It was the week before Christmas when Jacob asked the question.
It wasn't how I had envisioned it in my mind countless times before. For whatever reason, I had figured it would be both my husband and I sitting Jacob down, giving him the details of his diagnosis. We would explain it the best we knew how, fielding all his questions and giving him all the right answers. Deep down, I knew it was time. Yet we always seemed busy, or the time was never quite right, or was it really time?
So I hadn't really expected it as we sat in our eat in kitchen that cold December night, while my husband was working late again, the kids ate their corndogs, and I went over the long list of things yet to be done to prepare for Christmas.
"Mommy, do I have Aut-ism?" Jacob asked in between bites.
The question jarred me out of my thoughts of shopping lists, Christmas cards, and treats to be baked. Had I heard him correctly? Surely I hadn't.
"What did you say, honey?" I asked.
"Do I have Autism?"
The word sounded foreign coming from his mouth, as if he was saying it oh so carefully so as not to mispronounce it. A million thoughts immediately scattered through my brain. Where had this come from? What would I say? Would I find the right words? This isn't how I had planned it. Why couldn't my husband have been here? Oh, please don't let me screw this up. You only get one chance to tell your child for the first time that they have Autism.
"Well...why do you ask?" I asked him. Hadn't I heard once that answering a question with a question was a good practice?
"Because T at school said he is pretty sure that I do. So do I?"
My first reaction was, "who was this T kid and why was he telling my son this?" And then I remembered, T was the boy in Jacob's class who also has Autism and had shared that information with his peers early on in the year. Somewhere along the line someone must have shared with him Jacob's diagnosis.
"Would it bother you if you had Autism?" I asked, again using my answer a question with a question technique. I needed to know what exactly he knew and thought about all this already.
"No", Jacob answered short and sweet.
"Well, yes you do have Autism," I told him.
I went on to tell him just briefly how his brain thinks differently, how things bother him that don't bother other people. But my words were lost as he and his sister were bent over his tablet playing some cupcake creating game.
There was so much I could have shared. Social struggles, obsessive thoughts, behavior problems, sensory issues, anxiety, meltdowns, frustrations, ADHD, etc, etc. But really is that what Autism is? Sure those are the clinical "Signs and Symptoms" of Autism, how Autism presents itself to the world.
It just seemed to me if I did that, it would be like telling him his brain was wrong. It's not wrong, Just different. I want him to grow to be a confident young man, to feel empowered by his diagnosis, and not use it as a crutch or to feel shame.
I want him to know that with his Autism comes much love. Such a deep love that if I could take away all those struggles, I would. I want him to know that he has Autism, but that is not who he is, there is so much more. I want him to know that it is a big deal, yet in the same way, it isn't a big deal at all. Nothing changes. He is the same sweet boy I have and always will love unconditionally.
Maybe that was all he had needed at that moment. I knew that bits and pieces would come out here and there and we would give Jacob the valuable information about his diagnosis as he needed and wanted it.
It wasn't as if Jacob knew nothing up to this point. We had talked about things "bothering him" or making him nervous. He knew he took medicine to help him with things that made him anxious. He had paras at school that helped him, and he knew that other kids did not, and he always seemed ok with that.
He knew that mom and dad went to meetings and that the other parents there also had kids with things that bothered them. He had asked why he went to doctor appointments when he wasn't truly sick, when other kids did not. And at those doctor appointments we openly talked about his diagnosis with the doctor while Jacob was in the room.
We hadn't kept it hidden. We just had never given a formal name to any of it.
We had just rounded the corner to school and were in the back of the long drop off line. Jacob had been talking about "T" again as he had for the past few days because he was wanting a play date with him. He had given T his number and was inquiring as to why he hadn't called yet.
"T has Autism. Do I have Autism?" Jacob asked me as we entered the parking lot of the school. Could his timing have been any worse, as I knew I only had a few minutes before it was Jacob's turn to exit our vehicle.
"Yes, you do, Jacob, remember when I told you that before?" I told him. "Do you know what that means?"
"That I talk a lot!" he answered.
I laughed.
"T talks a lot, and I talk a lot," Jacob said.
"You are right. You do talk a lot! But it really means that your brain just thinks differently than other people."
The silence from the backseat made me wonder if he was paying attention or if my words had been lost again. I turned around expecting Jacob to have moved on to something else. Instead I could tell he was thinking about my words.
"Do I think different than other people?" Jacob asked me.
"Sometimes, but that's what makes you awesome," I answered.
A huge smile spread across his face.
"I have cooking club after school today," Jacob said.
He had moved on. He had the information he needed for now, and just in time as we pulled up right in front of the school.
With a quick kiss and a hug he was out the door.
Round two, had gone well. Thank goodness, because the drop off line at school can be a dangerous place if you don't follow the rules.
