The Emotional Rollercoaster that is Autism Spectrum Disorder

Being a grandparent is wonderful. It is a role filled with joy and wonder. Seeing something from the eyes of a grandchild in many ways is better than experiencing it yourself, or even watching your own kids have the experience. However, when your grandchild is on the autism spectrum, the emotional rollercoaster can take unexpected twists and turns and leave you wondering if you meet all the requirements to be on this ride.

I am not sure I knew what real anxiety felt like before my granddaughter was in my life. Sure, like everyone, I had grappled with raising children, working full time, and the day-to-day stresses of juggling things like women do. But when she came along, I quickly realized all I didn’t know. I was all wrapped up in that special time of being a first- time Nana and the warm fuzzies that come along with that. I remember her coming home from the hospital and telling my daughter that all babies cry like that, that all parents struggle early on, that all babies don’t sleep. If only I knew then what I know now.

Sensory issues started early for my granddaughter and her developmental milestones did not mimic those of other kids her age. In some ways they were far advanced, and in some ways far behind. But we celebrated them all, nonetheless, as parents and grandparents do. Still, things were just not adding up. There were many meltdowns and many looks and comments of “you need to get that kid under control” when we left the house. Let’s just say, outings in public and my granddaughter had a tenuous relationship from the get-go.

There are so many emotions you feel as you wait to see if there will be a diagnosis for this child you love more than life itself. It came close to her 3rd birthday. I remember where I was when I heard the official diagnosis, autism spectrum disorder. I was at work. I still remember what the leaves looked like on the trees that day. I was sitting at my desk, looking out the window. Everything was green. It was summertime. The sun was shining. My tears were falling. I quietly left my desk and took shelter in an unused conference room. I still remember sobbing. It just wasn’t fair. I wanted it to be something that was easily fixed. Then we could move on. We could move on to our perfect life.

I don’t know why it hit me so hard. We had our suspicions. This shouldn’t have come as a complete surprise. But still, it felt like a complete gut punch. What would become of this grandchild I loved so much? Would she be able to find her place in the world? Would we be able to foster the same loving relationship with her that we have with our other grandkids? And also, how selfish is it to worry about my relationship with her when we have so many other things to worry about? There were literally so many things to worry about that I made myself worry lists. My emotional rollercoaster was more like an anxiety train and I just kept adding boxcars. And trust me, I get it. I am only the Nana. My daughter and son-in-law were amazing, but the worry on their end was palpable. From ensuring she had every learning opportunity, to fighting for services, they always pushed her unlimited potential, but with worry all over their faces. In all honesty, life looked different and that was hard.

Fast forward a few years. Eleven to be exact. Things look and feel much different now. We have a solid relationship, my sweet girl and me. Living with autism has most certainly presented its fair share of challenges, but it has also opened the door to new ways of thinking. My sweet girl has never allowed autism to define her. She defines herself. She is a beacon of light and has more authenticity than anyone I have ever met. She is the reason I give my time freely to this nonprofit.

What does the future hold? Who really knows! I’m doing my best to get off the rollercoaster and do positive things that make a difference for autistic individuals. Somedays it works and a few boxcars fall by the wayside. Other days things go lopsided and I drag my anxiety train down the tracks. But working to increase employment opportunities for neurodiverse people is a start. All I know for certain is that whatever challenges lie ahead, one thing remains constant: my unwavering love and commitment to my sweet girl. And her love for me. Together we are going to change the world. Come and join us. There is room at the table.

Until next time.