Guest Blog: Letter to Kadence by Andrea Haefele

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 two 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 was personally inspired again by Andrea (if you know this power house momma, you’ll know this happens regularly) when a couple of months ago she shared with me her family’s latest excitement, their newest family member Kadence. Kadence is an Autism Assistance Dog Guide for Andrea’s daughter Bella. Kadence has become the 5th member of the Haefele household, giving Bella support, independence, and joy. Andrea and her family will be participating in the Purina Walk for Dog Guides on May 25th along the Harbourfront here in Toronto. Please read Andrea’s letter to Kadence below. In the past you have been beyond generous sharing Andrea’s story and raising funds, so I will ask you again to read, share, and please if you can donate. Bella playing with k 1Dear Kadence,

We’ve waited almost three years for you to come into our lives.  I can’t begin to tell you how thankful I am that you are finally a member of our family. I know that you’ve already been through a lot and have worked very hard to get to where you are today. From birth, you were exposed to different noises and obstacles to help encourage confidence and curiosity. You were then raised by a foster family who gave you basic training and socialized you to as many sights, sounds and smells to prepare you for your future career. When you were only one-year-old, you left your foster family to endure many assessments, and you were carefully selected to become an Autism Assistance Dog Guide. Since February, you were matched with our daughter Bella and have officially joined our family.

B and K for birthday at BV mall 1Our household is now filled with high-pitched screams of excitement every morning when Bella sees you. You’ve brought such a sense of joy and hope into our lives. Since becoming a mother, I’ve carried a lot of weight on my shoulders. I wake up every morning and go to bed every night worrying. When Bella was a baby, I would worry about why she wasn’t hitting her milestones like the other babies. I worried that she would never be able to walk. I worried that the doctors would never be able to provide us with a diagnosis that would explain why she was different. Now that Bella is 6 and in kindergarten, I worry if she has friends to play with at recess. I worry about her hurting herself because she does not walk steadily. I worry about her wandering away and getting lost because she has no sense of personal safety. I worry about her getting sick and enduring another seizure. I worry that I’m not doing enough to help her reach her potential. Most of all, I worry about her future.

One of the hardest challenges that I have faced as a parent to a child with special needs is having to rely on others to help my child because I can’t. Although as a teacher I help students on a daily basis to reach their goals and soar beyond their potential, there’s only so much that I can do for my little girl. I’ve had to learn to trust doctors, specialists, therapists, educational assistants, and her teachers to provide the tools that I don’t have to help Bella. Over the past years, granting these experts our trust has paid off because their training has helped Bella to learn how to walk and communicate with us with the help of visual aids and picture cards. We’ve worked very hard to get Bella to where she is today. However, I never expected to, one day, welcome the expertise of a four-legged furry creature who wags her bum, drools and passes gas unapologetically.

Bella loves her teeth on her handsWe are now on the journey of, not only embracing you as part of our lives, but entrusting you with our happy little girl. The trainers have told us that it may take up to a year until you meaningfully bond with Bella. Because she is non-verbal, I know it is challenging for you to read her and understand her needs. However, in just the few months that you have been with us, you have already learned Bella’s pace as she tiptoes while she plays, and stomps while she walks. You quietly lie beside Bella when she is in her IBI, speech and language, and physiotherapy sessions and provide her with the self- assurance and confidence that she needs. You tolerate her pulling and whacking on your tail because you see that it makes her giggle. You lick her hand because you know she likes the feeling of your teeth and your tongue. When Bella wakes up crying in the middle of the night, you’re beginning to check on her and turn Bella’s terrified cries into reassured smiles.

Kadence, I admire your work ethic, patience, and manners. As I load the kids into the car, you sit by my side until you are given the command to jump in. You always wait patiently for your food as Bella is learning how to place it into your bowl, and refuse your dog treats before we give you the command to go ahead. When other dogs bark at you for your attention, or when a squirrel runs across the road, you continue walking straight ahead because you know you have a job to do. I wonder if you’ll ever truly grasp the importance of your role, not only for Bella, but for all of us. We will never be able to provide Bella with the companionship and emotional support that you can. Nothing makes Bella’s smile larger than seeing you.

I look forward to witnessing your growing bond and seeing Bella thrive with you by her side. Now that Bella is getting older and taller, she is beginning to stand out when we’re out in public. I can see it in people’s eyes. They stare and wonder why she wants to lick everything, why she makes funny noises, why she spins around and around, and why she still wears a bib.

DSC00523Before you came into our lives, Kadence, I would sometimes feel self-conscious and carry an arsenal of tools to calm Bella down and to help her cope. We sometimes have to put her in a wheelchair for family outings to keep her safe. Now, with you walking by our side, I feel a sense of pride and comfort. The red harness that you wear is a poster creating awareness for autism and advocating for Bella.

