By Colleen Sell | Meet Extraordinary GRAND Janet Harrold — talented artist, passionate advocate for children with special needs, and devoted grandmother of two bright & beautiful grandchildren, one of whom has cerebral palsy. |
As the editor-in-chief of GRAND Magazine and as a grandmother and hopeless romantic, I am drawn to stories of “ordinary” grandparents who do extraordinary things to make the world a better place, especially when the beneficiaries are children. So, when I discovered Janet Harrold’s Painting for Hailey blog and Facebook page, and her beautiful artwork, and the work she does on behalf of children with special needs, I had to know her story and share it with you. I hope you find my interview with Janet as inspirational as I did.
Tell us a little about your career as an artist.
Ever since I was a small child, I’ve had a creative pang inside me, from drawing murals in the halls of my high school to painting the Peanuts gang on my nephew’s bedroom wall to, more recently, writing sweet sentiments about my beautiful granddaughter, Hailey, highlighting the valuable lessons and the pure joy she has brought me and taught our family in such a short period of time.
Growing up in Boston has been a constant inspiration for me. I love to paint the brownstones in the South End (especially when the dogwoods are in bloom), street scenes, traffic lights, umbrellas, and most of all, people. I love to paint the human figure and all of its quirky imperfections.
After twenty years of learning and creating art, I am proud to be the author/illustrator of the children’s book ABCs Flowers and Trees: A Walk in the Public Gardens.
Like many artists, you have a full-time job, around which you squeeze in your art and advocacy work. Tell us about your “day job.”
After 25 years as a floral design manager, I recently shifted positions within the company. I am now maintaining and keeping our website current, editing photos, blogging regularly about flowers and posting to our social media outlets. (Finally giving my back and feet a rest.)
When and why did you become an advocate for children with special needs?
Probably without knowing it, immediately after my granddaughter, Hailey, was born with athetoid cerebral palsy.
What is athetoid cerebral palsy? And how has it affected Hailey?
To paraphrase About-Cerebral-Palsy.org: Athetoid cerebral palsy is caused by damage to areas of the brain responsible for processing the signals that enable smooth, coordinated movements. Involuntary movements often interfere with the child’s speaking, feeding, reaching, grasping, and other skills requiring coordinated movements. Children with athetoid CP often have low muscle tone and problems maintaining posture for sitting and walking.
Unfortunately, Hailey faces many of these difficulties. She uses a wheelchair and is considered nonverbal; her physical challenges are many.
What was your initial reaction to learning Hailey had CP?
Hailey entered this world in such a traumatic way, we knew she had suffered brain damage, though we didn’t get the diagnosis of CP right away. We found ourselves in unfamiliar territory, as if someone had knocked the wind out of us. We were shocked, scared, in disbelief, and confused. Our priorities shifted, and our lives changed forever.
What do you know now that you didn’t know then about having a grandchild with special needs?
When something like this happens in your life, to your family, to your precious baby girl, the first thing you do is ask why. It was the most helpless I’ve ever felt in my entire life. I couldn’t help my only son; I couldn’t help my sweet grandbaby.
The next thing you do is to become proactive and learn how you can help. I was desperate for answers, and the doctors were vague. I turned to the Internet, looking for articles and resources, stories about other children who were born with CP and the daily challenges they faced. As important as it was to talk with doctors and learn their textbook answers, I thought it was equally as important to talk with others who were actually living the life. I spent countless hours in the middle of the night emailing a conductor of conductive education who lived in Germany but spent years in Budapest learning and working with others with CP. She was the most insightful. She must have answered hundreds of my questions with patience and understanding. Bless her.
Aside from their many medical needs, what children with special needs need more than anything is love, patience, and friendship; they need to feel included and worthy. If we could all teach our children and grandchildren to be kind and to befriend someone who needs a little bit more attention and understanding, it would make a profound difference in someone else’s life as well as their own.
Tell us about Painting for Hailey.
