And autism joined the story too

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As much as autism made sense, it was still new and it still stung.

“Your son meets the diagnostic criteria for an autism diagnosis.” That one sentence carried so much meaning, answered so many questions, and made so much sense. It was the words I had been preparing to hear since my husband and I said yes to the adoption just a short eight years earlier. As much as I told myself I was ready to listen to those words,  I wasn’t. I was surprised that it still took my breath away. My mind drifted to meeting the tiny human in the hospital when he was a mere 8 hours old. What a joy to pick up that sweet baby! The snuggly baby P turned out to be. He craved being held and bounced.  He always wanted to hold his blanket. I remembered our trips to the doctor’s office (and there were plenty of them) and always visited the drugstore after. P enjoyed looking around pointing out different things he found interesting. The sheer joy on P’s face as he was playing at the park settled in my mind.  I smiled at the thought of P asking for more swinging, more sliding, and more climbing. The bedtime stories that he loved so much.  My favorite memory of P going on a dandelion hunt.  Oh, my!  He enjoys hunting for those beautiful yellow flowers each spring.

As I tried to focus my attention back to the clinicians who were walking through the evaluation results with us, my mind still drifted to my sweet boy.  School had not been easy for him, and I was so grateful for the teachers who went out of their way to help him. P had a hard time making friends, and I was so happy for the few kids who went out of their way to play with him.  We always wondered why P was rigid in his routines–eating, dressing, talking and playing and now it was becoming apparent as to the why did he do the things he did. I am amazed at his perseverance. P can still manage to smile at the end of a long day. He will say, “Tomorrow I will try again.” That thought of him telling me I’ll try again snaps my attention to the present. The clinicians are flipping through the final pages of their report asking, “Do we have questions?”

“Do we have questions?” Of course, we have questions. So many thoughts were running through my mind I wasn’t able to discern which were questions and which were just thoughts starting to run wild. I wanted to vocalize my questions.  Why?  What can we do now?  What will the future look like for P?  My heart was pounding in my ears.  The clinicians were kind to say that they couldn’t answer questions about the future with any real certainty except that P will need routine and schedules along with other additional services.  I thought to myself I was ready to hear the diagnosis. We had known that this was a real possibility for us when we adopted P.   We knew that P’s birth mom had siblings who were diagnosed with autism.  We knew, but the honest truth. I wasn’t ready to hear that my boy has autism. Who would ever be prepared to hear that? It was one of the first times that my husband and I felt that we didn’t even know enough to ask the right questions. Leaving the office that afternoon, I felt the sting of a hot tear run down my cheek. I was lost and didn’t know exactly how to help him.

As much as autism made sense, it was still new for us, and it still stung.  Autism had officially joined our story.  The honest to god question was now what?  In the immediate weeks after the diagnosis, our hearts felt heavy with doubt and worry.  Autism echoed over and over in my mind and soul.  It took time to realize that P was giving us clues all along to the autism diagnosis.  Rigid routines for eating, playing, and working.  Hyper-focused on preferred activities.  Running away or meltdowns when routines were broken or changed.  Dislike for loud noises.  Love for spinning around and around and around times a hundred.  An autism diagnosis helped us and those around him to make sense of P’s world.

We have learned so much since autism joined our story two years ago.   Structure, checklists, pictures, and routine fill our days.  Therapies and doctor visits have met us along the way.  We know that there will be good days and bad days.  It is our attitude that will help P adjust and cope.    Does autism define P?   Not even close!  Even though autism is part of P’s story, it is only a part.  On the hard days, I have to remind myself this is not going to define my boy.  He is a kid trying to grow up.  He has chores.  He has homework.   He has consequences when he things go awry.  He has hopes and dreams.  His dad and I have hopes and dreams for him too.  On top of that list is my hope for P to be a good, kind, caring individual.  To P, life is a great adventure waiting to explore    He will lead the way into the future with curiosity, inquisitiveness, kindness, and love.   That is one story, I can not wait to read!

All my best to you,

Heather

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