The following is shared with permission from Easterseals staffer Shari MacFarlane, who is more importantly an extraordinary mom of two children with autism, a devoted special needs advocate and a skilled case manager within Easterseals Autism Center of Excellence. Shari shares her thoughts with our President/CEO Bev Johnson in response to Bev's "Daily Tip" sent to Easterseals employees with daily updates, motivation and positive thoughts during this pandemic. Shari's perspective is a good reminder for even those who work on the front lines of the special needs community. May we all "get back to normal" with a deeper understanding.
“I have been reading your daily tips, I felt the need to share a little perspective. You have done a great job of keeping everyone focused on the recovery side of things, not losing hope or getting too caught up in this moment of distress because it will pass. But what about those of us for whom this moment isn’t just a moment?
With all the talk from all directions about families feeling trapped at home, how hard it is to keep up with your kids without school and the social isolation that comes with 24/7 life at home, there is very little discussion about how this is the life of a special needs family most of the time. My life has changed very little as a result of the pandemic, other than working from home which has actually made things easier.
With complex medical challenges, we have always been a little “germaphobic”. Three developmental regressions due to various viruses over the years and many flares of PANDAS makes me want to put my kids in a bubble every cold and flu season.
With autism, we don’t get to participate in many of life’s social activities and milestones. Most self-contained ESE kids do not get to participate in the lower grade graduations or field trips or really anything else that many people think of as a “normal” school experience. And dinner out with friends, that takes an act of Congress to happen, especially if the friends are also special needs families. Even shopping in a store is challenging, which is why Amazon loves me so much.
From my perspective, everyone has been getting to walk in my shoes just a bit. Maybe now others can have a glimmer of understanding of how truly challenging being a special needs family is all the time, not just for a month or two. To all the people saying they can’t handle this any longer and can’t wait for life to be back to normal, this IS my normal!
I know there are many special needs parents feeling the same way. Since we have many of them coming back for therapy and summer programs, maybe this is a golden opportunity for our staff without special needs kids at home to realize a different side of things. I don’t want anyone to feel sorry for me or any other special needs family, I honestly didn’t realize just how different our lives were until this all happened. For me, this is about inclusion once our society starts opening up again. Inclusion starts with an understanding of how much someone has been excluded and marginalized all along. Our programs are inclusive, but sometimes each person’s attitude or expectations are not. Our families would probably appreciate some extra patience and support because they are worried about the lost progress from the past 2 months, the mental health toll on the parents and the kids, the loss of supporting programs, friends and family due to social distancing, not to mention the physical health of their fragile child now that other people are not being so cautious with their behavior. And that’s on top of all the other worries we are all experiencing.
We have wonderful, compassionate people working for Easterseals, now is our chance to really show that off.”