Taking the Awe out of Autism

As humans, we like to laugh.  We value wit.  We are drawn to people that we think are funny.  It's a compliment when someone tells us we have a good sense of humor. Because we are not robots and are unique individuials, what is funny is a very subjective thing, viewed through our own individual prism influenced by everything that is unique to our life.  Culture, heritage, age, ethnicity, social economic status and where we live, all of these things and more, combine to give us our take on what is humorous.  What makes us laugh depends on our life experience and circumstance, and what I think is funny may be perceived as rude or insulting to someone else. Jacob loves to be funny and he tries very hard to make me laugh.  Two of his favorite shows are Family Guy and South Park, which is pretty typical for the kids in his culture.  Yeah, I know what you are thinking.  Those shows are pretty inappropriate and politically incorrect.  But as any parent of a teenager with autism will t

This is my December contribution to Hopeful Parents . The life of a Mom of a teenager with autism is many things. At times is can be challenging. Other times it can be frustrating. Sometimes it can be both at the same time. But one adjective I would never use is boring. This is never a word I would use the describe the life in our home. 13 years have passed since the day that I heard the words "Your son has autism", and now  that day seems like a distant memory. I've gained much wisdom through the years, and whenever possible, I try to help other families as best I can. I'm President of the Autism Society of Los Angeles. I’m starting a support group in my community for parents of children with autism. In a very real way, Jacob's diagnosis has given a purpose to my life that wouldn’t have happened had he not had a disability. As a young child, Jacob’s behavior was very challenging, and sometimes, I didn't know how I would manage to get to the end of the

The word community can mean many things. It can be the neighborhood in which you live. It can be the school that you attend. It can be a group of people in which you share a commonality. Like it or not, having a child with autism automatically makes you a member of the "Autism Community". Like any community, it's members are individuals with their own way of interpreting the world. But unlike many other communities, the way those individuals interpret their world varies widely depending on the abilities of the individual. Autism is considered a spectrum disorder which is why you'll hear it referred to as Autism Spectrum Disorder or ASD. It's a wide spectrum, and the individual's place on it is determined by the person's level of functioning. Generally, those that are non-verbal and severely impacted with co-concurring conditions are labeled as low-functioning, and those that are verbal with an average or above-average intelligence are labeled as h

Experiencing my son's concern about my well-being.  Priceless. Yep, it's the little things in life that make it worthwhile.  Making sure the family is healthy.   Sharing a good meal at dinner.  Watching a favorite TV show with Jacob.  All good stuff.  I've been suffereing from a nasty cold for almost two weeks, and Jacob's seen me feeling stuffy and tired.  Come 9:30 each night, and I've been ready for bed. So, when I was on the computer right before going to sleep, Jacob walks into my office and says "I hope you feel better Mom", it was music to my ears! I've spent so much time working on empathy with Jacob.  Explaining why manners are important.  Insisting  on hearing "please" when he makes a request or "thank you" when I've done something nice for him.  Letting him know my displeasure about something that he may have done or said that wasn't to my liking .  Literally, it's been years and years and YEARS of wor

I'm become somewhat addicted to Facebook as a means of self-expression. When I find interesting articles or sources of information, I like to post it on my Facebook page so I can share with all 257 of my Facebook "friends". I also like to repost on my Facebook page interesting articles from these same friends. Of course, only a handful of these Facebook friends are actual friends. The rest are people that I used to know and have reconnected, I've "befriended" through Facebook or are acquaintances that I've met in actual real-life face-to-face interactions. Hi, nice to meet you. You're on Facebook, great, let's be friends! It's a step up from never having met in person, but it's still pretty artifical in terms of a real friendship. As any parent of a child with an ASD knows, friendships are a precious commodity. I remember I did a lot of facilitating in this area for Jacob when he was young. I enrolled him in social skills classes. I g

This was my last blog for Hopeful Parents. Enjoy! The lives of parents with children on the autism spectrum are very busy. They spend hours and hours researching and finding the treatments that would be most appropriate for their child. They schedule meetings with doctors and professionals. They spend a lot of money on therapists. They arrange playdates, and they taxi their child to appointments. They hope that what they're doing will eventually prove to be worth the time, money, and energy. This was my life when Jacob was young. Now he's 17 and by all accounts doing well. He started at public high school this year and there have been no issues. His report card came back with good grades. All of his teachers say he's engaged and active in the classroom. So I guess all the hours of driving, researching, and meetings have paid off. Or have they? When I look at Jacob, I see a young man with so much potential. When he puts his mind to something, he'll do it. To make

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

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

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,

There are more moms just like me! Autism - Day by Day: CLEANING-UP ATTITUDES ABOUT AUTISM

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 tr

Jacob just showed me that if he studied, he could do well. Over the summer, he attended the AAA driving school and failed both the mid-term and the final exams. Tonight, the class instructor offered retakes of each test, and he passed both. It feels good to be proud of my son for accomplishing something. He’s never been motivated to study, and this is the first time he’s applied himself and succeeded. Next is the written test at the DMV, so he'll have to study some more to pass. That test is 60 questions and he can miss no more than 8 questions. He’ll have up to 3 opportunities to retake the test if he fails. I’m seeing other bits of emotional growth with Jacob. It’s really nice to see him show interest about what I think and how I feel. He’s had a week to study for tonight's tests, and he's not been trying very hard. I’ve been telling him if he did his best, even if he failed, I’d be proud of him. But, if he didn't study and failed, I’d be disappointed. A

