I contribute a blog entry once a month to the HOPEFUL PARENTS website, and this is what I posted for October. My last blog, Can We All Just Get Along, was not well received by several people in regards to my comment about how parents of higher functioning children don't have an easier time than those of lower functioning children, so I thought I should post it here as well.
It's a cold, rainy day in Los Angeles and a typical afternoon in our house. Jacob and I will interact in a bit, but right now, he's in his room and I'm in front of the computer.
Jacob loves to stay home, and he couldn't be any more different than me at his age. When I was 17, the last thing I wanted to do was hang out with my mean and emotionally unavailable mother. I had places to go, things to do, people to see. Jacob's favorite place in the world is home, which I have to admit I kind of like. I know where he is, and I know that he is safe.
But sometimes I wonder will he ever be motivated to go off on his own? Will he ever have a desire to try new things? He has two friends from his previous school and for him that's enough. He doesn't want a girlfriend. New experiences are of no interest. Watching the same movie over and over again is fun. Hanging out with his mom is not an embarrassment.
When I look at Jacob, I see so much potential. He's smart, but he doesn't apply himself like I think he could. He's a good looking young man, but jeans, sweats and a t-shirt are just fine as his everyday wardrobe. He's kind hearted, but he's not one to want to help others.
Because so much of my energy has been focused on the present and getting him the services that he needed, I gave up having any expectations of him a long time ago. He is who is his. He's Jacob. He's low energy. His speech is monotone and not very expressive. He has limited interests and doesn't like new things.
When I think about Jacob's future, I find myself in an in-between place of hope and worry. On the hopeful side, I see Jacob in a job he loves, friends he likes and a home of his own. On the worry side, I see a young man that is content in his aloneness with no desire to change. I see Jacob's future where he is struggling to pay his rent. I see him as an adult that is ill-equipped to successfully live his life.
Am I wrong in wanting Jacob to change, to be ambitious and to want to live his life to the fullest? Am I wrong to judge my son because he's not like me in wanting to have a lifetime of adventures? Or should I just accept that I'm fortunate that Jacob isn't in trouble with the law or being bullied in school?
I know in regards to the last question, some parents would think that their lives are much more difficult than mine. I know that the parent of a child that can't communicate or express his feelings has immense struggles. I can talk to Jacob and he can verbalize his thoughts, no matter how negative these might be. I can only imagine how hard it would be to never be able to have a conversation with him. So yes, compared to the difficulties of a parent of a highly impacted child, I am fortunate. But even though Jacob's disability may not be as severe as that of another child, that doesn't mean my concerns for Jacob are trivial. I completely respect and understand how hard it is for the parent to have child that can not reciprocate with any type of interaction. My heart aches for any parent that will never hear their child say the words I love you or has a child with behavior so severe that it requires constant monitoring. I run a school for children that are very impacted, some that are non verbal or unable to express any emotion. I see each day how hard it is for these parents. But because Jacob's disability isn't as severe does not mean that my feelings of concern for Jacob aren't valid. I think that when we as parents compare the severity of our own child's disabilities to the children of other parents, it serves no purpose. Acknowledging that we all have feelings of worry and concern and supporting each of us with the struggles that we as parents face each and every day, I that think will make our community stronger and all parents within our community feel less alone.
So yes, I am fortunate. Jacob is a wonderful young man, and I completely accept him as he is. But am I content with this? I think I am, but secretly, I do think that I want more. Maybe it's fair, maybe it's not, but what I think doesn't really matter because Jacob is the only one that can determine how happy he really is.
The rain has finally stopped, and it's a typical evening in our house. Time to eat dinner with the Jacob then we'll watch a couple of TV shows. It may not be the ideal way that all families share experiences, but this is the way that Jacob enjoys interacting with me. For that, I am happy.
Sometimes it's the simplest things that bring us the most joy.