Tuesday, April 14, 2015

What's Next?

When I started this blog a few months ago, my goal was to post at least once a week. I had a simple plan. The posts would vary in subject but all relate to each other in the matter of things that I have learned (so far) as parent of a child with autism.

 I started the blog by going all the way back to where it all began, when Taylor was born. I think I even stated that I would be making posts in no particular order. I have to admit though, I am a bit OCD and I love to read a story in the order of events. That being the case, I have found that I will get stuck on what to write about because, well, Taylor is eighteen years old and I have so much to talk about! 

Sometimes though, I procrastinate because I end up talking myself out of a post, wondering to myself, “Will this be relevant?”, “Would this post be helpful to someone?” “Will anyone even read this?”
I do feel that if my blog helps one person, that is enough but I have discovered that on some days, that one person just may be me.

So, once again I have been stuck, looking at my laptop, procrastinating each day. Making up one excuse or another to not have time to post that day. This time is different though. It is not because I don’t know what to write about, but because I do know, and it scares the hell out of me.

You see, Taylor is about to graduate from high school in May. Let me first start by telling you how incredibly proud I am of this kid! Taylor is getting the Standard Academic Diploma and I really don’t know if I can explain how freaking hard he has worked to earn this diploma. It’s been a tough twelve years.

My husband and I have spent the last seventeen years focusing on helping Taylor be the best that he can be. School, obviously was a huge focus along with speech therapy, social skills groups and lets not forget MATH. (Not all people with autism are good at math!) Teaching him how to study and how to take tests? I got that! Taking him to speech therapy several days a week when he was younger? I got that, too! These things were just life and we did okay. We all worked hard and we made sure we had fun, too.

So why am I scared?? 

Everything is about to change for me, my husband and Taylor and maybe for my younger two boys.
I have spent a large portion of my life as the mom of a child with autism. I accepted it. I embraced it. This is our life and we will enjoy every moment of it… but now I am about to be the mom of an ADULT with autism. This is incredibly scary to me and even now I am struggling with words as I fight back tears.

What happens now? All these years I have focused on the "here and now" but with that was also the thought deep in the back of my mind, “what happens to Taylor when we are gone?”

Being the parent of an adult with autism makes me very aware of how much closer my husband and I are to not being in this world with our kids. I know that is a morbid thought, and no, I am not dying, but it would be irresponsible to not think about Taylor’s future without my husband and myself. This is reality.

What happens? Will he be okay? Did we do everything right?

When Taylor was little, I would think “What happens if something were to happen to Mike and me?” This thought drove me to teach Taylor how to wash his own hair and bathing himself when he was five years old. He was making his own bed and cleaning his room on a daily basis at the age of six. When he was ten, we taught him how to wash dishes, cut grass, separate his own clothes for me to wash, make his own sandwich. Things that were just chores and everyday things for other kids, were huge accomplishments for Taylor.

I can say with confidence that Taylor can take care of himself to a large degree. That kid is probably the cleanest boy I know. It’s a routine for him. If the green light is on the dishwasher, he empties it…sometimes to detriment of being late or getting homework done. “Green light” means “empty dishwasher”. (Don’t ask him to load it though, he will quickly tell you that is Jordan’s job!) He knows garbage day is on Tuesdays. If we forget to gather the trash, he has been known to wake up at midnight and put the trash out.

If he comes downstairs and sees that my husband and I are watching a movie, he will make us popcorn, regardless of if we want it or not. He doesn't ask us but we always accept our popcorn and thank him every time. “Movie” means “popcorn” and he just showed us he cares.

Routines.
Specific jobs.
Schedules.
Rules.

Taylor can handle all of this, but what’s next?

Everyone keeps asking me.

“What is Taylor going to do after high school?” “What will he do now?”

It’s a legitimate question and really, I don't mind the question but it brings to light that not many people know what happens next for these kids as they move on into the adult world. We do have plan for the next year, but after that? I don’t know. That’s another scary part.

Next year, we are hoping he gets into this program called “Project Search”. It starts in August and goes through May, so it’s like a school year. We have explained it to Taylor that this will be kind of like his college. This program is specifically designed for older kids with special needs who are coming out of the school system. It’s like a vocational college where they will help Taylor discover what jobs he is best at (my guess is something with animals) and he will learn how to work with employers and employees. 

It’s a start but these past few months have made it very clear to me of this need in the Autism Community. These kids are smart. They have goals. They have dreams and they deserve a chance to be involved with their own future. To have a say in what happens in their lives, not just sit in a room watching videos on YouTube all day. That’s not a future I want for Taylor and I know he doesn't want that either, but he needs us to help him find his way.

Taylor WANTS to go college…I believe he will! He is just not ready quite yet to be away from us and to take on the workload that college classes require and I am not going to set him up for failure. If you ask Taylor what he is going to do after high school, he will respond without hesitation, "Work with horses."

My big dream for Taylor is that he finds a job on a farm working with his favorite animal, horses. I dream that he meets a sweet girl and they fall in love.

If Taylor lives with us for the rest of our lives, we are prepared for that, but Mike and  I are not going to assume that is his future. I believe with all my heart that he is going to make a difference in this world.

Every year, I schedule a meeting his teachers  at the beginning of the school year so that I can introduce myself and tell them a little about Taylor. I always say to them, “Don’t put any expectations on Taylor.” I let that sink in for a moment and often received some startled looks from them. Then I would say it again with more emphasis and make my point clear, “Do not put ANY expectations on Taylor, because if you do, that’s all you will ever get from him. Put no limits on him and Taylor will EXCEED ALL YOUR EXPECTATIONS.”

He is going to exceed mine, so I guess it’s time to buckle up because the new ride is about to begin. It may be scary, but aren't roller coasters supposed to be?



1 comment:

  1. great post. I am a mother of a child with Aspergers. I have the same fears thoughts and prayers you do. And I suspect, with parents like you guys, Taylor is going to do just great!

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