Children with cerebral palsy need additional help and equipment and alternative therapies and education, many of which aren’t covered by medical insurance. For example, one of the programs we wholeheartedly believe in is conductive education (CE). However, there are few CE centers in the country. In order to attend this program, we needed to travel out of state for a four-week session whenever we could. Traveling expenses, lodging, and tuition quickly added up to thousands of dollars. That is why I started Painting for Hailey—to create and sell paintings to help cover those expenses, and to blog about it to help raise awareness of CP. For example, many people do not realize that CP is not a disease, nor is it progressive, degenerative, or communicable.
It was doing something I love to help someone I love.
How else have you advocated for children with special needs?
I advocate wherever and whenever I can, whether by selling or donating a painting, or writing an article for Something Special Magazine or a blog for Exceptional Family TV, or volunteering at Bina Farm [therapeutic riding center]. Whenever I can raise awareness or help others in need, it’s a good day!
How old is Hailey now, and how is she doing?
Hailey is 6 years old and wonderful! She and her family now live out-of-state near the CE school, where she continues to thrive. Her hard work and determination make her a stronger person than I could ever be. She is a happy little girl with an amazing smile that could light up the entire Boston skyline at night, and for that we are blessed. Hailey is the apple of Grammy’s eye, the beat of my heart. I love her so much, deeper than I ever thought possible.
Do you have any other grandchildren?
I have a darling 2-year-old grandson, Brody, Hailey’s brother.
Is your role as the grandmother of a child with special needs different than your role as the grandmother of a child without special needs?
I believe our first role as grandparents is to love our grandchildren unconditionally, so in that respect, it’s the same. Hailey’s needs are far greater than her brother’s and always will be, and for that reason (not favoritism) she absolutely gets more attention.
What are the most rewarding and challenging aspects of being a grandparent?
My husband and I do everything we possibly can to stay involved in their lives, we believe that grandparents play an important role in the lives and upbringing of their grandchildren, and we are blessed and honored to be able to have that kind of relationship.
For me, every day that Hailey is here is a reward and a blessing. After such a rocky start, I never take her life for granted. Hailey fought to stay in this world, and we count our blessings everyday. The most challenging part for me is to watch Hailey struggle with her physical disabilities, but I find comfort in knowing she is a very bright and happy little girl. She has brought lessons to the table that no doctor or educator could ever teach us.
As for Brody, he is a reward and a challenge all rolled up in one. At the very young age of two, he understands his big sister’s fragile needs. He helps to feed and clean her, and he climbs on things to get at whatever it is she can’t reach. But that doesn’t stop him from being the devilish little boy who steals her water or her baby doll when she’s not looking.
What advice would you give to other grandparents of children with special needs?
Extraordinary and unfortunate things happen to ordinary people every single day. If you have a grandchild who is born with special needs, it’s going to be okay. Pull the light from her eyes and the warmth from her heart, and they will guide you and give you the strength and courage you will need to go forward on this unwanted and unexpected path. Above all, enjoy her. Through all the therapies and doctors’ appointments, don’t forget to take the time to enjoy her to the fullest. Never, ever give up hope!
How can we all advocate for children with special needs?
By you reaching out to me, you’ve given me the opportunity to not only let people into our personal life but also to advocate for so many others with CP and other special needs. It is publications and forums like this one that I so desperately craved when Hailey was born, so I would like to thank GRAND for this interview, and I hope it reaches or affects at least one person. I am quite sure there are many other grandparents out there who need to be educated and who simply need to know they are not alone in this. When a child is born with a disability, whether it be a physical or mental disability, it not only affects that individual, it affects the entire family.
The best way to advocate for children with special needs is to get involved. Be the difference in someone’s life by playing active roles in advocacy. If writing is your strength, spread the good word wherever you can. If you can volunteer, please take a few hours a month and rock the babies at your local hospital’s neonatal intensive care unit (NICU) or assist in a therapeutic riding program for people with disabilities. Donate money to programs such as those and so many others. Maybe you are not physically capable or financially able to make a monetary donation; something like getting involved with Facebook groups that support special needs programs and reposting their inspirational quotes can act as a simple contribution. Every little bit helps. Just do something. Anything will make a difference.
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Colleen Sell, editor-in-chief of GRAND Magazine, has six fantabulous grandchildren, ages 5 to 25 years, and an adorable new great-grandson.
If you liked this wonderful article on Janet Harrold, be sure to check out more stories by Colleen Sell.