Lost and Found Along the Autism Spectrum

In this moment I see you so clearly. There you sit beside me. Your head resting gently on my shoulder. You melt into me and there we exist together. We live in the sweetness of the moment. I soak in every bit of you and this unfamiliar closeness. You feel calm and relaxed. You are not making a sound. Here in this moment I do not see my son with autism. I look at you and I see you. My son.

I take extra care not to move. I fight back every urge to brush your hair away from your face. To kiss you on the head. I want to stay frozen in the moment with you. I try to memorize you this way; nestled closely against your mommy. Your mommy who yearns for this closeness with you.

And in an instant that relaxed boy slips away. The boy lost in the stillness of a moment. The boy silent enough to hear a pin drop. The boy safely snuggled against me.

You were here with me in this moment. I found you. And now you are lost.

I can still see you. You dash around the room; leaving everything in your wake. I can hear you. You buzz and screech; filling the house with your strangely familiar sounds. I can still feel you. You slam into me; desperately seeking release for the sensory impulses that take over your body.

Just a moment ago you were beside me. And now you feel so far away.

And I am filled once again with sadness and confusion. Lost on a journey I do not understand. Desperate to find answers. To find peace and acceptance for the things that are all around me.

Finding you; and losing you. Finding myself; and losing myself.

Lost means something different to me today than it used to.  You are not misplaced. I cannot seek you out. You are not hiding in a closet or underneath the bed. I have not forgotten where I left you. You are standing right in front of me. And yet somehow, in some moments, you feel lost. Or I am lost. Or maybe we are both lost together. Lost in something bigger than both of us.

Because as difficult as it is for me to understand, I know that you do not feel lost as you spin noisily through the world. You are the boy frazzled and frantically moving around our house. You are the boy overstimulated and explosive with energy. You are the boy taking apart the pieces of the world around us and putting them back together. You are that boy. This is you.

And as deeply as I know anything, I know that it is not you that I have found in those quiet still moments. It is me.

Lost deep in that moment I feel found. Lost in something so rare and bittersweet. Lost in something that should feel so familiar. Lost in the simple joy of existing in still peacefulness with my son. And there I am. Lost and found all at once.

And as I revel in the impossible possibility of being both lost and found; I reach a deeper understanding of how you must feel every day. My sweet boy.

Lost in a world you do not understand. And found in the movements and sounds and wiggles that center you and bring you peace.

Not the kind of peace that we may expect. Your peace is not quiet or simple or still. To us your peace sounds loud. To us your peace looks complicated. To us your peace seems rigid. A peace that only you can recognize. A tireless peace that you call home.

Lost and found along the autism spectrum. A loop that does not break.  A journey that does not end. Unbounded. Unending. Unwavering. Lost and found and lost again.

lost and found

Autism Services: The Struggle is Real

I am a HUGE proponent of ABA therapy. When I think back to those early days just after my son’s autism diagnosis I know that I was lost. Lost and wandering. In need of something, anything, to guide me to safety. But I was not even certain that safety existed anymore. And then something incredible happened; we found ABA therapy. And ABA was the thing that pulled us to safety. Day by day we started to feel present in our life. In our new normal life. A life we never imagined.

I cannot think about ABA therapy without thinking of the little green note card that started it all. If I am certain of anything, it is that I will never forget that green note card. For almost a year I had been struggling to talk to my son. Resorting to gestures and guessing games to understand his wants and needs. And then our ABA team rolled in with their magical green note card and changed it all. The card simply said two words “I Need.” I remember going downstairs to participate in therapy during his second week of ABA. My son grew frustrated and was not communicating with us. The technician held up that green card and my son responded instantly “I need a snack.” I was in a total sensory overload. My eyes and ears were stunned.

From that moment forward I was a believer. I was Team ABA all the way. And I still am today. ABA has brought so many wonderful gifts into our lives.

But there is a side of autism treatment that people rarely talk about. No one talks about how hard it is to find services. Or the struggle to find consistency. Or the time and energy parents spend advocating for the services their children need.

As an autism mom I have to walk the line every day. And, parents to children with on-going medical needs know exactly what line I am talking about. The line between diligent mom and crazy psycho path. And you would not believe just how difficult it is to stay on the right side of that line. Because when it comes to our kids it is easy to feel a little crazy. And when our kids are in need it easy to act a little crazy. And slowly but surely you start to feel like Shirley McClain in “Terms of Endearment” screaming for your child to receive the medical care that he so desperately needs.

I call these “my terms of endearment moments”. And if I am being completely honest, I have had a few. Because any parent navigating a long-term medical journey with their child will tell you that when push comes to shove, they choose their child every time. And sometimes that means we go a little crazy. Sometimes we yell when we should whisper. Sometimes we send off reactionary emails when we should calmly meet to talk. Sometimes our instinct to protect makes us pounce when we should shield.

Nothing makes me want to flip a table faster than unnecessary obstacles placed in my son’s path. I know that obstacles are inevitably a part of this journey. And I accept obstacles that arise from unforeseen circumstances. But, I do not have time or patience for obstacles that could have been avoided.

I am not a doctor. I am a mom. A mom taking a crash course in autism.  A mom majoring in love and minoring in navigating an autism diagnosis. I know more about fidgets and sensory tools and behaviors strategies than I ever cared to know. But I am not a doctor. So I need to trust the medical staff around me. I need to believe that my son is more than just another patient to them. I need to have faith that our best interests are always in mind.

But sometimes this is hard. Because sometimes it does not feel true. Sometimes we feel like just another family with a required number of hours needed to check all of the boxes.

The truth about autism treatment is that it just is not good enough. Bottom line. Services are too few. Resources too sparse. Waitlists too long. Funding too limited.

We started ABA Therapy in June of 2015 after spending two months on a waiting list and another month on-boarding. In our 26 months with the program we have had 2 case managers and 14 behavioral technicians. And each time we lose a member of the team we lose history, we lose momentum, and we lose progress. We begin the training all over again. And each time we train a new person our son backslides.  Once extincted behaviors re-appear and new behaviors multiply.

And everyone tells us to see the silver lining. To welcome the “fresh” energy on the team. To focus on “new” experiences with the eager and ambitious replacement. But maybe I am just too tired and too jaded from the 13 other technicians we have trained to revel in the fresh newness of it all. It is hard work. And it is hard work that we will endure time and time again. 

The reality is that this is an entry level position with minimal training requirements and minimal wages. New technicians only train in our home 3 times alongside another technician before beginning one-on-one sessions. The turn-over is high and the cancellations are frequent. And as a mother so desperate for the best for my child, I struggle accepting this. I push back. I ask for more. I fight this battle.

But this is a battle I cannot fight on my own. It is a battle so many parents face every single day. The battle for the quality and quantity of treatment and services and care providers that our children deserve. 

ABA therapy is an incredible and life-changing experience for us. But on this journey even the good comes with struggle. So we keep pushing forward. I keep walking the line. And from time to time I step off course. I let my inner mommy psycho path shine through. I give her a pat on the back and then I keep on keeping on. Because there is no map. And, there are no rules. So I am just walking the line. One foot in front of the other. Diligent Mother. Crazy Psycho Path. And everything in between.

JS

 

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