Sunday, April 17, 2011

Autism Awareness: Not Just for kids.

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 Awareness Day.  I got to thinking about how I've been aware since the day way back in April 1997 when Jacob was diagnosed with autism, and I posted "Autism Reminders".  I'm also a contributing writer for Moms LA, so I wrote another essay about how Autism Awareness happens every month when you have a child with autism.  For parents like us, autism awareness is something we live, breathe, wake up to and go to sleep with in each and every day, 365 days out of the year.  I should also mention that this is true for the siblings of a brother or sister with autism, but Jacob is an only child so I don't have any perspective on this.  A lot of times it runs in families, so I can only imagine what it would much harder it would have been if I had been a single working mom with two kids with autism.  It certainly wouldn't have been double the fun, that much I know.

Now that Jacob is 17 and is graduating from high school in two years, the issue of what he'll do after he exits the public school system is lurking just around the corner.  And if I thought it was rough having to deal with IEPs, the coordination of doctors and speech therapy appointments, and being in constant communication with is teachers, was I in for a surprise.  Because not having in place an adequate transition support plan when Jacob is leaves high school is a cliff that he could very easily fall off. 
For all those parents that have a child with aspergers and high-functioning autism, we are fully aware of the challenges.  If we're lucky and our child is free of any medical issues, we're left figuring out an appropriate educational setting as well as services to address his behavioral, sensory, and social challenges.  If our local elementary school is equipped, we'll have a caring IEP team that will be responsive to our child's needs.  For a few years, I was reimbursed by Los Angeles Unified for 100% of the costs for his private speech therapy.  Jacob received very good OT at school and he had a one-on-one in the classroom that made it possible for him to stay in the class without making it disruptive to the other students.  The aides helped Jacob stay focused in class activities, and they facilitated play with his peers.  Jacob was always invited to birthday parties, and the teachers always liked him.  In retrospect, I was very, very lucky to have the administrators at Marquez Elementary on his side.  
So, when Jacob was little, I considered myself the quarterback.  I coordinated services with the school and his therapists to make sure everyone communicated and worked together.  I was pretty much in control of the situation and that definitely was empowering.  I could facilitate playdates.  I communicated each day with his aide and touched base often with his teachers.  When Jacob left Marquez for a non-public school, I continued to have constant contact with those teachers.  When he left that school and attended the tiny private school that I ran at the time, I couldn't have been more involved if I tried. Then when he enrolled at Culver High this last fall, I had no idea if it would work and to my surprise, it's been a success.  His grades are good.  His teacher's report that he's participating in class and he's interacting with his peers, though he's not making any effort to hang out with any of his new friends.  With my help, Jacob even secured a part-time job at Petco through the school's workability program and the manager reports that he's doing well.   Overall, it's been smooth sailing with no rough patches and he hasn't needed any supports outside of the IEP to make this happen.
So what happens when Jacob leaves Culver High?  No IEP team.  No supports from school.  If he gets his diploma in two years like he is on tract to do, he exits the school system and services from the school district end.  
For many parents, they aren't prepared for this.  They've managed to keep their child in school, be it private, public or non-public, and their child has graduated.  So what's next?  College?  Work?  But what if their son or daughter isn't prepared to handle either one?
This is the dilemma that thousands of parents are facing.  Parents whose child is very bright and has attended the local community college, but he dropped out.  Parents whose child that has no problem getting a job, but he's let go with no warning or explanation.  Their child might be smartest person they know, but he can't even manage to stay enrolled in one college class or hold a job at the local pet store.  Their child is beyond smart, but they don't have the ability to transition to the next phase of their life.  And whose responsibility is it to find a solution?  The parents.  And they haven't a clue what to do next.
So, autism awareness.  There is so much more now than when Jacob was diagnosed in 1997.  That's a good thing.
But the autism awareness for the future for our young adults on the autism spectrum?  We're not quite there.  And this is something of which  I am acutely aware.

Tuesday, April 12, 2011

Autism Awareness is Every Month when Your Child has Autism

This 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 handful, but nothing about his development really alarmed me. His pediatrician didn’t even pick up on anything. I was the first person I knew to have a child diagnosed with autism, so it was a new world that I was entering. When it happened, I didn’t know other parents that I could ask questions or people to go to for support.
                This picture was taken right before Jacob was diagnosed.
In the 15 years since I heard the words “Your son has autism”, I’ve been aware of autism each and every day. There never has been a moment when I’ve not been aware. It’s the same for every family that is touched by autism. For us, autism awareness is a constant state of being, something we wake up to every morning and go to sleep with every night.
It’s great that the Empire State Building was lit up blue for autism. In terms of awareness, it was great to hear Ralph Lawler mention during the Clipper’s game that the rate of autism is one out of 110 individuals. I am happy that I’ve made so many nice friends on Facebook from my involvement of the autism community. This is all good stuff.
But to be aware of autism, to really know it’s effects, that’s something you have to experience firsthand. For every parent of every child with autism, we’re not just aware, we live it.
Yes, I have been aware of autism every day for the last 13 years. And for every parent of every child with autism, they are never not-aware.
For parents like us, it’s Autism Awareness every day of every month, 365 days of every year

Saturday, April 2, 2011

Autism Reminders

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.

When he would sprint away with hardly a moment's notice when we were out in public.

When were judged by anyone within eye sight when he was misbehaving because he was overwhelmed due to his sensory issues.

When I saw that he had difficulty making and maintaining friendships.

When I got the speech therapy invoice at the end of the month and realized how expensive it was.

When my family pretty much ignored him and lent us no emotional or financial support because they didn't truly understand or accept that he had a disability.

When I had to closely monitor him at the indoor gym so I could intervene if another child bullied or picked on him.

When I had to speak to his one-on-one classroom aide each day to see if he had a great day, not so great day or extremely difficult day.

When I had to coordinate the schedule of Jacob's therapists so they were available to attend his annual IEP meeting.

When I couldn't accept a full-time job because he needed me to take him to appointments, play with him when he got home from school or most importantly to be present in his life because no one else would have the same dedication as I would.

Yes, I am autism aware because I have been reminded of it every day for the last 13 years.  And for parents like me who also have a child with autism, we are never not-aware.