Taking the Awe out of Autism

Welcome to the Autism Community! You may not have wanted to join, but now that you are here, you will connect to and develop friendships with a lot of cool people that understand what you are going through. The experience will definitely change you, and if you let it, you'll become more accepting and understanding of the differences in everyone. Remember that you child is still the same wonderful child as before the diagnosis. Appreciate his or her uniqueness, differences, and gifts just as you would if your child did not have a diagnosis. Autism is a neurological difference in the wiring of the brain. It's not a disease or sickness and usually the developmental level of a child with autism is 2/3's their chronological age. Keep this in mind because your son or daughter will most likely take a bit longer to reach their milestones and maturity level. With a lot of love and support, your child will get to where he or she needs to be. It will just take longer than yo...

I once subscribed to a prominent newsletter that publishes information about autism resources in Southern California.  In the last issue that I received, an organization was included whose acronym ended with the letters "c a" which stood for "cure autism".  I contacted the editor of the newsletter and let her know I thought using the term cure when referring to autism was not a positive viewpoint.  She responded that she did not agree and had no problem including any organization in her newsletter with the mission to cure autism. Now, I respect opposing viewpoints that differ from my own as long as that opinion isn't meant to harm or infringe on the rights of others.  The autism community is filled with individuals from all walks for life with varying ideas on a variety of issues, some of which I agree and some which I don't.  I try very hard not to judge others about what they believe as long as those opinions are not ...

Last year, this article was published in the on-line content of Johns Hopkins University Press "Narative Inquiry in Bioethics Project Muse".    Here is it in its entirety. As Jacob’s mother, I made it a priority to make sure Jacob always had what he needed.  Today, the result is a Jacob representing over 15 years worth of love, patience and so many supports, services, and therapies that I can’t quite remember them all.  He’s a confident young adult.  He attends public high school and is on track to graduate with his class next spring.  He has a part-time job at Best Buy through his school’s Workability program.  He has a few friends with which he frequently interacts and plans weekend stay overs at our house.  He manages all of his school work on his own with no supports from professionals or me.  He even advocates for himself at his annual IEP.  By most accounts, Jacob is a success. While I know that the combination of all the prof...

As Jacob has now graduated from high school, he's planning for the next step in his life.  As much as he would like to find a job, have a girlfriend, and move out on his own, he has absolutely no idea on how to accomplish any of these goals. So far, I've had to support him in everything that he's doing.  I've helped him apply for SSI which he is now receiving.  I helped him register to attend a local community college and make an appointment with the DSPS counsellor.  He didn't know what classes he wanted to take, so we reviewed the class description of every class that the school offers, and I mean every single one, until we found a few that he'd like to enroll.  I helped him find an internship at a local doggie daycare, and if he does a good job, the owner might consider hiring him for a permanent position. So, Jacob is doing fairly well, but without my support, none of it would be happening.  While I'm happy to help, the entire experience shows m...

A month ago this Friday, Jacob put on his cap and gown and walked on stage to get his diploma from Culver City High School.  That was definitely one of my proudest parental moments. Now the fun really begins - how to plan for the next stage of Jacob's  life.  At this point, he's unsure if that includes college or trade school, but one thing is for sure: he will definitely need to find a job.  I would love for him to find something part-time while he makes up his mind what direction his life will take. Jacob and I were extremely lucky to have a great, supportove staff at CCHS including his awesome Workability instructor, Dan Phillips.  Over the course of Jacob's high school enrollment, Dan placed Jacob in three Workability jobs and took his students on field trips to several local colleges.  They also visited the local Department of Rehab office, and Dan was kind enough to summarize the meeting in an email to me. These were his notes from the mee...

Raising a child is challenging, special needs or not.  Throw in difficulties with sensory integration, executive functioning, and social thinking and those challenges can at times seem insurmountable.  I remember there were days when I could hardly wait until Jacob went to sleep so I relax and collapse on the sofa.  The end of the day just couldn't come soon enough. So is it any wonder that we as parents with children with autism forget that there is life beyond autism?  We are under so much pressure to make sure things run smoothly at school, that all of the doctor and therapist appointments are kept current, and all of our bills are paid and not past due.  So for Jacob, I considered being his caregiver as my part-time job.  Besides being his mom, I was his personal assistant keeping his calendar, finding him competent service providers, setting up & facilitating play dates, and making sure everything was prepared for the next IEP. It's a lot ...