When Jacob was diagnosed at age 3 1/2, I was fortunate to receive a lot of services from both LAUSD and the Westside Regional Center including speech and occupational therapy, in-home behavior support, a one-on-one classroom aide for several years, many hours of respite, and summer camp placement when school was out. Everything was provided at no cost to my family, and most were freely offered without a request from me. I think my situation was somewhat unique as some families of children with special needs that attended school with Jacob had to go to court to get some of the same services. So I was extremely fortunate that I was able to get what I needed for Jacob without much of a struggle. At that time, we lived in beautiful and affluent Pacific Palisades, a Los Angeles coastal community situated between Santa Monica and Malibu. I'm sure the income level of the area is not much different today than it was when we moved to the neighborhood in 1994, and it may even be higher

Jacob will soon be starting 10th grade at Culver High School, and he's not really concerned or excited about it. In fact, he doesn't seem to act like he cares much at all. He's typically pretty low in regards to his own internal motivation or enjoyment levels and anything outside of U Tube, the internet, movies, South Park, Family Guy, Steven Colbert and hanging out with his pets is something he considers to be a chore and not something that could be a potential source of fun. He's already made up his mind that High School is going to be boring. He's not happy about the 8AM start time and the homework that he'll have to complete each night. He has two buddies from his previous school that he regularly telephones and has over for sleepovers at our house, so new friends don't interest him. He thinks girls are ok, but he doesn't care about a girlfriend. So Jacob is totally at ease with the prospect of starting a new school. Me, on the otherhand, no

I remember when Jacob was diagnosed, one of the first services I implemented was speech therapy. Jacob was verbal, but he needed help in learning how to use his speech. Beginning at age 3 1/2, he was taught concepts like rhymes, antonyms, synonyms, and the basic usage of speech that he wasn't able to master on his own.  One of the areas his therapist targeted was Jacob's lack of eye contact, something common for children on the autistic spectrum. I was taught early on to constantly remind Jacob to make eye contact with anyone who conversed with him. I witnessed a mom doing the same thing on Saturday with her young son. Each month, the Autism Society and AMC theatres nationwide have a monthly Sensory Friendly Screening of a newly-released major motion picture. The lights are slightly up, the sound is slightly down, no previews or commercials are played prior to the showing, kids can walk around and parents are free to let their child bring food and toys into the theatre. It

One of the interesting things to emerge from my blog is that parents are emailing asking for advice on what to do with their own teens with Autism Spectrum Disorders (ASD). There are many families in crisis, and they all want to do what’s best for their children. They just have no idea what to do. Their child’s school isn’t equipped to help, it’s tough to find professionals that really understand the issues, and when they do, the fees for the services are usually really high. It can suck to be a parent of a child with ASD. You have this terrific kid but the all cool stuff is masked by his outwardly obnoxious exterior, and you have no idea on how to solve the problem. I received this letter through the Autism Support Network (which is a terrific site with great resources). I was really moved by how tough it must be for this Mom to be a parent to her step-son, and how un-empowered she felt. I’ve changed the name of her and her step-son so I can honor their privacy, but I’m absolutely

I really enjoyed being Jacob's Mom when he was a small child.  I was fortunate that at the time, my business was sucessful and I was able to work on my own schedule.  We spent quality time together doing a lot of kid-oriented activities. Things changed when he was about 7 when the business started to tank. I’d soon have to find employment that allowed me to work full-time and to also still be Jacob's primary caregiver, and it wasn't easy. But in his early years, I had the luxury of being a full-time Mom and I loved it. We had a lot of fun times – visits to the beach, the various parks in the area, Museum of Natural History, Los Angeles Zoo, Long Beach Aquarium, Legoland, Disneyland, Universal Studios, Magic Mountain, and more. One amazing vacation took us to Switzerland for 3 weeks, and Jacob spoke about it for years afterward. Because money wasn’t an issue, I could do these things and focus solely on Jacob. Though his behavior could be difficult at times, I remember tha

This interview with Dr. Sandra Kaler was conducted in 1999.  She was the first doctor to assess and diagnose Jacob, and her support was invaluable.  She directed me towards Los Angeles Unified School District and the Westside Regional Center for support services that were a tremendous help for Jacob.  Today, the California state budget is in crisis, and many of the services that were  given to Jacob back then may no longer be available.  But that's a blog for another time. Dr. Kaler is a developmental and child clinical psychologist who lives and works in Pacific Palisades, California and has had her own practice since 1992. Dr. Kaler has been a resident of Pacific Palisades since 1984 where all four of her children attended school.  Previously, Dr. Kaler was a nursing instructor at the University of Alaska, Anchorage and UCLA. In this interview, Dr. Kaler gives a thorough overview of Autism, and should be of help to anyone wanting to learn more about the subject.  I did this