His Name is Jack
We named him John.
Right away, we called him Jack.
It was the plan all along. Name him John, but call him Jack.
He’s been called many things since then.
Complicated.
Naughty.
Rude.
Special.
Autistic.
Jack-a-boo.
Jack-attack.
Brother.
Son.
Cousin.
His name is Jack.
I’ve said this more times than I can count.
I’ve said it at doctor’s appointments. During phone calls and meetings with the team at school.
His name is Jack.
Autism is a thousand imperceptible moments.
It is holding your breath when the doctor asks if your child hugs you, knowing the answer is no.
It is phone calls to the pharmacy, chasing down medication.
It is sitting around a table in an overheated conference room, silently wishing you could be anywhere else.
It is a first word.
A small smile.
A step forward.
Then, a standstill. When you are frantic that progress may never happen again.
What if I had known?
That May morning in the hospital.
Would I have named him something different?
Something easy?
Would I have envisioned terrible, awkward experiences at the airport?
Or the way he gets irritated if he sees his birth name on a form or a report?
How the concept of a nickname eludes his rigid mind?
Maybe.
There was no way to know. That’s the thing. There was no way I could have known how autism would appear in our lives like a stray cat.
Autism.
He was diagnosed in 2005. It was a chilly day in November.
I haven’t thought clearly since.
I want to hear myself think again.
We call him Jack.
I should change his name.
I might change it.
I don’t know why we haven’t.
I guess you could say it’s part of his story.
Our story.
Peering into his tiny face in the hospital. Tracing his seashell ears with my finger.
Not knowing what I know now. That his life would be one long fight. For services. For acceptance. For independence.
Some of us are born to fight.
Him.
And me.
Still, the future looms large.
My son at fifty, sixty. Beyond.
I have never seen an old man with autism.
Who will plan his birthday parties?
Who will arrange for cataract surgery if he needs it?
Will he one day need to live in assisted living?
Hospice?
Who will he be then?
John?
Jack?
Brother.
Son.
What will they call him when I’m gone?
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Carrie, it must be so hard to not know the future with Jack. You did and named Jack/John correctly. Nothing is by coincidence, it is all God's plan. We do not know the why, I hope we get all the answers when our souls leave this earth. I pray for that, that I see everyone and know everything when I pass. I believe in our Lord, God. He is the one that has all the answers to the why's. I pray for that a lot. My grandson has autism. He is 15, going to be 16 in a month. He doesn't want to drive. He is high functioning but at the same time, he is just like Cooper, Kate's kiddo. He is so squishable, I love hugging him and don't want to let go. His smell is the best smell ever! I can't leave this earth until I know my children are ok. My daughter has had a well, I don't know what to call it. I have raised my grandson more than she has. He is back with me as of yesterday with his 13 year old sister. I will not allow my daughter or her man to stay at my house. I know that may sound bad but she understands as well as her man. They have caused and did a lot in life. They had a court proceeding that was live and it went viral. All of their secrets, their lives are all out there for people to hear. Most have said that the kids should be taken away from them. It is a shitshow and I am in the middle. Carrie, I also need a crystal ball to see what the future holds for my grandchildren after I'm gone. Who will take care of them and give them stability. My husband and me are trying our best to show the kids some normalcy but they are affected. My autistic grandson doesn't say much, it's all in his head and he will not talk about it. His sister has been affected the most. I'm not sure what to do or say. How do you tell your grandchild the reasons why their parents are not allowed to stay at the house. But, see if I let them stay, there is no reason for them to leave. Then I have them at my house for how long? I hate it, I hate it so much. I love her so very much but it has not been enough time. She has earned her trust back with me but I still have to watch. I wish her father was still here, maybe he could do or say something. She just text me and told me that they were going to get married. I thought what?? But they have been together off and on for over 16 years now. They will not have the wedding they wanted but they do love each other so very much, so I pray it all works itself out. I trust in the Lord so I will wait, with no crystal ball. You go momma!! You got this! Let's get that new book out! Waiting patiently LOL! 💜💜