An Open Letter To Autism Parents From Someone Who Knows…

To the autism parents in the United States and abroad. To those well-researched and well-versed. To those unable to label the affliction or still not ready to come out from under the blanket to stare the puzzle-piece shaped bogeyman in the face. Or those who are still sitting by the phone for the call to be taken off the waiting list in order to receive a proper diagnosis. I pray for you every hour on the hour, just as I pray for me. I raise my fifth coffee of the day in your honor.

For all the bite marks on you and on them. The tiny red dots that don’t fade fast enough. And the scratches that make people think you have a brand new kitten and you have to explain that it isn’t a kitten but your child.

For all the tears smeared on your shirt and the snot that builds up in the fibers as they push against your well-meaning gestures and scream noises into your belly that you have only heard in horror films.

For all the times you have had to place your hand between their heads and the floor, or the wall, because you did something out of routine like had a friend over or gave them juice before serving their lunch.

For all the times you have had to chase them into traffic and then had to put them on a leash because they can’t tell the difference between either side of the curb.

For all the ways you have had to silence yourself while they spin in circles because as much as you know they will be dizzy, they need to do it in order to calm their nerves. Or flapped their arms in order to convey excitement instead of telling you to your face how happy they are to be at the fair or the aquarium.

For the words they can’t speak and the times they can’t respond “I love you too, mommy, daddy.” My daughter can but many are not so fortunate. It is a spectrum after all. And even when we think we know where they are along that line, we really don’t until they are older. So we stand there over the stove at dinner asking ourselves in our heads if this is more serious than we think. Whether or not they will ever be on their own. Whether or not they will always be in the nest.

For their confusion when you express yourself. Or tell a joke that they can’t laugh at because they don’t understand. And the times they do laugh and it doesn’t make any sense but you are just thankful that they are happy. They are happy, right? RIGHT?

For all the nights you have laid there awake with them until midnight, one, two in the morning because they don’t understand that bedtime is an actual thing. They don’t know that you have the ability to sleep and need it to get them through another day.

For all the sobbing you have done into your pillow or the shoulders of your loved ones because you don’t understand how this is happening to your perfect little being and what you could have done differently. Spoiler alert: There is nothing that you could have done differently.

For the little amount of time that you actually get to yourself and the fact that you spend that time wondering if they are okay. If they have run off. You have read the news and seen the sad stories of missing children with autism and you will always feel like you were the one who got the phone call, even if it wasn’t your child. Your heart will always hurt. You will always fear the worst. Or if they have harmed another person the way they have lashed out at you. If the people who are caring for them, teachers, aides, family members, will treat them with the same fragility as you do in those situations. We have come along way with respect for the disabled but not everyone is there yet. Is the person caring for him there yet?

I consistently try to make a point to show that I am with all of you no matter where your family falls on the spectrum. I think about mothers like myself. I cry for them. I imagine other children of all colors and creeds behaving the way my daughter does and worse. I put myself forever in all of your shoes and try to feel one with each of you. Even those whose children are now adults as you navigate a world that doesn’t know how to employ the influx of autistic individuals. Finding pride in the child that pushes shopping carts while the neighbor’s son goes to Harvard. Of course you find that pride, but you always ask yourself “What if?”

“What if there was a way to fix this?”

“What if we solved the puzzle?”

“What if we found the cause and cured the world of autism?”

“What if I wake up tomorrow and my child is like every other child?”

Another spoiler alert: There isn’t a cure. There isn’t a miracle where you will wake up one day and your non-verbal child will suddenly recite Hamlet to you. But there is you.

There is your choices.

There is your love. And strength. And patience.

There is the fight within you.

You must continue climbing every mountain and turning over every rock to find every resource available so that your non-verbal child will learn how to communicate. So that your awkward child will try to make eye contact with an interviewer for a job one day. So that your child banging his head on the floor will soon decide that it is not an effective method for expression. YOU are the miracle for them.

We can lay in bed and cry all we want when we have the time but we need to wipe our faces and get up and keep searching for the best possible ways to make their lives as comfortable and content as they can be. You and all those that support your little autism family are the cure. There is a lot of hope in that. Hold on to it.

With love, Alyssa Ruggiero

 

 

 

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