Nearly three years ago, all at once, my spouse and I became parents to three children, two of whom experience FASD. During the first year, we lived in an absolute dichotomous reality. The day was either good or, more frequently, hellacious. Nothing in-between.
On good days, activities were predictable, routines went undisturbed, modifications were simple, and demonstrations of emerging skills were abundant! However, in stark contrast, the more common hellacious days involved destruction of property, threats of violence and inevitably someone would experience a bout of elopement for several hours restricting all of us to the house for the rest of the day.
After the first few months of this, the good days were becoming less enjoyable. They were filled with anxiety and anticipation. My husband and I felt isolated and overwhelmed from one day to the next. It was increasingly difficult to maintain clarity of this paradigm that we spent months developing. We knew we needed help, we just didn’t know what to ask for or where to find it. Luckily, this is when we discovered respite.
The concept of respite was nothing new to me, but the value and form in which it could be delivered was a life-changing discovery. Initially, we didn’t find respite in the traditional, professional sense. We found it through family when we reached out to my sister who then began soliciting help from other family and friends. People started offering to come over for a few hours, or take one kiddo on a grocery run with them. These simple acts allowed us much needed time to regroup and feel like we weren’t in this alone.
Today respite for us takes on many forms; someone in our home for several planned hours, play dates with other kiddos who are at a similar developmental age, sending a kiddo to garden with my mom, having coworkers engage them in conversation or activities when they visit at work. Every little bit helps.
What I came to realize through this process, is that respite isn’t just something to apply for or contract with an agency to do. It is about building community and developing support; not just for my husband and me, but for our children. The more our community, our friends, our family are involved, the more they understand, the more our children can grow and the more we can have time to breath and focus on what really matters.
This post was written by Meghan Clark a Stone Soup Group Parent Navigator in Anchorage Alaska.
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