Monday, September 13, 2010

Can't We All Just Get Along?

One of my recent blogs, What I Believe and What I Know, was featured on the Autism Speaks blog, In Their Own Words. I began my essay with a short description of all the activities that Jacob and I used to enjoy when he was young. My goal was to stress that sharing quality family time together is beneficial for both parents and children. My essay went on to explain my thoughts about having a child with a disability and how I’ve come to understand the many ways in which Jacob's disability has given me the wisdom to see beyond it.

Autism Speaks also features the blog on their Facebook page; for my essay, over 500 people hit the "like" button and almost 100 people posted positive reveiws in the comments section on both Facebook and In Their Own Words. “Thank you for sharing”, “”I really connected to your words”, “This is a wonderful testimony”, and “Beautifully described” were just a few. Everyone loved my essay, everyone that is except for one reader named Andy. He wrote, and I'm quoting his words exactly, “I think this post is insensitive. Trips to Europe, museum visits all over the world, actual conversations with your child. So few families are that fortunate.”

Wow, I thought. That was not my intension. Of course, my first impression was that Andy must be on the spectrum; why else would he respond so negatively when over 90 comments were so positive. The Centers for Disease Control estimates an Autistic Spectrum Disorder for boys is 1 in 90, so I figured that 1 negative comment out of nearly 100 positive ones was proportional to the incident of Autism in the general public. But I as further contemplated Andy’s words, I thought that was a more serious issue within the Autism community.

As any parent of a child with Autism knows, individuals on the spectrum present their disability in very different ways. On one end, there are children that are severely affected, unable to communicate and many times having co-concurring conditions which leave them highly impacted. Individuals on the other end are labeled as having Asperger's Syndrome or high functioning Autism. As young children, they look much like their typical peers. They may do well academically, but put that same child on the playground where he has to interact with his neurotypical peers, and he's lost. He doesn’t understand social cues. He may not be able to read facial expressions. He's the child wandering around on the playground by himself with no friends. Hopefully, with intervention, the child will acquire socially appropriate behaviors. Unfortunately, even with these interventions, a large majority do not transition successfully into their communities after they exit high school or college. This is true across the spectrum, no matter what their diagnosis, their level of functioning, the type or the amount of hours of services they've received. As young adults, the majority lack meaningful employment or close friends or personal relationships. And a very small number, as little at 5% or less in some studies, live independently.

I know firsthand the obstacles of raising a child with a disability. I know how frustrating it was when Jacob had a difficult time in the classroom. I remember how rigid his behavior could be. I was lucky he liked to hug and snuggle. I can recall how great it felt when Jacob had a great day at school. I also remember the sweet child that he was and still is, though it is now masked as that strange creature called a teenage boy. But do I feel superior because Jacob is less impacted than another child with Autism? Am I happier that Jacob can speak because another child with the same disorder is non-verbal? Of course not. If anything, I feel great empathy for those parents that are enduring more difficulties than I faced. I completely sympathize with how tough it can be for the entire family when one member has Autism.

I saw this same sentiment again in a recent post on that same Autism Speaks Blog. The essay was written by an individual with Asperger's Syndrome in response to the way the American Psychological Association (or APA) is proposing to diagnose Autism in the next addition of the Dianognostic Manual of Mental Disorders (or DMS). For those of you unfamiliar, the DMS the book used by professionals to diagnose psychological disorders. In the current edition of the DMS IV, Autism diagnoses are now separated into several subcategories one of which is Asperger’s. In the proposed draft of the DMS V, which is slated to be published in 2013, the APA will be lumping all of the subcategories into one diagnosis which will be Autism Spectrum Disorder. In other words, all Aspies will no longer have Asperger’s Syndrome; they will have Autism.

As an Aspie, she was very opposed to this change. According to her, “it will serve as a mockery to those who are severely affect by Aspergers, and it will attack the identity in which many Aspies take pride.” She went on to say that the Asperger’s label gives an impression of intelligence and ability and that people with Asperger’s are brilliantly gifted and capable individuals whereas people with Autism are thought of as needing institutionalization and not able to live independently. She added that taking away the Asperger’s diagnosis would dangerously stereotype Aspies and the lack of the label will interfere with their ability to be employed or be promoted in their occupations because they will now be associated as having Autism. She supported her opinion with many more details on how the APA was wrong to take away the Asperger's diagnosis, but I'm sure you get the idea. Maybe I was misinterpreting her comments as Andy has done with mine, but it seemed to me if the author thought of herself as superior because she has Aspergers and not Autism.

In my opinion, it is very sad that that Autism Community is so divided. Acceptance, not segregation, should be the goal for all people regardless of their differences. I know I do not look down upon parents of a child that is more impacted than Jacob. I do not feel superior to parents of non-verbal children because Jacob has the ability to communicate. I don’t think that it is better to have a child with Asperger’s than it is to have a child with Autism. I hope that all parents wwill be able to remediate the core deficits of their child’s disability. I want all children, because of their abilities and regardless of their disabilities, to ultimately have the chance to live happy, healthy and productive lives. I want every child to succeed as I hope Jacob will be able to do one day.