About a month ago, I sat in on Jacob's 17th and last ever IEP.  He's all set to graduate with a diploma this spring, and by all accounts, everything is on track. He’s showing up on time to all of his classes, he completes all of his homework on his own, he actively participates in classroom discussions, and he has a peer group to which he connects at school.. He’s volunteering in the library to complete his community service hours, and he just stared his third Workability job, a repeat of the same job he had last year at Best Buy organizing and stocking shelves. One area that I know Jacob still has difficulty is making initial connections to others. He has friends at school, but he has not made any meaningful relationships with his supervisor or the coworkers at his Best Buy job.  Even  though this may not seem like a big deal considering how well everything else is going, this is a very important skill that Jacob will need to develop in order to successfully...

I love having  a mantra.  Don't sweat the small stuff  and it's all small stuff, I used alot when Jacob was a youngster.  Everything is going to be alright.  That is my favorite one right now; I even imagine  Bob Marley  singing it.  But at times, this one is a bit harder to embrace in regards to Jacob's future even though by all accounts it's smooth sailing these days. As a parent of a child with an autism spectrum disorder, I took a lot on faith while Jacob was growing up.  That the expensive bi-weekly speech therapy was really worth it.  That his classroom aide was truly dedicated in her job supporting him.  That eventually, he would mature into a productive, happy, and independent young man. Now that he is 18, I can see that most of the time, his behavior shows that he greatly benefited all of his interventions.  I can now see that he has the ability to successfully transition to adulthood and possibly do it well. ...

Life certainly gets in the way at times, and, for me, it's doubly true for this blog.  I invite you to check out any of my past posts as listed to your left, but here are the top in order of views.  Enjoy & I promise I'll be back soon. Please Don't Tell Your Child to Look Me in the Eye Autism 101:  Interview with Dr. Sandra Kaler The Teenage Years are Tough Can't We all Just Get Along   Community

I'm finally back after being away for a few months.  Below is my monthly contribution to Hopeful Parents . In the absence of posting anything new to this website or my blog, I've been busy making many life changes including to getting remarried and purchasing a new home.  This is in no way a complaint - I appreciate all of it, no matter how stressful or overwhelming it may feel in the moment.  My life's journey has involved many roadblocks, and these changes are definitely all positive. One of the changes that has been majorly positive is Jacob.  He continues to do well at Culver City High School. I'm getting great feedback from all of his teachers, he has a few friends, and, through the school's Workability Program, he starts his new job at Best Buy on Monday.  Last year, he worked at Petco stocking and organizing and he did a great job so he's not worried about his new employment.  He's just hoping that he gets to stock and organi...

Here's my monthly contribution to Hopeful Parents . I hate to break it to you, but your preschooler watching Sponge Bob Square Pants that's not a good thing.  Your cute little child that is now sitting in front of the TV screen will one day turn into a teenager that will want to watch You Tube and anime movies all day. I remember the days when Jacob was little.  Such a beautiful boy and such challenging behaviors.  His bright blue eyes beautifully accentuated his golden blonde hair.  But that sweet angelic face masked the challenges that lie within his small little body.  I look at pictures of him when he had just turned 5 and I remember thinking back then that he if only he wasn't so challenging, if he could just do what people told him to do, maybe he could give modeling or acting a try.  The behaviors caused by his autism prevented that from even being a remote possibility, but I've never let that bother me.  Jacob is a terrific young ma...

S orry I've been away, but I'm really focused on opening the College Internship Program in Long Beach.  Here is my monthly contribution to  Hopeful Parents. It's a quiet Sunday night. My husband is in the studio making music, me in front of the computer on the night my Hopeful Parent contribution is due, and Jacob is in his room building Bionacle figures.  He really enjoys doing this by himself in his room, and he spends a lot of time doing this and watching TV.   I've never really paid much attention to his hobby, until tonight. This is the first time I've sat down and watched him build his creations, and he really surprised me at how good he is.  His pallet of Bionacle pieces is a combination of I don't know how many kits that have been purchased by me or gifted to Jacob over the yars.  He knows the exact piece he wants, then he finds it in the large plastic bin that stores his vast collection of Bionacle pieces in all colors, sh...

