Parent to Parent

The days when my first children were young were happily filled with playgroups, spending time at the park and meeting other young mothers for coffee at McDonald’s while our kids romped around in the ballroom. My two boys, two years apart, were healthy, developing as expected, playing well with others and relatively easy to care for. The social interaction with other moms gave me lots of opportunities to exchange information. If I was concerned about something, another mother would have already dealt with it and have some sage advice.

When our sons were five and seven, I became pregnant again and was pleasantly surprised to discover we were expecting twins. Aaron and Taylor were born after an uneventful pregnancy and birth. As time went on, though, we noticed that they were not meeting some of the early developmental milestones, and they required an unusually high amount of hands-on care. We expressed our concerns to our family doctor and were referred to the local children’s hospital for a child-development assessment. That assessment resulted in a diagnosis of developmental delay.

According to the American Association on Intellectual and Developmental Disabilities, a developmental delay is characterized by significant limitations both in intellectual functioning and in adaptive behaviour. It’s a definition that’s difficult to quantify. Our sons lack of speech and motor skills prompted us to proceed with occupational and speech therapy. We began to look into the realities of developmental delays and discovered that they can cover a wide spectrum of abilities. Often, as it was in our case, they are accompanied by secondary syndromes, which can make two people with the same general diagnosis seem quite dissimilar.

As a former journalist, I had the advantage of being adept at doing research. I threw myself into investigating the topic of developmental delays. The Internet provided a convenient way of doing research at home, but it was far from simple. There was a great deal of information for specific disabilities, such as autism spectrum disorder and Down syndrome, but the more general diagnosis of developmental delay made finding information more elusive. I agonized over where my energies were best spent as I discovered that developmental delays often fall through the cracks when it comes to securing funding and support.

The intellectual and behavioural gap between Aaron and Taylor and other children their age grew. Playgroups, recreational activities and coffee dates were either unmanageable or too mentally and physically exhausting. I also realized that the time I had spent with other mothers was far more than just socializing. I had taken a great deal of comfort from the shared experiences, the possibility of dropping the boys off while I went to an appointment, and the freedom to shop, visit and play. That support network wasn’t as accessible to me anymore. Many of those friends were, naturally, moving on to new stages with their children. Along with significant intellectual delays, Aaron and Taylor were, by this time, having social and behavioural difficulties. Supportive as friends were, we felt it wasn’t fair to any of us, least of all the boys, to schedule outings that included having to explain, mediate and intervene on a regular basis. As I look back now, 10 years after their diagnosis, I remember those days as the loneliest and most isolated time of my life. I vividly recall the feeling of helplessness.

The Internet, medical professionals, and speech and occupational therapists replaced my friends as mentors and sounding boards. I spent hours researching educational options, life skills strategies and behaviour management. I discovered that it is generally through word of mouth, referrals, personal research and lots of hard work that parents find the required services. Unfortunately, the time and energy required to cope with the boys day-to-day needs made this very difficult.

We were so immersed in caring for Aaron and Taylor that we had little energy left for anything else. The boysÕ psychiatrist pointed out that serious health issues can develop if stress is not alleviated. It was imperative, for the sake of our whole family, that we get respite. We got information about agencies and support programs that could provide occasional weekend and week-long respite for the boys. It was during these periods that I realized a desire to return to writing. My interest in news and feature writing, however, was replaced by a desire to tell our story. I felt that sharing our experiences with other parents might make their journey a little easier.

I enlisted the help of Kathy Corcoran, a friend who shares my love of words and communication, and was well aware of our situation. She also has four children, including twins, and she was happy to do some editing for me.

Parents of children with developmental disabilities must frequently advocate and lobby for the best placement to suit their children’s needs, and often it feels like they are starting from scratch.

There are organizations devoted to serving the developmentally delayed community, such as the Ottawa-Carleton Association of Persons with Developmental Disabilities, but there is little in the way of an electronic connection to the community to assist parents, or to connect families to each other.

Aaron and Taylor are 13 now, and our journey continues to present us with many challenges. Our sons have faced a great deal of adversity, and we have had to search far and wide for information and support.

In conversations with other parents, I realized that it would be helpful to have somewhere our concerns could be addressed. The idea of a website dedicated to the parents of developmentally delayed children was born. Kathy and I recently launched www.raisingDDchildren.com, for parents to gather and share information and for relevant agencies to provide links to their services.

We hope that when parents receive their child’s diagnosis, they will not drown in the helplessness that I felt years ago. Through this website, we can support and encourage one another.

Darlene Macdonald and Kathy Corcoran are writing partners living in Kanata, Ont.