OUR SON NICHOLAS was three months old when we first visited the hospital emergency room. He was screaming constantly and unable to suck and swallow effectively, a situation that led to dehydration and malnutrition. When Nick was five months, he was diagnosed as having “severe neurological injury” involving cerebral palsy and possibly cognitive delay. He couldn’t tolerate sunlight or sudden, loud noises. We were entombed in our home; I stayed indoors with the curtains drawn and spoke only in whispers. Then, one day, I met a parent mentor who gave me the hope and inspiration I needed to mother my son—and in my book, I eventually wrote about this meeting as a defining moment.
KATHLEEN TO THE RESCUE
At that time, my husband, Jim, was on loan from Foreign Affairs to the Prime Minister’s office. He would rush home near bedtime to feed Nick, watching the news in his business suit while he held both the baby and the bottle. Word spread in our family about Nick’s “condition.” A cousin came over with a friend who had lived through a similar time. The friend’s business card read “Kathleen Jordan, Volunteer Consultant to Families with a Child with a Disability.” Kathleen had a son, 16 years old at that time, who had incomprehensible difficulties. Chris was blind, had cerebral palsy, Tourette’s syndrome and epilepsy. I started to examine this blonde woman in my living room. Her nails were beautiful; they were glossy red and perfectly rounded. I asked, “How is it you have time to do your nails?” I really wanted to know.
Kathleen had a huge pile of papers under her arm. She patted me and murmured, “I have some information here, but I completely understand if you want to look at it some other time.” “No!” I cried. “Give it to me now! All of it!” Years later, I heard the expression “cognitive lifeboat.” In that moment, I had found mine, and, gasping,
I climbed aboard.
Kathleen Jordan became my new friend and mentor. She helped to ease my way into a frightening new world of therapy, surgery, pain, laughter, pride and, above all, love. She assured me time and time again that it was all right to love my son. Somehow, I needed that permission—otherwise, I would have been paralyzed by fear. Parent mentors can be found in the park, at the treatment centre, at church or online. They can offer information, tips and tricks, but most importantly, these mentors or resource parents share a unique life experience that other family members or friends cannot understand. One parent blogger, Danielle, describes her online mentor relationships
this way in her blog “A Home for London” (http://ahomeforlondon.blogspot.ca): “I heard it all after I had London. Some advice was appreciated and some was not. Some was great advice and some was absolutely ludicrous. But none of it applied solely to my becoming a ‘special needs mom’ when London was diagnosed at about three months old. Suddenly nobody had any advice to give. Maybe they were scared to offend me at that point, maybe they understood that their little tidbits of good intentions had no merit in my new world, or maybe they simply had nothing to say, but no matter the reason, I was no longer bombarded with ‘oh just FYI…’ or ‘when my kids were babies…’ or even ‘recent medical studies show that…’
If you’re lucky, you’ll find a whole new family of other special needs moms. This will most likely happen online, as the Internet and social media will become one of your only connections to the world outside your bubble of insanity. These women won’t always know what you’re going through, but they’ll always be standing by with what is truly needed: not advice, but comfort. Of course, they’ll help you navigate through your stormy waters, but more importantly, they won’t be afraid to just talk to you. They’ll understand that you have a unique situation but they’ll also still treat you like you are your own person. They’ll know that, deep deep deep down, you still have ambitions, goals, passions and feelings. They’ll be some of the ones to see you through your darkest days. This family, as well as your blood family, will become the only group of people that you truly trust.”
The benefits of parent mentorship are not just proven anecdotally; the results of a 2002 Canadian study revealed that the effects of belonging to a parent-led parent support group were substantial. Evidence showed
that through these groups, parents gain increased skills and a better sense of power and belonging. Participants are able to connect with each other and learn support and skills to deal with the day-to-day issues of raising a child with disabilities.
PARENT TO PARENT
At Holland Bloorview Kids Rehabilitation Hospital in Toronto, the Family Resource Centre is the heart of family support, including mentoring. The centre hosts a family leadership program that offers parents an opportunity to teach, support and share with others. Mentoring is an important aspect of the program, but no direct parent-to-parent matching is involved. It occurs formally in the family resource library and clinic waiting rooms (where parent mentors are available to answer questions), and informally online in “Parent Talk” (a bulletin board format), as well as on the resource centre Facebook group titled “BLOOM.”Holland Bloorview offers Patient Talks that include networking opportunities for parents to naturally gravitate to peers for support. There is a monthly outpatient group and a weekly inpatient parent group. In partnership with the Autism Treatment Network, there’s also a monthly group for parents of children with autism. Those events include an information-based presentation followed by an opportunity for parents to network and share their personal experiences. Holland Bloorview mentors are trained in groups where they are given information on the range of resources available at the centre, but they are also advised on the boundaries of appropriate communication with families. For example, mentors would never make treatment recommendations. When family members approach a mentor with a goal of information gathering, the conversation often evolves to a deeper level of shared experience.
Laura Williams, the Family Resource Centre’s manager, identifies the benefits of mentorship this way: “Parents feel a sense of relief knowing that there are others who share similar challenges. As well, mentoring helps to normalize the family experience by sharing and validating stories of daily life. Mentoring reduces isolation and there is support through laughter and stress reduction. There is empowerment through gaining and learning knowledge and skills that will help the child.”
But mentorship doesn’t benefit only those on the receiving end. Becoming a mentor by reaching out to a younger and less experienced family can give meaning and validation to one’s own life and family experience.
MATCHING AND MENTORING
In other situations, peer support from veteran families specifically connects parents with like-minded situations and concerns. Oftentimes the lead organization hosts a series of fun family events, presentations, workshops or training sessions as well as phone and online introductions. Some programs are more formal than others. Simply put, the goal is usually the same: emotional support and access to knowledgeable parents, who have, as the Waterloo Region Family Network suggests, “been there and know from personal experience the challenges and special joys that come with parenting a child with a disability or chronic illness.”
Donna Thomson is the parent of a young man with complex disabilities, and the author of The Four Walls of My Freedom (McArthur and Co., 2010). She teaches families best practices in advocating for care through her interactive workshop, “How to Know what You Want and Get What You Need” for the Advocacy School (www.advocacyschool.org).