Here is my closing to ShareUnion. The theme of the conference was "Finding Your New Normal." Thanks to all who were there and if you weren't, I hope you will join us next year. I can promise that it will be a weekend that you will find healing, some tears, a lot of laughter. If you join us next year, I can promise that it will be a weekend you will never forget.
Finding My New Normal
If you know me, you know that I have a wife and two children. If you really knew me, you would know that one of my children has special needs. And then there are the things I keep secret to everyone but you. Share is a safe place, a welcoming place not because of software or because of the March of Dimes, but because you make it so. You have guarded the secret thoughts and fears of millions of parents throughout the years as if they were your own. You have listened to the stories of parents around the world. Stories like this one. Stories like mine.
In 2010, I had a little genius as a son. His first word was rectangle. At four he could spell the word refrigerator. Julien and I would take turns reading paragraphs of the NY times together on Sunday mornings. Kristen and I would dream about him as a doctor or a lawyer or the next great novelist.
But Julien didn’t really speak in sentences. He spoke in fragments. Sometimes nonsense with little bits of clarity. Mostly random repetitive words. Honestly, it seemed like perfectly normal four year old language to us. We had nothing to compare it to. We assumed that all four year olds talked like that.
What worried us was that he was sad. All of the time. He would just cry, quietly. Tears would appear and silently fall from his face for what seemed like no reason. Other times, he would throw temper tantrums. Brutal, terrible tantrums that would sometimes last for hours. There was nothing we could do to console him. Except yelling. Just as we were right at the edge of insanity, we would start yelling at him to stop. For some reason, the yelling soothed him.
So we became yellers. We yelled all of the time. Then the balancing started happening. Julien would balance things. Pencils. Staplers. Spoons. On anything. The edge of his bed. On lampshades. He would stand pencils up and balance pencils on those. Soon the whole house had random things balanced on other things. Our house had become a real life house of cards delicately balanced and ready for collapse. Two things would soon take it all down.
The first was the appearance of ticks. Julien’s uncle Stephen came over one day and told Julien to put up his dukes. Julien adores his Uncle Stevie now, but back then Uncle Stevie was a cause of anxiety. Uncle Stevie would have Julien put up his dukes and then playfully tap him on the head to get Julien to protect himself. It was all very innocent, but for Julien it became a way to cope with stressful changes to his environment. Soon he was putting up his dukes for everything and all of the time and would scream “dukes”…not with anger, or in play but with desperation.
And I…and I handled it, well poorly. He was going to enter pre-school soon and I was afraid that the other children would pick on him for being odd. It needed to stop. If I didn’t stop it then, it would just get worse. I needed to protect him from the world. I needed to fix it. At first, I would explain to him that he needed to stop it. The dukes went up. Then I would yell. The dukes went up. I would take away his rubber triceratops, his plastic Maria and his teddy bear. In other words, I took away all of his sources of comfort. And the dukes went up. He would cry. And the dukes would go back up. I would give him a hug. And the dukes.
Months of this went on until one particularly bad day that left Julien and I both crying and he was looking at me screaming dukes…and I snapped out of it…and realized that he couldn’t help it. My world turned upside down. My fixes were not plugging holes in the dam, but instead were like a sledgehammer breaking the whole dam apart. He couldn’t stop the dukes and I was making it worse.
I would like to say that I had a day to recover and make it right, but the next day proved even more significant. The four of us were sitting at dinner. Kristen, Julien and Julien’s brother Dylan who was then two. Dylan and I were talking about his day and all of the things he saw and did and what he wanted to do tomorrow.
I called Kristen into the next room and said that wasn’t it interesting that I could have a conversation with my two year old but have never once had a conversation with my four year old.
And it was then thay my whole house of cards crumbled.
Never underestimate the power of denial. All of this time, we were talking about what he would grow up to be. He just had some quirks. Easily fixed with love and attention and well, some occasionally yelling. Now, there was no escape. There was something wrong and we knew it. Something very wrong. In that moment, our entire lives took a huge shift and we had to find a new normal.
I am wearing my family team walk t-shirt. We all have family teams, whose team names have meanings only to us. Each team name though is significant. They highlight the names of our children who have suffered and overcome and some who have suffered and lost.
Each team name has a story behind it. Each team name has a story to tell.
After all of the testing, we learned that Julien has autism. He wasn’t going to go through the normal route of school. Instead he was going to go to a school for children with special needs. Anyone who has been through this knows that none of these schools are ever close. We would be putting our child on a bus for an hour each way and he would be afraid.
We visited many schools. None of which seemed like the right fit. Some felt too institutional. Others not structured enough. The one we eventually found was perfect and we knew it before we even entered it. Right in front of the school was a statue of a friendly looking triceratops as big as Julien. Every day, on the long bus ride we knew he would be looking forward to seeing his dinosaur friend. It would be his new normal, and it would be something that would make him happy.
Years later, it seems that constantly finding a new normal is the norm for us. Raising our beautiful, loving boy with autism has daily challenges, adjustments and constant shifts. He has a community of teachers and therapists and family members who know what he is saying even when he doesn’t know how to say it. He still sometimes cries for no reason, he still sometimes has inconsolable tantrums, but he also now smiles and laughs and has more good days than bad. He knows he has a place in the world and is loved.
And…that is what I hope you have gotten from this year’s ShareUnion. I hope you have found or re-discovered your community of friends and parents who understand what you are saying even before you say it. I hope you find your place on Share and that the love and support you get there is your new normal.
James thank you for sharing your story of a new normal. Thank your for trusting and sharing your boys with us! I hope to one day meet your sweet boys! Thanks for always being there for each of us, as it has to be hard dealing with all of us as we come to grips with this new normal!
I loved your closing and the way you shared your story. You stated exactly what I want for Charlie... I want her to be happy, know she's love, and find her place in the world.
Thank you so much for another great ShareUnion.
Thank you for posting this! I hated to leave before the closing this year. Having met both of your special little guys, I can see that they are very loved and very much cared for and know that your heart is deep inside of their little bodies!
Thank you for all that you do!!
As always your closing remarks were perfect. Thank you so much for always being there and giving all of us a safe place to find our new normal. All my love.
Thank you for trusting us with Julian's story; your family story. I assure you that in midst of all the chaos that some times surrounds our kiddos they know and feel our love. Julian feels the immense love you have for him. That is and will always be the one constant in our daily changing new normal.
Your story stirred many "me too" moments for me.
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