Raymond F. Currie is a Winnipeg resident and author of the autobiography Secure and Uncertain: A Father’s Story.
As anyone with children can tell you, they determine your social networks. Young parents with babies interact as their single friends inevitably fall into the background. As the children grow, neighbours with young teens anxious to earn a dollar as babysitters lead to more neighbourhood interaction. Hockey, ringette and soccer parents form links with like-minded young families. Work-related links develop as long as young children are in the mix in both homes. Church, synagogue or mosque connections may survive if they exist. Relatives, especially cousins can become even more important, especially if some have children. They can be playmates, babysitters or safe havens.
But what if your children have disabilities? How does that affect the networks? Every single existing network is now subject to just one criterion: Will your children be accepted as they are? No mean feat.
It took us some time to come to the realization that we would have to change far more than our children would. Networks without the children are problematic in such a situation. Finding appropriate babysitters can be a huge challenge. Team sports may be out of the question, with the exception of the Special Olympics in some cases. But even then, the needs of the children may take so much time and energy there is little left to interact with other parents in the same situation, who would be understanding and supportive.
Our experience at church was a turning point. Our son, who has fetal alcohol spectrum disorder, was acting up as usual. FASD does not allow for predictable behaviour. After a reprimand from the parish priest for the disruption, we posed the question: “Would you rather we did not come?” He did not understand the nature of the disability, and while his apology was no doubt sincere, the dye was cast. Another network was ticked off the ever-shorter list.
Gradually, friends were lost. It was not so much because they did not want to be supportive. The stress on us to make the get-togethers work cost too much. The frequent interruptions and disruptions, right in the middle of what we thought were wonderful evenings, took their toll.
This is not a “feeling sorry for myself” reflection. Not at all. It is simple reality. It’s true that there are multiple organizations to assist families who have children with disabilities. Having two children with quite different disabilities made participation in such organizations more problematic. We were so busy extinguishing the fires, searching for positive experiences for them, that we did not have time to attend the “support groups.”
Does it mean we regret adopting our children? Not for a nanosecond. They are our children. We can’t imagine life without them. Like any family, if they have given us heartaches, they have also given us much joy. They have taught us, as all children do.
In the past, I sometimes felt depressed when we received Christmas letters bearing endless wonderful stories about the successes of offspring. That ceased to be an issue long ago. We adjusted. Instead of focusing on the limitations of our children, we try to celebrate their achievements. And while our networks may be smaller than we might wish, there is a silver lining: We have been introduced to other individuals who are part of incredible communities of caring. “One of the good things about being in need,” my wife once reflected, “is that you meet such wonderful people.”