People are now more open to approaching us with questions. Meaningful questions such as: How does Kadence help her? What do you need Kadence for? What kind of training did she have to go through? Does your daughter enjoy Kadence? I love how people have the courage to ask. We are working towards having Kadence go to school with Bella in September so that Bella can continue growing, learning and moving forward as you provide her with confidence, competence, and independence. Thank you, Kadence, for providing my daughter with laughter, companionship, strength, and courage. But most of all, thank you for being a friend to our Bella.

Sincerely,

Andrea

Although a dog guide is valued at $25,000, they are provided free of charge to families who apply for a dog guide (whether it be for the vision and hearing impaired, seizure response, autism assistance, diabetic alert, and other service dogs). The Lions Foundation of Canada is the founder and primary funder of Dog Guides Canada. Lions clubs across Canada contribute 25% of the revenue for the organization, so they depend highly on donations, sponsorship, and fundraisers. Every year our family has done an annual run to raise awareness for people and families who live with special needs. With the addition of Kadence into our family this year, we decided to do the Purina Walk for Dog Guides on May 24th at the Harbourfront in Toronto, Ontario. Please consider making a donation to help provide dog guides to other families. Donate here. For more information on Autism Assistance Dog Guides, please visit:  http://www.dogguides.com/autism.html

Guest Post: I Tri’d, I Duo, and we THANK YOU! by Andrea Haefele

You’ll remember back in April when I gratefully opened my blog to the writing of my friend Andrea Haefele who shared her story of her daughter Bella and their life with autism (read the blog post here).  Bella would soon be competing in a du-athlon and her family had submitted a video in the FilmPossible Film Festival.Here is an update from Andrea.

Thank you to our good friends Heather and Royan for sharing their personal blogs with us. Through social media, we were able to share our family’s journey with special needs. Over 1000 people have read our story and have shared it with their own family and friends.

We were astounded by the number of views of Bella’s video, created by the very talented Jesse MacNevin. With his talent for photography and videography, he was able to capture the joy and spirit of our beautiful Bella. With your continuous daily support, Bella’s video finished #1 with the top number of votes and comments in the Bloorview Filmpossible contest, making her a top 10 finalist placing 4th overall.

filmpossibleEven though we did not win the contest, we have triumphed in the positive feedback, shared stories, and new contacts that we have made by sharing a glimpse of our lives. For the past 5 years, my husband and I have been on a difficult journey. First with wondering whether our baby was developing ‘normally’, then in testing to obtain a diagnosis for Bella, processing the fact that she was developmentally delayed and on the severe spectrum of Autism Spectrum Disorder, figuring out the best tools and therapies for her to achieve the best of her potential, and accepting our daughter for everything that she is. Needless to say, it has been toiling, both emotionally and physically, as well as incredibly rewarding to witness each step that she has taken. No one knows what the future will hold. We constantly wonder what Bella’s life will be like: Will she be able to get dressed on her own? Will she be able to write her name? Will she have friends who want to play with her at recess? Will she ever tell me that she loves me?
All we can do as parents is give our kids our best, and help them turn their cant’s into cans.

On Saturday, May 31st, Bella proved that she could DUO! She participated in the Family Fun Fit East End Kids KOS Duathlon , and proudly ran 50 metres, rode her bike for 600 metres, followed by another 100 metre run. To our family this race was not only an extension of our passion for physical activity, but a great step in our pursuit to bring visibility to disABILITY.

Group shotIf it doesn’t challenge you, it doesn’t change you. This is what Bella has taught us. Since she was an infant, she was born with challenges. Despite these obstacles and the medical predictions and assumptions of what she would and would not be able to do, she has constantly surprised us with her abilities, from the time she took her first step to walk at the age of 2, to the first time she used her communication book to request for her favourite shaker.

When I stepped into the world as a parent of a child with special needs, I thought I would have to teach my child about the world. I thought I would have to focus my energy in teaching her how to sit quietly, play appropriately, and behave in a way that others would perceive as ‘normal’. I was wrong. It turns out I have to teach the world about my child.

By sharing our story, we hope that the next time you meet someone with special needs, you have a better understanding of that person’s struggles, but also of his or her accomplishments. We hope that, if you were to meet Bella, you would see a person who wants a friend to play with, who perseveres through challenges and never gives up, who radiates happiness with her ear-to-ear grin.

Bella and MomYes, “special parents” have it pretty rough. But, like all other parents, it’s not like we were given a choice. We just tough it through, each and every day, and have impressed ourselves with all that we can and continue to do… Just as Bella has impressed us with all that she can and will continue to do. I’m often asked how I find the strength to push on. The following quote provides the answer and truly embodies our family: “Children with special needs are not sent to special parents. Children with special needs make parents special.”

