One Day at a Time

Autism AdultTransitioning from having a child with  Autism to having an adult with Autism has been quite a journey for me.

From the time we received Taylor’s official diagnosis when he was a toddler, my focus was on the task at hand. There was always a challenge in front of us and so we really never had time to think about “grown up Taylor”. We we’re too busy focusing on “toddler Taylor” and “kindergarten Taylor” and “elementary school Taylor” and “Oh my God, what will happen when he goes to middle school Taylor”.

I think it was during his 10th grade year in high school that it began to sink in that Taylor was about to be in the real world. Somehow it snuck up on me and I wasn’t ready.

Knowing what I know now, would I have been able to plan better for Taylor’s life as an adult?

That is something to think about and something that I HAVE thought about.

The answer is simple. I don’t know.

Would I have been able to do anything else differently?

I admit that I wish I had known then what I know now. I may not have wasted that whole summer sitting in a hyperbaric chamber when he was twelve years old.  Maybe I  would not have changed his daycare when he was two years old or waited until he was five years old to teach him how to swim but overall, I don’t think I could have done anything much different because the knowledge wasn’t out there. We were on our own and learning as we went.

It is very easy to sit here behind this keyboard and tell moms and dads to plan for the future of their child but in my opinion, that is much easier said than done. I mean, plan how?

The most important and obvious reason it is hard to plan their future is that every child with autism is completely different. Taylor has High Functioning Autism and that left a lot of question marks about his future. There were so many ways he could have developed and progressed (or not progressed). I soon realized that I couldn’t look at how other people with the same diagnosis succeeded because, like I said before, they were all different.

Now, there are some things I could have been better prepared for I guess.  Things I never thought about when Taylor was little, like the fact that my husband and I would have to go to court to become his legal guardians as soon as he turned eighteen. When I learned we had to do this, I was caught way off guard, “I’m his mom! I don’t need a court to tell me I can take care of him.” Right?  Um, no. That’s not how it works.  We also didn’t think about Social Security for him as an adult until it was brought up in an I.E.P meeting when he was in high school. These were things that were never on our radar, things we didn’t know we needed to explore. There was no one to tell us any of this so I am passing it on to you now. Now you know.

“I had to take each step one at a time. That doesn’t mean I always wanted to. It was easy to daydream about where Taylor would be in the next year.”

When Taylor was little, I’ll admit I spent a lot of my thoughts on imagining Taylor as an adult with little to no signs of autism. I had read all the feel good stories about the autistic kids that grew up to become doctors, professors, artists and writers with spouses and happy children. I dreamed this would be my son’s future, too.

At the same time, I also spent a lot of my time in those early years praying each day that nothing would happen to me or my husband because who would take care of Taylor if we were gone? I don’t just mean young Taylor, I mean 40 year old Taylor. As much as I dreamed of him becoming the next Temple Grandin or Thomas Jefferson, I also worried about his future life. What if he never talked, interacted with others or was able to live independently? It was very scary to think about that and worrying about it did me absolutely no good.

So, as a mom with a two year old with autism, I focused on what I could do in that moment. First on the list, teach Taylor to talk.

Next was to teach Taylor eye contact. Then we taught Taylor how to express his feelings using his words. When Taylor finally started talking, I focused on the next hurdle, teaching Taylor how to socially interact. (We still work on that)

I had to take each step one at a time. That doesn’t mean I always wanted to. It was easy to daydream about where Taylor would be in the next year. But I found that if I got too ahead of myself, daydreaming about what his life could be, I would go into that place I call the “What if” place. That “What if” place is a dangerous place for me. I would find expectations there only to come back to the real world and realize they would be unfulfilled. That was never fair to Taylor.

I needed to celebrate with him in the moment of the current goal he had achieved. I couldn’t allow myself to think past the current goal, much less what we would be doing in 15 years.

We continued to focus on each moment, the task at hand that day, not the years in the future. I made sure I did everything I could to make success for Taylor a very real thing, not just something I sat and dreamed of for him.

As the years went by, each goal became a bigger one for Taylor. Soon, the goal was to graduate high school with a Standard Diploma. Something I never had time to even think about when he was a toddler, because we were too busy learning to talk and read and make friends.

Now his current  goals are to be successful at his job and to learn how to drive alone (which he is working very hard on). When he has mastered those, he will add a new goal.

Let me say this. You have one advantage that I didn’t have all those years ago.

Information. Information. Information.

Use it! Research and then log that information away.

Read the blogs. Read the books. Go to the seminars.

Meet other parents with children (or adults)  on the spectrum.

Listen to their stories and use that knowledge and experience to your advantage.

Most importantly realize that one day your child will be a grown man or woman and they will still need you.

And in this moment, allow yourself to enjoy that first time your son or daughter uses their words without worries of tomorrow. Enjoy that first picture they draw for you or that new song that they learned to sign for you.

I guess what I am trying to say is that it is okay to just focus on this day. You are allowed. Be in this moment and savor all the blessings that come along the way. That’s where they learn. That is where they grow. That’s where their potential is discovered. In that moment with you.

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