AT HOME WITH
Imagine the experience of a family dealing with a child being hospitalized. Typically, kind-hearted individuals offer to care for the other children so the parents can spend time at the hospital with the one who is ill. Meals are brought to their house. Kind and positive thoughts are expressed. Overall, the network that surrounds the family will reach out to offer support and help through the time of need.
What happens, though, if instead of this being an intermittent and very tangible experience, it is something you lived with every day? For years? Even the best support network would struggle to sustain this. Parents of children diagnosed with autism live this way.
They will often feel isolated. Couple that with sibling resentment, the financial burden of therapies, simply finding therapies and therapists who work with the child, special education and education as a whole, concern about the future, marital conflict and concerns about other people’s perceptions of your family, and it becomes one big, nasty ball of anxiety that would paralyze most people. This one aspect of your life takes over your entire life. Your hopes for your future, your needs and your sanity all seem irrelevant when you are living moment to moment, waiting for the next explosive behavior.
So, in the face of what seems to be a never-ending crisis – with multiple mini-crises along the way – how do you meet the needs of your other children, your spouse, and, lastly, yourself? I like to imagine a garage, and where you park the problem in this three-car garage will define how you are going to respond to it. Garage One is for Plan A and includes things that are nonnegotiable; Garage Two is for Plan B and holds the things that are going to be defined by you and your family; and Garage Three is for Plan C and is all the things that you are not going to even worry about.
For my family (my youngest son, Michael, has multiple disabilities that land him in the hospital often), we originally parked in Garage Three by eating dinner at home when he and Mommy were in the hospital. I treated it like an adventure for my other three children. We would go out to eat at restaurants that “Mommy would never let us go to if she were here!” – which pretty much meant barbeque joints. But, after three days of eating out, Plan C was no longer appropriate (nor desired by anyone). So, we came up with a Plan B and changed parking spots. We would eat at home but would get out TV trays and have a “picnic” while watching a movie in the living room. When Michael and Mommy returned home, dinners at the table are no longer Plan B’d and moved back to Garage One and Plan A, where we all sit at one table and eat together.
The one thing that makes this easier is thinking ahead of what things you can “Plan B.” So, if your child impacted by autism is refusing to eat anything but chicken nuggets you can either “Plan A” it and serve only the meal prepared for the entire family, “Plan C” it and only make chicken nuggets for dinner for the entire family or “Plan B” it and keep a stockpile of chicken nuggets that can be prepared if the original meal is refused (or serve the meal you prepared along with the chicken nuggets from the very beginning).
Once the crisis is over, or at least subdued for the time being, you can reassess and decide where you want to park. This constant flow between plans (and parking spots) allows the responsiveness to manage during the crisis and come back to some sense of normalcy when the crisis is over.
(This is very loosely based on Dr. Ross Greene’s Collaborative Problem Solving approach introduced in his text, The Explosive Child)