My monthy contribution to Hopeful Parents Jacob loves to stay at home and hang out with me.  He has great appreciation for inappropriate TV shows (think Southpark, Family Guy or The Boondocks), and one of his favorite things for us to do together is watch one of his DVDs or stream one of his shows online.  I actually think these shows are pretty funny, and I manage a chuckle or two during each episode.  His buddies also like the shows, so it gives him a socially appropriate reference point with peers. As nice as it is that my son enjoys my company, I am so ready form him to transfer his in-person social connection to someone his own age.  For young men like Jacob, those that are higher-funcioning on the autism spectrum but not so high functioning when it comes to social-connectedness, it's perfectly natural to hang out with the family.  A fun Friday night for Jacob is for me to make popcorn, order a pizza from our favorite pizzeria, and watch one of his pr...

Waited until the last minute AGAIN to write my contribution to HOPEFUL PARENTS  & here it is   One of the things that I deal with a lot is Jacob's appearance. He's what I call a "shulb", always content to wear the same wrinkled t-shirt and sweatpants with holes in the knees.  He likes to limit his shaving to once a week.  His hygiene is pretty good, but he usually uses as little toothpaste as possible and almost every morning he asks me to smell his hair to see if it needs washing.  He's a nice looking young man, but I sometimes I think of how he could have movie-star good looks if only he'd work out and shop for some cool clothes. Jacob and I have been enrolled in a program called  Relationship Development Intervention  for a few years now, and I absolutely love it.  It has really helped to remove the conflicts that used to be common between us.  With the help of our RDI consultant, Chris Mulligan, I learned that I was constantl...

This was my monthly contribution to Hopeful Parents . If you didn't hear anything about Autism Awareness this past week, you must have been living in a cave somewhere in Pakistan with Osama Bin Laden.   You definitely don't watch TV.  You probably don't have a Facebook page.  And you probably don't know anyone with autism, though that is rare nowadays.  With the CDC estimate of 1 out of 110 individuals (it's closer to 1 out of 90 for boys, and in New Jersey it's closer to 1 out of 84), it's pretty much 1 degree of autism separation.  There is a very high liklihood that you are a parent, a sibling, an aunt, uncle, grandmother, grandfather, neighbor, co-worker or classmate of someone on the autism spectrum.  You might just be married to someone with autism, which would explain your spouse's brilliant and quirky mind as well as his eccentric and sometimes difficult behaviors.  The United Nations General Assembly declared April 2 as World Autism A...

T his post was originally published on April 6, 2011   as a featured article for Autism Awareness  at   Moms LA . April is Autism Awareness month, and it’s been amazing to see the amount of awareness that there is today. Autism Speaks has been heading up this campaign, and I must say they have done a super job of spreading the word. They helped shine a light on autism by ‘Lighting it Blue’ on over 1,000 buildings around the world. I’ve been inundated with autism awareness on my Facebook page by some of my favorite Facebook friends (and they know who they are!). I’m a huge LA Clippers fan, and the announcers even talked about autism during the game on April 2nd against the Oklahoma Thunder. The Clips won too. Chalk that one up to autism empowerment! When my son was first diagnosed in 1997, I was anything but aware. Jacob’s behaviors were challenging, but he wasn’t anything like the character in Rainman. Jacob could talk.  He played with other kids. He could be a hand...

April is the officially Autism Awareness Month.  Autism Speaks helped shine a light on autism by "Lighting it Blue' on over 1,000 buildings around the world.  I've received lots of information on my Facebook page.  Celebrities are helping to spread the word as well. But, every family that is touched by autism, awareness is not limited to one month out of the year.  For us, autism awareness is a constant state of being, something you wake up to every morning and go to sleep with every night.  To say that we're aware of autism feels to me like a bit of an understatement.  It's more like we're constantly reminded of autism.  All the time. In the 13 years since Jacob was diagnosed, I have been reminded of autism in many, many different ways. When he lined up his Thomas the Tank Engine trains up in a neat row, train after train after train. When he ignored the entertainment at a birthday party and retreated to quietness of the host's bedroom. Whe...

Here's my monthly contribution to Hopeful Parents . I entered into this parent thing with no real preconceived notions or expectations.  When I was a teenager, I babysat the neighbors kids every once in a while, but I never really had an experience with infants and children younger than 6 or 7.  I was one of the first of my group of friends to have a child, so I didn't get to hang around many Moms and their sons and daughters.  I was not one to plot out my future, so I never had a master plan how many children I wanted or what age I would conceive. Having a child is something that my ex-husband and I decided we wanted, and I got pregnant on the first try. So after we made this decision, it happened very easily and very quickly. Having Jacob is something I've never regretted.  He'll be 18 this September, so he'll be a legal adult with all the rights and responsibilities that go along with it, and, oh boy, is that a scary thought.  He's not graduating from ...