Friends, meet Jessica. We met over 15 years ago as teenagers, bent on changing the world for the better. Over the years, we have remained dear friends and are happy to have sons just a year apart. Last year, Jessica’s youngest son, Simon, underwent a long process of therapy and testing which finally culminated in an autism diagnosis. I asked her to share Simon’s story here. She graciously complied. In a conversation last week she said, “Could you imagine someone telling us all we would encounter now, 15 years ago? We wouldn’t want to even open our eyes to the future. Yet here we are and we are thriving!” And that is why I wanted her to share. Life keeps going. We are stronger and braver and bigger than our diagnosis, disease, and dysfunction. We have access to hope and healing, even if we have no cure (yet). I’m proud to call this woman a friend.
Its been close to four months now since D-Day: the day we received the package. A package full of the numbers, paragraphs and codes. The package that labeled my dear son Simon as a boy who was autistic.
I was expecting this, but I was not prepared for the avalanche of emotion that followed, seeing it all in black and white on crisp smelling paper. The heavy blue folder filled with advice on teeth brushing, sensory processing, oh and a list of lawyers to contact should our school district not be cooperative.
What is NOT in the big blue folder is how to handle your relationships. How to talk to people you know as well as strangers about your sons neurological differences. Nor was there a guide titled “Emotionally Processing Your child’s Diagnosis and Letting Others Know How They Can Be There For You”.
One can find a million articles on autism and plenty of them start with the “37 Things You Should Never Say to a Parent of an Autistic Chilld”. I struggle with these articles, not because the content isn’t true, because it leaves people feeling paralyzed and fearing they will say the ‘wrong’ thing. So, they either avoid the topic all together in order to avoid saying anything hurtful or, perhaps, say nothing at all.
After doing a bit of self care in the last few weeks, I was truly blown away by some of the truths in Brené Brown’s research on vulnerability and especially, how Empathy helps propel us into relationship and away from shame.
With much of this truth, in addition to realizing how I personally process grief, I can look back and tell you exactly what I needed in this time. I needed a cozy, safe space where nothing I said, or felt, was perceived as wrong and held against me. A space where I could scream, freak out, ask “why”, followed by more crying. In this space, the nights would feel long and dark and alone. This space is grief. It is real and evolves each and every day. Some days laughter comes back for a moment only to be followed by more tears. Eventually, the tears flow less and less frequently.
“To every person walking through a major life-changing situation, you need to allow this space in your life to exist.”
To everyone else who is watching from the outside looking in, you need to simply choose to sit in that space with that family for a moment. There is no need to fill up this space with empty works. Simply let them know that they are never alone. It can be liberating to acknowledge that nothing you can say verbally will change the grief and trauma they are experiencing. Instead of filling space with words, YOU simply hold the space and share it with them.
On our way home from the Cleveland Clinic with that big blue folder on my lap, my husband and I cried and remained quiet without any music playing as we drove. We let the silence and sound of our tears be our song. We pulled into the driveway to find our fantastic neighbors in the driveway. They knew the diagnosis was possibly coming that day, and not even a minute out of the car they were there with open arms and tears to match ours. They listened to the few words I could utter and instead of filling the air with ‘I’m sure it will be fine….or my nephew is autistic and doing great…’ They chose to inhabit the space with us and be in it too.
An hour or so later, we’re trying to just get back to our day and a friend had told me she wanted to bring something by. Truth be told, I wasn’t up for any visitors but something in me also really wanted her there. I knew she was coming clear across town and she pulled in the driveway and when our eyes met, it was like she understood what we had just underwent. Her hug was compassionate and gracious. She also did not fill the air with ‘Gods got it under control….everything will be OK…’ because she wasn’t actually certain of anything in that moment. What she DID do was hand me a six pack of beer for Joel…fruit snacks for my kids and flowers for me. She also handed me a card and it wasn’t filled with words of empty flattery or ‘Only special Moms get special kids…’ – what it was filled with was ‘You are not alone. We love you.’ She joined me in my space. She brought a little light in.
I could go on about the beautiful conversations, hugs and acts of kindness sent our way upon, during and before Simon’s diagnosis. What I am most grateful for is those who chose to sit with us, look us in the eye, wipe our tears and cry a few of their own. If you’re unsure on how to be there for a friend who is going through something you do not fully understand, just go and be with them or practically love on them. It is as simple and dropping off a coffee or a little bouquet of flowers and a hug. Never under estimate the power of a hug.
In four months, we may have a gained a diagnosis that will likely effect Simon forever. We have also gained a support system of Grandparents, teachers, therapists, and a new found surge of power within my husband and myself. This gives us courage on hard days and helps us see the progress. Even progress many would regard as trivial, is a big deal for Simon. Simon is growing, learning, and understanding more of his world every day. Ultimately we are so grateful to all who have helped us and are still helping us process this new way of life.
Proud Mother of three fantastic sons and one exceptional Simon,