Thursday, October 24, 2013

Thinking About the Past and Hoping for the Future

Last year, this article was published in the on-line content of Johns Hopkins University Press "Narative Inquiry in Bioethics Project Muse".   Here is it in its entirety.

As Jacob’s mother, I made it a priority to make sure Jacob always had what he needed.  Today, the result is a Jacob representing over 15 years worth of love, patience and so many supports, services, and therapies that I can’t quite remember them all.  He’s a confident young adult.  He attends public high school and is on track to graduate with his class next spring.  He has a part-time job at Best Buy through his school’s Workability program.  He has a few friends with which he frequently interacts and plans weekend stay overs at our house.  He manages all of his school work on his own with no supports from professionals or me.  He even advocates for himself at his annual IEP.  By most accounts, Jacob is a success.

While I know that the combination of all the professional services that Jacob received has been a big factor in how well he is transitioning to adulthood, I know that equally as important was the time that Jacob and I spent together developing a successful relationship while he was growing up.  Trips to the park, visits to the aquarium, and overnight stays in Big Bear, all of these developed positive memories that brought us closer together.   Looking back, I don’t dwell on his challenges, but I do recall with great fondness the fun we used to have and how happy he became during our shared experiences.  How excited he became when he saw a cow in a pasture out of our train window during our three-week vacation to Switzerland.  How much he loved having the musician Robbo perform at his fifth birthday party.  Active day-long visits to pretty much all of the major zoos and amusement parks throughout Southern California .  Thinking about these memories brings a smile to my face when I recall these joyous times we used to share.

For the most part, I wouldn’t change anything from the past except for one:  implementing the Relationship Development Intervention program when Jacob was first diagnosed.  We started working with an RDI consultant when Jacob was 15, and I’ve found it to be extremely important and instrumental for me in developing a healthy relationship with Jacob as a young adult.  Through the RDI program, I was educated about the core deficits of autism and how the development of dynamic thinking skills would be the key to his success as a young adult.  It helped me examine my method of interaction and communication with Jacob and alter it in a way that helped him accept what I was saying instead of rejecting my information outright.   Now, Jacob and I have a respectful relationship, and he’s growing into a kind and considerate young man who really tries to show that he cares about me.

I’ve also learned not to compare myself to Jacob when I was his age.  He has autism.  I don’t.  What came naturally for me at his age is a challenge for him.   At 18, I had formed a separate identity away from my family.  I sought out new experiences.  I had friends and I wanted to spend time with them.  Jacob couldn’t be more different.  For my 18th birthday, I went on a five-day camping trip with friends.  For Jacob’s 18th birthday, if I hadn’t made plans to order a pizza, watch “The Big Lubowski” together then go bowling, he would have spent it watching TV in his room.  Letting go of expectations of Jacob is something I gave up on long ago.  If he’s engaged in productive endeavors like holding job or attending school, I’ll be happy and I won’t nag him for what he’s not doing.

I truly understand and appreciate what it’s like to be the parent in charge.  I used to equate myself to the quarterback of Jacob’s life, and it was actually empowering to have the ability to make decisions for Jacob that had a positive impact on his development.  But Jacob is now an adult, and it’s  time for him to find his own way and make his own decisions about his life away from me.  I’m not the quarterback of Jacob’s life any longer, I’m the observer watching on the sidelines.  And I have to admit that sometimes, even I have a tough time with coming to terms with this.

For parents, assisting your child in their transition to adulthood can be a scary, overwhelming and completely confusing process.   To make matters more complicated, a young adult child must learn to become independent from Mom and Day.  He needs to learn to rely on himself to make his own life decisions and choices, which is almost impossible if he’s still relying on his parents to tell him what to do.

Jacob turned 18 last year, and it’s seems that the investment of time, money, and effort have paid off.  He likes high school.  His teacher’s say he’s a pleasure to have in class.  He doesn’t need me to be his social secretary any more.  When he was young, I wasn’t quite sure he’d ever be able to independently accomplish even one of these goals, so it’s very satisfying to personally witness Jacob’s growth and progress.
But even with Jacob’s success and my knowledge about the supports he needs, there is still a ways to go.  He still perseverates on his special interests.  He rarely has conversations with my husband or me on topics outside of these interests.  He prefers to hang out with his friends at our home instead of venturing out into his community seeking out new experiences.  Yes, even though it’s smooth sailing these days, I won’t know how well Jacob will ultimately do until he graduates from high school and begins to find his way in the world.  And based on the statistics of young adults on the autism spectrum, finding and keeping a job is going to be a huge challenge for Jacob.  Only time will tell if he will buck the trend in this area.

As a parent of a young adult who is doing well, I can honestly say it just takes a leap of faith and unending determination by the parent for their child to reach the goal of a successful transition to adulthood.  The eye on the prize is an independent young adult who is in charge of all areas of his life, who has a social circle of friends who truly value him for the unique individual that he is, who can advocate for himself and not be taken advantage of, and who is a productive citizen within his community.  In other words, he can live where he wants, work in the job he desires, and has people in his live that love and value him for who he is.  I know this is doable.  It just takes a little longer than either you or your child would like.  Patience is a virtue, and for every parent of a child on the autism spectrum, it’s not just a nicety it’s an absolute necessity.