Saturday, October 23, 2010

Night of Too Many Stars and My World so Long Ago

Last night on the DVR, I watched the "Night of Too Many Stars: An Overbooked Concert for Autism Education" hosted by Jon Stewart. It featured featured lots of my favorite funny people and I laughed a lot. The event definitely benefited a wonderful cause.

The actual show was taped at the Beacon Theatre in New York, and the program was broadcast on Comedy Central as a telethon so people could call in with donation pledges. It also featured pre-taped segments highlighting serveral schools and programs located across the country that specialized in serving children with autism. All looked great, and it seemed like the people from these schools and programs deeply cared about and were sincere in their efforts to help. A few parents were interviewed as well and they expressed their gratitute that their child was directly benefiting from the help that these programs offered.

I know from personal experience how difficult it can be to find the proper educational setting for a child with autism. Up until second grade, Jacob attended our local public school and was fairly successful. But the third grade classroom was too overwhelming, so he left mid-year to attend a non-public school that specialized in educating children with social communication disorders. I was lucky because in 2001 there were no other viable placement options that were appropriate for a higher-functioning child on the autism spectrum. Though it was not a bad experience, Jacob eventually left the non-public school in 10th grade and is now enrolled in our local public high school. He's been there for nearly two months, and so far, so good. His teachers are giving good reports and he doesn't seem to hate it. Culver High has a lot of clubs, and he's joined the Anime Club that meets once a week during lunch. Jacob is really good at building figures with Bionacle Lego kits, so I'm hoping he'll also join the Robotics Club, but he says he'll only join one club at a time. This is a typical Jacob response but at least the Anime Club is a start.

For the Too Many Stars event, I was happy to see something so high-profile raising awareness about the issue of autism. It was great to see that more and more programs are being offered to address the educational needs of students on the spectrum. Judging by the increased knowledge and these expansion of programs, times have certainly changed in the 13 years since Jacob was first diagnosed. The day that Dr. Kaler told me Jacob had autism, it now feels like that happened a lifetime ago. It's hard to remember what my life was like when autism wasn't a part of it.

It's true. There actually was a time when autism was not part of my life. Now, it feels like I'm immersed in it. I'm President of the Los Angeles chapter of the Autism Society, and Principal of a school for children with autism as well as Jacob's Mom. Of course, I have other interests, but there doesn't seem to be much time, and at the moment not any money, to do much else. Each day goes by so fast, and I never get an opportunity to finish all the items on my daily list of things to do.

Autism is a big part of my life, and, as much as this is not what I envisioned my life to be when Jacob was first born, I can honestly say the journey has been extremely worthwhile. I never planned my life or my ultimate destination. I can't recreate the past, so I have no idea where I would be now or what I would be doing had Jacob not had autism. Maybe my marriage wouldn't have failed. Because Jacob was so adorable as a youngster, maybe he would have been a top child model or successful actor. He's smart, so maybe he'd be looking at scholarships to attend a top ivy-league college when he graduated from high school. It really makes no difference as these are realities that were never meant to be, so I can't miss what I never had.

It certainly felt good to laugh last night, and it was great to see so many people donating so much to such a worth cause. My own personal connection to autism may have deepened this appreciation, and I think that's a good thing.

In my world so long ago, this would have never seemed possible.

Thursday, October 7, 2010

It's Raining Outside

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.