bella, who has special needs. Although it may seem like we don’t worry about your needs, we hope that you will always realize what an important role you play in our family.

You were born when Bella was 3 years old. At the time, I was very overwhelmed with many feelings about who I was as a mom.  I was evaluating my pregnancy as if there was something I had missed, or something I could have done to prevent Bella’s exceptionalities. On top of her developmental delay in all areas of growth and development, your Dad and I were told that she was also on the severe end of the Autism spectrum. Educating ourselves on Bella’s condition turned into a full-time job and our lives completely changed. Your arrival to our family was a gift, as we began to focus our time on raising you to be strong and empathetic – knowing how important you would later be to your sister.

As a baby, you were always easygoing and made motherhood a breeze for me. You ate and slept well, and loved to explore the world around you. As a toddler, you began to notice and follow your big sister. You would always try to keep up with her as she started to walk independently when you started to crawl. You were fascinated with her therapy swings as she worked on her balancing exercises. You took a special interest in her cause and effect toys as she giggled when something popped or lit up. Your first display of jealousy was when Bella started to communicate. Her binder of picture cards intrigued you, and as I handed her a toy in exchange of her request, you learned the power of your voice.

Today, you are four years old. Although you haven’t even stepped foot in grade school yet, your voice is more powerful than that of any other preschooler I know. When we are out with Kadence, Bella’s service dog, you proudly tell others that Kadence is working. “Just looking, no petting!” you warn as others approach.

A few months ago, we were at a birthday party at a bowling alley. One of the waiters came to take your food order. When the waiter approached Bella, without hesitation you informed her: “My sister wants grilled cheese and French fries. She has a water bottle so no drink for her.” When we have friends over to play, you sternly state that they cannot sit in Bella’s spot at the table, because she needs a special chair and plate to eat.

Your dad and I spend a lot of time with Bella. We take her to countless doctors’ appointments, specialist visits and endless therapy sessions. When you tag along with your favourite book or toy train, you sit quietly at the table colouring and cutting your latest piece of artwork. When we leave a restaurant in a rush, you quickly finish your meal because you understand that the bright lights or loud sounds make Bella irritable. I know you see the love that we have for your special sibling, but I wonder if you realize the love, gratitude, and admiration that we have for you.

For you, these trials and tribulations that our family endures is just a part of life. My dearest Petie, awareness of what makes us all uniquely different is something that is natural to you. At a young age of four, you have already gained more wisdom than most adults. Your natural instinct for compassion, empathy and humility is something that many will never understand. Growing up with Bella has given you the awareness to look beyond a wheelchair or a cane, and to see the invisible needs of the person inside.

My dearest Petie, your voice is also Bella’s voice. Although Bella cannot use words to verbalize her needs, you know her happy screams, as well as her distressing whimpers. You know that when you sing Old Macdonald or Wheels On The Bus, she will always clap and smile. You notice when her glasses are crooked and you hold the frame to set it gently around her ears. You guide her hand to point at her communication device to teach her how to request a toy she wants. When it is snack time, you share your last goldfish cracker with Bella. I quietly observe as you cue Bella’s elbow during IBI therapy so she can imitate her therapist. At night, you help Bella put on her pyjamas and role model how to use her GoTalk to say good night. When she falls, you run upstairs to get her blanky and play peek-a-boo to make her smile. You always see what she needs. You see that she needs you. And your Dad and I see all everything that you do for her.

Our list of worries are endless. Will Bella trip on the uneven surface of the playground if we let go of her hand today? Where will she be when she has her next seizure? Are her peers at school empathetic and kind to her? But one thing that we never have to worry about is the pride and love that you have for your big sister.

You are and will be amazing in this world. Thank you Petie.

Love,

Mom & Dad

Last year, our family was given an incredible gift by the Lion’s Foundation of Canada in the form of an Autism Assistance dog guide for our daughter, Bella. Kadence provides safety and emotional security for Bella, and has become an integral part of our family and her school community in the process. Please donate HERE bit.ly/1P0yND4 to help the LFC continue to provide service dogs to Canadians with disabilities and their families.

 

 

Guest Post: What’s It Like To Rock Tribe’s My First Race Program

Through the Tribe “My First Race” mentoring program I’ve had the pleasure of meeting and running with over a hundred new or returning runners. Folks who literally got off the couch to join our run, those returning after having a baby, and those looking to connect with family through fitness.

As we begin our third “My First Race” program I wanted to share a story of an amazing inspiration, Ljiljana Stanojevic, a fierce mother who not only met her goal of racing Spring Run-Off as part of our training program, but then went on, with the motivation of her daughter, to race a 15km road race and a half marathons during 2015. Ljiljana has a drive and energy that is truly contagious and you can’t help but be inspired when you sweat with this gal. Please enjoy the “My First Race” story of Ljiljana.

When I joined the ‘Learn to run’ program I couldn’t run. I thought it would be easy to start running, but all my attempts failed and I ended up with sore muscles and an injury. During a weekly yoga class held by Tribe Fitness at MEC Toronto, I heard about the ‘Learn to Run’ program with Canada Running Series and signed up without too much hope that I would ever be able to run, was I ever wrong.

IMG_2043My first day of training was interesting. I was nervous and I thought that all the other participants would run with ease while I fell behind. Thankfully, all of the Tribe mentors were there and were so encouraging, patient and supportive, explaining what to expect and the difficulties that everyone can face when beginning to run. We were all given a training schedule provided by Tribe. During this first session we ran for 1 minute, walked for 2 minutes, and repeated that for a specified amount of time. During the week we were told to run two times on our own as part of the program and once a week we would meet and run with Tribe. The running time would increase and the walking time would decrease every week.

A draw to this free program is that we were teamed up with experienced run mentors from Tribe. We would connect through email and in person at the weekly runs. My mentor, Jenna Pettinato, was amazing. She helped me by providing valuable advice and sharing her own experiences. She understood the difficulties that I had and followed up with my training through emails. If it wasn’t for her, I wouldn’t be running today.

IMG_2042What I loved most about the ‘learn to run’ program is that Tribe is like a family. They care and help each other and always welcome new members. I felt very comfortable during my training and later on during the runs with Tribe. Tribe’s founder Heather Gardner invited various representatives of sporting goods and supplies stores to come during the training sessions to talk to us about proper clothing, running shoes, nutrition etc. which was very helpful. We learned more than just running, we became part of a community.

The goal race was Spring Run-Off. Everyone knows it finished with a giant hill. During the Spring Run-Off killing that hill would have been impossible without the Tribe cheer squad standing at the bottom cheering everyone on. You get an energy boost when you see a bunch of people yelling words of encouragement, holding signs, dancing, and telling you that you can conquer the hill.

One thing I would tell a new runner would be, you can do it! It’s an amazing program. Your mentor and all the Tribe members will be there to help you all the way. You will not regret it. Trust me, you are going to kill that hill!

If you’d like more information or to sign up for this free training program, find all the details here.