I recently spoke to the AGM of an organization which delivers educational and development services to children with disabilities. The organization is locally known as GRIT - Getting Ready for Inclusion Today. They are self described as "an exemplary, fully-inclusive, non-profit early childhood program for children with disabilities 2 ½ – 5 ½ years of age." While I tend to do a lot of public speaking (it comes with the territory in my line of work), it took me quite a while to figure out and put on paper exactly what I wanted to say.
I have read a fair bit of the literature on the topic of family dynamics situations where one or more of child has some form of disability. But this was more about my own personal experience, as a father who happens to have a child who lives with a disability. I'll not reprint here everything I said there, but I do want to highlight a few anecdotal items which I believe are important. These are the sorts of things one hears after the formal address is finished, over coffee, with other parents who are simply looking for a place to tell their story.
None of this is absolute, it is merely a pencil sketch of a few conversations, so let that guide your interpretation. First come the logistics. And by this I mean the countless extra trips to doctors, specialists, therapists, assessors, psychologists - you name it, and chances are your kid has had more appointments in a few short months than you have had in your whole life. Many times it is (in a 2 parent family) the mom who does this. And many times it is the dad who catches up afterward. He was at work perhaps, and simply cannot find a way to be there for these events. This has led in some instances to dad feeling disconnected, playing "catch up". From the perspective of the mom, it is doubly exhausting to have to retell the entire experience a second time. She has already heard once that Jane or John has this or that wrong, that nothing can be done for X, that her child will need extra work here or there. Many two parent families I spoke to that evening found this to be the case. Sometimes the dad will feel disconnected from what is happening and try to get more involved, more supportive. But sometimes the feeling of disconnect will result in a feeling of helplessness, and perhaps even further alienation from their child's life. This is only one small topic among many: how do fathers get more involved, more informed and more supportive? And most important of all, is there a place for them to simply tell their story.
I'll give the rest of talk & some of the feedback in bits and pieces over the next little while. A few days after I spoke at the AGM, we had a chance to spend a few days as a family at William Watson Lodge. It is a facility developed specifically to provide outdoor recreation for persons with disabilities and their families. It is set in a fabulous location: on the shores of Lower Kananaskis Lake in the Rocky Mountains of Alberta. Our second daughter lives with Down Syndrome, and so we "qualified" as a family to stay at the facility. For people with mobility challenges, there are some wonderfull accessible trails with amazing views of the Rockies. It really is a great place to spend a few days. We are hoping to get back there again next spring, or even during the winter for some X-country skiing & fireside laziness.