Some kids on the autism spectrum start out completely fine. These children develop normally, reaching all milestones then suddenly around 18 months they begin to regress and slowly start to "disappear". No doubt about it, this is devastating to a parent. So many of the stories I read, parents referred to this regression as a "death". A death of the child they loved and knew, a child they had big hopes and dreams for who is slowly replaced with a child who has trouble communicating their basic needs, a child who suddenly appears deaf and fails to interact with them, a child who looks nothing like the one they knew before. The dreams of class president, football star or prom queen slowly fade as these parents adjust to new challenges.
Heartbreaking? Yes. Devastating? Most certainly. Loss of hopes and dreams? Perhaps. Death? Absolutely not.
Autism is a "lifelong" disability, the key word being life. Yes, a child with autism is alive, he is beside you, he is breathing, he is feeling, he is alive. He may not speak, he may not communicate his feelings well, he may throw things at your head in frustration, and he may need the same routine day in and day out 365 days a year and the best parents in the world will be exhausted and frustrated, but, that child is very much alive. I'm not minimizing the heartache or the frustrations as both are very real. And since I have a high functioning child with autism I understand that those of you whose children have greater struggles may hate me and say I don't get it and that's ok, I'd hate me too. However, I do know, regardless of how difficult the challenges that lay before you are, it is not, and never should be, compared to death.
I told you when I started this blog I wouldn't be preachy. Forgive me, but today I am and I hope you understand why. This week I witnessed and felt the heartache of the death of a child. A beautiful child who left an incredible path of love in such a heartbreakingly short journey. The pain and absolute devastation that rained down on friends I love so dearly was palpable. The life they once knew is gone and they now must find a new way to live. I can't begin to imagine their pain. No my friends, nothing should ever be compared to such a devastating irreversible loss, not when your child, no matter how demanding, how frustrating, or how difficult they may be, is alive and healthy, yelling, complaining, and perseverating right beside you.
Yes, autism is pervasive, it is challenging, it can be heartbreaking, but many children with autism make progress, they love, they laugh, they feel, even those children who "disappear". Hopes and dreams that change is not death. A child who was developing normally and regresses is tragic, but it is not death. Death is permanent. Death is irreversible. Death is gone.
A child with autism may pull away from your touch and fail to hug you back, but, maybe when he is sleeping you can softly and conspiratorially brush your lips across his cheek or sniff the beautiful scent of his freshly washed hair even though getting his hair clean may have been a nightmare. Perhaps when your child is so engrossed in his 20th episode of Spongebob for the day he doesn't notice when you give his hand a squeeze. When your child finally sleeps (since so many have sleeping difficulties) you can watch him and feel happy knowing in that moment his rapid firing, complex brain is finally taking a break.
A child with autism may have trouble relating to you, but he knows and feels your love. You can celebrate his progress even if it's not the progress of his peers. You can revel in a moment when his diet now includes a crunchy food and not just smooth foods like pudding or jello. Or rejoice on a day when a meltdown only lasts nine minutes instead of ten. Or feel your heart melt when your child makes eye contact with the young lady at Auntie Anne's Pretzels as she takes his order of cinnamon sugar pretzel nuggets with a small lemonade and has his exact change counted out before her cash register does. No, it's not what you had planned to celebrate. It may not be a perfect score on the SAT, but, it is progress and it is a reason to smile.
It's funny that although I received the book as a gift when pregnant with Kyle, I had the page dog eared when I needed it for comfort with Ryan. A premonition? Probably not. Just an anxious, neurotic mother hoping she didn't end up in Holland too. As you know, my plane (well since I'm terrified of flying chances are it was a train), ok my train, did drop me off in Holland and over the years I have discovered what a beautiful country it is. Just like Ms. Kingsley, instead of feeling sorry for myself and regretting not getting to Italy with most of my friends, I have chosen to enjoy Holland for all its beauty and try not to get caught up in what I'm missing in Italy.
Because I will love him like no other. Because I need him as much as he needs me. Because I will continue to hope and dream for my son in Holland just like the parents hoping and dreaming for their children in Italy. Because my son is here beside me today and needs me now, in this moment, and I am oh so grateful for this beautiful gift. That doesn't mean I won't go batsh**t crazy the next time I have to remake his grilled cheese sandwich because it's "too brown", because sadly, I know I will. A battle will ensue when I agree to make it again because in my mind, it's just not worth the meltdown while my husband preaches about our endless contribution to the food wasting in America. Frustrating? Yes. Exhausting? Sometimes. However, it is a reminder that even on the rainiest days in Holland when the streets may be piled high with stinky trash, this is life, and regardless of where the train left you off, life is good.
Yes, a trip to Holland is not as fabulous as a trip to Italy. There may not be as many fancy shops with high end fashion or all those exotic wines and pastas, but you must enjoy every moment in Holland. The sights you would have never seen, the countryside you wouldn't have explored and the wonderful people of Holland you would have never met. No, my friends, it is not Italy, but regardless of what platform you exited on, you have a hand to hold on your trip (even if it's pulled away in an instant) a head to softly brush your lips across, a heart full of love and someone who counts on you and needs you. Someone who is very much here and present in this life, on this day, in this moment.
When your child is born you have hopes and dreams for their future. An autism diagnosis may change those dreams and that is a loss and it is heartbreaking, but your child is here beside you, counting on you, loving you, so you can still hope, you can still dream. When the tantrums are too much, the routines too difficult to keep, and the kids in Italy are outdoing your child in every aspect, try and find another friend in Holland and hold on because this life that has been put in your hands is extraordinary and you must never take it for granted. And although this trip may not have been on your itinerary, this trip is a gift so stop looking for The Leaning Tower of Pisa and embrace your beautiful child who is healthy, smiling and happy in his own way, handing you a tulip and wearing the most beautiful clogs you have ever seen.