After a hard day or night, my mind can free-fall into dark gullies. I think about our hidden life, within this Secret Wold of Autism, and feel utterly alone. Sometimes it feels like we are in a parallel universe to everyone we know and care about. The roads, bridges and tunnels look the same, but how we navigate them is different. The hopes and dreams are the same, but our opportunities are not. Our children look the same as any other, but have unique, beautiful and complex operating systems. And we all seem like an Average Joe or Ordinary Jane, until you spend a day in our shoes.
Sometimes it breaks me to know that special needs parents don’t get to have feelings. We are trolled and censored and chastened by people we’d hope would care. The moment we express a negative emotion, the people closest to us and society at large, rush to invalidate it. We’re not allowed to say that this life is hard, and that we are scared and exhausted. We’re not permitted to express grief for the life we imagined we’d have. We’re accused of not loving our beautiful children when we talk about our concerns about their adverse behaviours. And our hashtags plead with the world to show our kiddos basic human decency: Awareness, Acceptance and Inclusion.
When we say we’re alone, we’re assured that we are not. But there’s no rush of volunteers to muck in and help take the pressure off our shoulders. Our bosses are sympathetic, but still expect us to make quota – there are no accommodations for sleep deprived, beaten down parents amongst the regular workforce. Hell, even our own spouses don’t want to come home to a laundry list of the day’s dramas. And our family isn’t interested in excuses for why we can’t make an event – again. And our friends stop reaching out to us because we don’t have the time or energy to nurture those important relationships. And even when it’s just us and our children, our special kiddos pick up on our every anxious thought and creeping fear, and our feelings amplify their own dysregulation. There’s never a moment for the nervous breakdown you deserve or an available ear to help you process your turmoil. It’s a lonely existence at times, make no mistake about it! And that’s why reaching out to other people walking the same path is such a lifeline for us.
If you ever had a thought to sharing your journey with others still struggling, special needs parents in crisis coming up behind you, or those who live their lives in ignorance, please do it. The world needs to hear about your lived experience. We need to spread awareness of lives that don’t fit the mould, or look perfect on a Christmas card, or even make much sense to others. And other autism parents desperately need to know that they’re not alone. Spread light, by inviting it into your occasional darkness. Come up for air, and claim your place in this world. Sharing your strength, hope, and challenges may not be the validation you deserve, but it may just be the life raft someone else needs.
