She looked at me, right in the eyes, and smiled. She nodded knowingly, and then went back to her son, who was loudly lecturing her on the prices of bread.
He looked, in my opinion, to be about 25. He looked, in my opinion, to be somewhere on the spectrum.
She was doing exactly the same thing I was – my son was with me and was currently lecturing me about the price of beef tenderloin vs. smaller cuts, not bread. My son was wearing crocs and loose fitting shorts. So was her’s. My son was rocking a bit and pacing as he talked, his arms crossed in front of him. So was her’s.
It was surreal and cool and super scary all at the same time. 13 years from now. Exactly the same?
When the social skills therapist asked me to describe him at four and five years old, I felt sad. I felt really sad, and I couldn’t quite figure out why. When we left, I told my husband. “Every single time we go to a new doctor, I feel a sense of depression and loss – even when it’s a really good doctor – and I don’t know why.”
Later that night, as I was trying to fall asleep, it hit me like a ton of bricks.
I miss not knowing.
I miss what it felt like to have a son who was just a little boy. A boy I could still dream of being the valedictorian of his graduating class. A boy I could dream of being popular and having to fight off the girls.
I miss what it felt like to have a son who was just a little boy, and did not have a diagnosis.
It may be wrong to say that, because the truth is, this is about me, not him. My son could care less about all the things I used to hope for and dream about. This is about me.
And, the more I think about my son in the future, the more I have to let go of my expectations…and learn how to let go of him.
What Happens When My Child With Autism Grows Up?
I see glimpses of it, every now and then…how he will be as an adult.
Sometimes, it’s so sweet and encouraging.
Most of the time, it reminds me that my expectations of his adulthood have to shift.
Like the time he completely froze because they had changed the layout of the grocery store, and he could no longer find his way to the Asian food aisle. He started to panic, as though the aisle and the foods were lost to him forever. What if I wasn’t there to show him the new aisle?
Like the time another child asked what was wrong with him and he shrugged his shoulders and kept talking about reptiles. What if I wasn’t there to encourage him to engage with that child?
Like the time we were on the plane, ready to take off, and they said we had to de-board because of an emergency. He couldn’t do it. He was stuck. The plane was supposed to take off. In his mind, we weren’t supposed to have to go back into the airport again. I had to drag him, kicking and screaming back into the airport.
What if I wasn’t there to do that? Would they have called security? Or worse yet, the police?
Navigating the world is difficult for my son.
Navigating the world without me? Well, sometimes, that seems impossible. It is hard to imagine it being dramatically different when he is 18, or 21, or, 25.
Then, I see the momma in line, with her twenty-something son, at Costco.
And it looks the same.
And I cry.
I cry for me. He is comfortable with who he is and what he loves. But me? I have no idea how to help him make that work in the outside world.
I cry because it looks the same. Because I can’t imagine another 13 years of this.
I cry because I am afraid for what happens when I am no longer here.
I am grateful my son has a strong sense of self. I am grateful he has very little knowledge of how many people there are in the world that will make fun of him, haze him, duct tape him to poles, and arrest him, just because of who he is and how his brain is made.
I am grateful he has no idea.
But I do.
So we go to therapies and social skills groups. We practice in the grocery store and in the airport. We navigate every playdate and group activity, as if it is completely normal for me to be a participant as well.
We are learning that his future depends on now. As he gets closer and closer to the teenage years, it feels like an hourglass has been turned over. Our time to help, to manage, to instruct, and to practice is running out.
Oh my goodness, I couldn’t love this child more and even though I am sad and terrified and overwhelmed, I still have hope.
Now faith is being sure of what we hope for and certain of what we do not see. – Hebrews 11:1
I am learning to be more sure. I am practicing being more certain.
I pray and I pray for the faith not to fear and worry.
I pray and I pray for the faith to use my time with this child for good and for joy and for love and for peace.
I pray and I pray for the faith to trust that this will all work out, exactly as it is supposed to.
And if that means I am still shopping in Costco with my son at 25?
Well then, what a blessing.
This post first appeared here on Not The Former Things in 2014.