Tuesday, January 12, 2016
A New Year should bring excitement and refreshment.... but 2016 does not do that for me.
See this year my sweet Jared will turn 18.
And it scares me to death....
I can't think about it too much, because then it becomes all I can think about.
But I also have to think about it, as there is so much to do to prepare for that birthday.
At the age of 18, Jared will officially have the right to vote - and maybe that's not so bad. There are times when I think he knows more about what's important in this world than most people do.
Age 18 also brings with it many other rights that most parents don't think about, but that I must think about.....
the right to make your own educational decisions
the right to make your own medical decisions
the right to enter into a legal contract
As a family, we are having to think about and have some really tough conversations.
Conversations that will have to turn into decisions this year.
Here is what I know about Jared -
... he currently needs help making informed decisions, and will probably need that for a long time,
... he currently would always choose "NO" on any question of any type of medical procedure, even if it was a lifesaving procedure, because of his lack of understanding and because of his fear of the unknown.
In the past few years, I have had to learn some things about power of attorney and guardianship. Neither of which brings about thoughts of rainbows, or unicorns, or smiley faces.
Since the time Jared was first diagnosed with autism, I have found myself experiencing times of grief.
(As you know, we have had much to celebrate in Jared's life! But there is also another side to all of that - not to take away from that - but to share the reality of living with a child with autism.)
When Jared was young I grieved the type of relationship that I had dreamed Jared would have with his older brother and younger sister.
When Jared was in elementary school I grieved the childhood I wanted him to have - the one with friends, and sleepovers, and birthday parties.
When Jared was in middle school I grieved the educational goals that we had to decide to give up, as we moved Jared from the SOL track in school (being able to get a diploma) to the "other" track (leaving high school with a certificate of completion).
Now as he is in high school I have grieved the thoughts I had of him dating, driving, and planning his college choices.
2016 will bring about a new grief - as we have to make choices around what types of decisions Jared will be able to make on his own as a legal adult and what of those rights we as his parents will have to have taken away from him. A process that involves lawyers, a court, and literally suing your own child.
Just one of those tough pieces of the reality of autism in our family.
the kind that literally make your heart ache.