As the saying goes, the grass is always greener on the other side. Unfortunately, this is not true when you have a child with a disability. It is true that a more highly-impacted child will take a much longer time to show progress, but that doesn't mean the parents of higher-functioning children will have an easy time raising thier child.  No matter what the issues, it's an uphill battle every step of the way, and the journey that each of us must undertake bears much weight on our shoulders.  I too have faced many challenges with Jacob, but I also feel blessed to him in my life even though at times it was very, very difficult. I don’t regret for one moment what both he and I have experienced. His disability hasn't been something I wanted in our lives, but he is who he is, and I love him no matter what, always and forever.

Jacob will be 17 in just a few weeks, and I've seen tremendous progress since his initial diagnosis at age 3 1/2. For that I am truly thankful. But would my happiness become source of jealousy of a parent whose child hasn't been so successful? I certainly hope not, but, unfortuately, it just might be.

Wednesday, September 8, 2010

What Me Worry?

Jacob will be 17 on the 30th, and it doesn't seem possible that he's grown up to be the young man that he is today. But here he is and here I am. He just starting at the local high school, the first time he's been enrolled in public school in almost 13 years. Me figuring out if I'm returning to college for a Masters in Social Work after graduating with a bachelors degree almost 30 years ago.

I've never been one to plot out my future in great detail, but I have set goals that I've accomplished. I graduated from college and worked in various jobs the entertainment industry. Getting married and having a child was not something I felt like I had to do, but I did by following my instincts, doing what seemed right, and then happily living with the results.

Overall, I'm content with my life. In retrospect there's not much I would have done differently. In high school, I would have been more confident and enjoyed activities I was too insecure to try, like drama and the glee club. In college because I find the study of the mind so interesting, I would have majored in psychology instead of communications. Because the of the failure of the business that Jacob's father and I started, I would have put aside much more money in savings than I did. But there aren't any major changes I would have made in any of my choices.

But when it comes to Jacob, I'm not so sure. I try not to look into the future, because with him, I don't know what that future holds. I do know that I want him to be happy. I want him to find a career that he finds rewarding. I want him to have friends, to have relationships and to get married one day, if he so chooses. I think about his future more than I ever thought about mine. But will he have a future full of all the good things in life? I don't know. And that is very scary.

I love Jacob with all my heart, and there isn't anything I won't do for him. I don't think this makes me a unique parent. I think all parents feel this way, or at least I think they should. I also don't think that as the parent of special needs child, I'm that unique either. Whatever he needed that was within my budget, I got for him. I obtained services from the school district and the Regional Center. I was always volunteered at his schools in the classroom and in the various school fundraisers and functions. I just did what I thought was the right thing to do, just as I've done with all of the decisions in my life.

So, with Jacob, I've put in many hours of planning, meeting, volunteering, worrying. Yes, worrying. Me, the one who doesn't have a master plan, who's made decisions with the instinct of what felt right, worries about the future of her teenage son. What is up with that? Since I've felt confident in the decisions I've made in my life, does this worrying really make sense?

I've spent so much of my time as Jacob's Mom making sure he had what he needed. I've coordinated meetings with professionals, emailed teachers, and involved him in activities. I've looked at placements, attended school district meetings, researched summer programs, arranged playdates. I've spent hours and hours of my life making sure that he was getting what he needed.

So, his upcoming IEP is scheduled in just a few weeks, and, for the first time, Jacob will be attending. I will be there, but this will be the first time he'll be advocating for himself. We've been discussing the meeting, and I'm letting him know that he'll need to communicate his needs. He's really motivated by money (hey, aren't we all?), so we've been talking about this alot. I'm telling him that if this information comes from him, it will have more meaning. I'm trying to get him to decide what he wants and what he'll be asking for. How successful will this be? I have absolutely no idea.

Will this be the beginning of his taking ownership of his life? Is this the beginning of finally being able to sit back and watch my son blossum into adulthood? I certainly hope so. I know I can't compare Jacob to me at his age. When I was 17, I was going out with my friends, attending to Day on the Green concerts at the Oakland Colliseum, and starting to discover the joys of partying. I gave my parents a tough time because of my behaviors, but isn't that what being a teenager is all about, separating from your family so you can form your own identity? Jacob couldn't be more like I was. He's content to sit at home and hang at the computer. I'm sure if he could, his preference would be to live with me the rest of his life. For me at 17, staying home with my crazy Mother would have been a fate to be sufferingly endured. For Jacob, this would be a comfortable existence of not making decisions and letting his Mom supply him with all the comforts of life.

So yes, I do worry. I worry about what Jacob will do with his life. I worry about what Jacob won't accomplish. I worry that all of the years of planning and preparing will have been for naught. I worry that Jacob, the once beautiful baby boy, the now handsome young man, will be alone and unemployed. I worry that I will have failed as a parent.

Does the worrying solve anything? I know it doesn't. But do I still worry? Yes, I do.