A few weeks ago, I posted a blog about exactly what to do after you have learned of your child’s diagnosis, you can find that post here. Its a bit overwhelming and once you pull yourself out from behind the curtain of sleep deprivation and emotional exhaustion you need to do something very important. Find Your Tribe.
At first, your friends and family will be there. Emphatically. Supporting you. Hanging on your every word and asking how they can be there for you. You may have friends that will want to help, give you a bit of respite, but in time, autism will be a big part of your life. It will envelope who you were. It will change you in ways you never expected and while those friends and family members will stand by, unless they too are living it, they won’t completely understand. Ever.
You have entered a secret world where you and your family will experience things you only read about. You may be in shock you are living this life and putting your feelings into words may be overwhelming. In fact, parts of this secret world, you may be embarrassed to share. This is your new normal. Your once busy, bustling family will still be just as busy but in between your typical children’s sports and lessons you will be headed to occupational therapy, speech and even physical therapy. The home that kids once ran through all summer long, where children rushed in for lemonade and cookies will now be different. Children may not show up as often and perhaps you will fear inviting them over.
Reality is, those first friends you had, before the diagnosis will be there. They will listen, some will even try their best to learn pouring over books, texting and reminding you you are not alone but be careful because they may tire over the number of conversations about therapy or school or your expectations not being met. They may not understand the moment of celebration that your child is finally sleeping through the night, at 7, that your child had a reciprocal conversation at 9 or perhaps your child stopped being so aggressive and began using their words. Its not that they don’t care or want to care, they aren’t card carrying members of Mothers like us.
Sometimes, they feel guilty. Most know their lives are different. Some may even feel badly for you and not know what to say. They are still your friends, but once your eyes are dry from crying, you have found your voice to advocate and you are no longer standing on shaky ground, find your tribe.
For me, its happened. I found a group of moms living life with autism. We have one single thing that bonds us and the conversation about elopement receives nods of understanding, the tears of aggression receive words of comfort and the celebration of an experience in a typical situation is met with a joy only a mother who has spent countless hours sitting through therapies, doctors visits, titration of medication would understand. Not only does it feel good, it will help me not to burden my friends and family walking a more traditional journey to hit the F-U button when I call for fear of my lamenting the struggles of the day.
Last night on a whim, I decided it was time. To speak, so as I jumped on a call with a group of women, I spoke candidly about our journey. As the comments popped up in the chat box, others understood. They too lived this life. One even said I was speaking her language- I think its the “exhausted, overwhelmed, autism mom speak that I spewed a mile a minute in case my daughter woke up” language that is just now being put into Miriam Webster Dictionary. This world we live in sprinkled with autism isn’t bad but its one that can be heavy. Each of us is learning constantly and without a tribe, its an incredibly lonely place. While I talked long after my bedtime I felt at peace. Today, when I woke up, I was rejuvenated. I felt more alive than I have felt in months and it felt good. If you have yet to find your tribe, let me know, I’ll direct you and you can join me there and feel whole again.