A Moment of Inspiration - You are not alone!

By Maureen Marsh

Just like everyone else, if you had told me ahead of time what was going to happen in the year 2020, I would never have believed you. The events that have unfolded will be scrutinized and discussed in history books, and yet here we are, living it in real-time. There isn’t a single person that hasn’t been affected in some way, and the overarching theme has been loss: loss of loved ones to a novel virus, loss of jobs, loss of relationships, loss of security, and loss of faith. I can’t help but think that the way the collective population is feeling right now is simply how the special needs community feels all the time. Even though we are perhaps the best equipped to deal with things like health scares, disappointing cancellations, and altering every facet of our daily existence on a moment’s notice, we are also the most vulnerable and have the most to lose.

I have read the comments on social media from parents of typical kids all year long, and the initial isolation was understandably very difficult for them, but for many of us, this was nothing new. When my now 8-year-old son was a toddler, his sensory issues were so severe that we could scarcely go outside at all. The sound of cars, airplanes, and sirens sent him into overload and he was inconsolable for what seemed like forever. He was also nonverbal and immobile far longer than his peers, so the children around us grew bored with him or didn’t understand how to play with him and his frequent meltdowns were off-putting to the children and parents alike. We played inside alone a lot for many years. I was reminded of a post I shared in one of my many special needs Facebook groups a few years ago, a group based in the United Kingdom with members all over the world. I rarely contribute as I am more of a lurker these days, but I was having a more difficult time than usual and wrote the following:

July 6, 2016 “My son is 4 but developmentally is about 18 months. This causes him difficulty in playing with other kids. It is the peak of summer and when I looked out the window yesterday and saw all of the other kids on my street gathered next door with their little bikes and tricycles, it filled me with such an enormous sadness it literally took my breath away. The good thing is that my son seems to have no awareness of any of these differences, but it still hurts me and I had myself a good old-fashioned pity party. Anyway, it felt so weird to feel so sad on a sunny summer day. Just needed to vent. Thanks.”

The responses I received were overwhelming. Dozens of other parents commented and shared their own stories of isolation and grief. One described herself as the “lady in the window,” always watching from inside to the outside. Another remarked that she had heard this called the Chronic Sorrow, a condition shared by parents of children with disabilities. I cried as I read through the comments, at once relating and feeling empathy but also relief that I was far from alone.

This year entire nations are being asked to wear masks, but we have been wearing masks long before the pandemic. We put on a happy mask for co-workers, family, neighbors and friends. We put on a calm mask to quell an agitated or overstimulated child. We put on a strong mask when we are talking to a medical team or educational professional and advocating for our loved ones. We put on an alive mask when we are dying inside. My son got off the school bus on Friday, March 13, 2020, and as of this writing he has not returned in person to school. He does not have the capacity to understand exactly why and does not have the ability to express complex feelings about any of it. It may be years before we know the full impact this has had on him, let alone ourselves. Some in the special needs community were already hanging by a thread, and the thread has stretched even further in 2020.

I am grateful for the online community now more than ever as it has been a lifeline in this storm. We have cultivated the skill set necessary to weather an epic event, and I feel we have a lot to teach others about how to survive. The biggest shift, however, is in how people outside our community are suddenly in tune with our struggles. When we say we have been isolated for months, that has a real and tangible meaning to families that had no previous experience like ours. When we talk of our crippling anxiety, or PTSD as it relates to hospitalizations and medical issues, we are now relatable in a universal way. For all of the terrible things that have happened in 2020, one positive thing may be that the gap between our worlds has closed a bit. I am cautiously optimistic that this will translate to a greater awareness in the future of the specific struggles of families with special needs. For now, I hope that anyone experiencing the Chronic Sorrow has the strength to reach out and to ask for help, even if it is just to a group online; to stay connected, even if it is virtual; and to do the small things that bring joy and peace. Above all, know that whatever you are feeling, you are not alone.

Calling all individuals with special needs,

parents, grandparents – If you would like to share some inspiration with the community or nominate someone else to be in an upcoming issue of Special Needs Living, email us at SpecialNeedsLivingIndy@n2pub.com.