 

Guest Blog: Bringing Visibility to Disability by Andrea Haefele

Last year I was overjoyed to open my blog up to a post by my friend Andrea (read it here). She shared her personal story about her families mission to bring visibility to children and families living with disabilities in support of her daughter Bella who has severe Autism Spectrum Disorder. Bella was going against the odds and with families from the Birchmount Community Centre she would race her first Triathlon, she rocked it (read it here).  Andrea opened her heart in a way that was so real and authentic that I knew I had to share her story, I was touched by the strength of my friend and I knew you would be too.

A couple weeks ago Andrea reached out again. In the name of bringing awareness to children and families with disabilities Andrea has created a video of Bella’s triathlon experience and it is currently entered in the FilmPossible 2014 video contest given by the Holland Bloorview Kids Rehabilitation Hospital and she needs your votes! Please read below to learn more about Andrea and Bella, share this post, or simply click here and vote!

It is with great honour that again I share my blog with Andrea and I know you will be inspired by her and her family as much as I have.

I Tri’d, I Duo

jesse1Your child has Global Developmental Delay.
She is cognitively at a 12-month-old level.
I can’t tell you if she’ll ever walk or talk.
She should be babbling by now.
Her behaviour and play are not age appropriate.
She’ll likely be living with you even in adulthood.
She’s at the severe end of the Autism Spectrum Disorder.

There it is.

This is who my daughter is. This is how the doctors, developmental pediatricians, neurologists, geneticists, and therapists describe Bella. Every day I strive to try. But when faced with these facts, I often feel like giving up. A lot of people ask me: “What keeps you going?”

I’m still not sure how to answer that question. But if I had to sum up my answer, it would be: “I just do.”

In 2008, I married the man of my dreams. Peter and I stood over a beach in Cozumel, Mexico and made a promise to one another: “I do,” we said. We pledged to be loyal, to love, respect, and support one another through life’s trials and journeys.

jesse5In 2009, our beautiful daughter Bella was born. As a new mother and father, we welcomed this perfect little baby into our lives and said: “We do.” We promised to be the best parents that we could be.

In 2012, we brought our second child into the world. Little Petie filled our household with play and laughter. Bella, Peter, and I welcomed him into our lives and said: “We do.” We promised to put our family first and to do whatever we could to ensure that our children are as happy as can be.

The words “I do” mean more than just going through the act of something. To our family, these words are the rewards of trying.

Bella has been able to learn to do things that we weren’t sure she would ever be able to do. She is constantly trying… and doing! Through hours of weight bearing exercises for her muscles, exchanging picture cards to teach her how to make requests, hand over hand modeling, all of our trying has allowed Bella to DO. Our little girl is growing up and can now walk independently and use the stairs. She can go into her communication book to tell us which toy she wants to play with. When greeted by others, she now makes eye contact and waves ‘hello!’

Bella has Global Developmental Delay.
She will learn at her own pace.
She enjoys walking, running, biking and swimming.
Her communication binder is her voice. This is how she talks.
Bella is at the severe end of the Autism Spectrum Disorder, and sees the world in a different way.
She enjoys listing to music in her headphones, and is fascinated by the sun and shadows.
Bella ends every day by giving a kiss to her mom, dad and brother.
She loves a big hug.

There it is. This is who my daughter is.

jesse4Last year, Bella and her friends from the Holland Bloorview Nursery School participated in their first race and completed a triathlon. Together, 5 families of children with special needs gathered to bring visibility to people living with a disability. We demonstrated that wheel chairs, leg braces, and a lack of words do not define our children. Not only do they have the ability to swim, bike and run, they also have the ability to achieve anything they want to.

Last year, Bella tri’d and this year she will duo! We will be participating in the Family Fun Fit East End Kids KOS Duathlon on Saturday, May 31, 2014, as well as the Walk Now for Autism Speaks Canada on Sunday June 8th, 2014. To complete the Duathlon, Bella will be running 50m, riding her bike for 600m, followed by another 100m run.

For our family, this is more than a race. It is part of our journey to show that there are no limits to what one can achieve.

Together, we do.

Andrea

This year Andrea and her family are looking to reach even farther to share Bella’s journey and bring visibility to disability as they currently have a video entered in the FilmPossible 2014 video contest given by Holland Bloorview Kids Rehabilitation Hospital and they need your votes.

Please share your support by bringing visibility to all disabilities by voting for Bella’s video: http://www.filmpossible.ca/bloorview?id=1605389

Help us spread Bella’s message that there are no limits to what one can achieve.  Please share the above link or this post and help to create awareness and bring visibility to disability.