Autism Awareness Month

           April is Autism Awareness month and I thought I would share how this disease has affected our family. My cousin, Cheryl, has a daughter, Tori, that is autistic. Autism is more prevalent in boys, but when it manifests in girls, it’s usually more pronounced. That is the case with our Tori. Cheryl is an extraordinary mother. She doesn’t think so, but trust me, she is special. She has done everything to help Tori get to the level of functioning she is at, and they aren’t done. Its endless therapists, teachers, vitamins, supplements, special diets – you name it, they are working it, and they have been early on in Tori’s development. Cheryl and I are both Caregivers, but in different ways, and something we talk about is how, when you are a Caregiver, you are always “on.” Always in first responder mode because you never know when a problem is going to happen and you have to be ready to react. There is never down time and you never get to relax.

                I used to manage a systems support team for a large hospital chain (43 hospitals!) and I had to put together the “on call schedule” which basically listed the responders in the event there was a system issue off business hours. We were a small and lean team, so the analysts were on call often. They hated it. I didn’t get it. In my mind, since it was so rare that they were actually called to duty when on call, I didn’t understand why it would be an issue for them. They explained to me how they always had to plan ahead to be sure to carry the work phone and have the laptop available and be close to Internet connectivity and that planning was a real kill-joy on weekends with the family. When I became a Caregiver, I got it. You’re always on duty.

                I was lucky in that there wasn’t too many times where my Gramps fell or we had real issues resulting in my getting a call. Regardless, I was on-call 24 hours a day, 7 days a week. Just worrying about when I was going to get that call was always present, weighing on my mind. It was heavy.

                It would be easy for me to tell you not to worry, to relax, and live in the present rather than spend time “futureing” and worrying about getting “the call.” You can work on trusting that your loved one is safe, and replace negative thinking with reassuring thoughts that it will all be okay. I don’t know what will work for you to not carry this heavy weight of worry. I can tell you this from experience, and that is simply, odds are that your worst fears will never happen and it really will be okay. If you do get that call, you will manage. You will figure it out and deal with whatever you need to work through. It will be okay, trust, have faith, believe, and do what you need to do to make sure your loved one is well cared for and safe. That is all you can do, and all you need to do.