Wednesday, September 7, 2011

Don't Let Your Babies Grow Up to be Couch Potatoes


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 man who will find his way one day.  Hollywood probably would have not been a positive influence anyway.
Jacob was an in between kid that his behaviors were too distracting for a class of typical peers but a class that had more impacted kids was not appropriate.  Finding the right preschool proved to be difficult.  The LAUSD classes didn't really have any with peers that were at Jacob's developmental age and without an aide in the classroom, Jacob couldn't attend any private schools.  I searched every promising preschool within a 10 mile radius that I thought would be a good fit and would accept Jacob with a one-on-one, and  I finally located an excellent one in Santa Monica.  By chance and with a lot of phone calls, I also found a young woman that had been a teacher at one of them and she was now looking to work as a private behavioral aide.  She turned into a lifeline to being in a mainstream classroom for Jacob. After preshcool, she stayed with him for an additional year through kindergarden; during her time with him, Jacob never had any major disciplinary problems and even developed a few friendships along the way.  
Looking back, I know how lucky both Jacob and I were.  Along with his aide, Jacob's public elementary school always supported him.  For a while, LAUSD even paid for private speech therapy and gave him high quality occupational therapy on site at school.  The district occupational therapist that worked at Jacob's school when he started first grade was really amazing.  To the first IEP that she attended, she came with a OT catalog and said she was going to order a weighted vest for him to wear in the classroom.  She also showed me how to do OT techniques at home, gave me additional reading material on senory integration, and even set up a sensory room in an empty classroom at the school.  She was supportive in every way and always inciteful about what Jacob needed at the time.  I am even appreciative to everyone at Marquez Charter Elementary that worked so many hours to support him. Back then, he could a handful, but because he had such strong supports, Jacob was liked enough by peers, teachers and administrators in spite of it.  
I also made sure I did what I could to help the teachers and the school.  I figured if my son was going to make life difficult for the people that worked with everyday, they better like me too.  I thought that if I voluteered to drive on fieldtrips, helped to organize the class parties, got a lot of stuff donated and wrote cop for the catalog for the school's silent auction fundraisers, the teachers and administrators would be more understanding of Jacob when he was being challenging.  I know it made a difference for the better. Jacob was always accepted and never ostrisized, even on his most challenging days.
This was Jacob.  A gorgeous cherub-faced youngster with behaviors that were not severe but challenging enough that he required to be monitored constantly.   So what is the perfect thing to help calm a child that wants to explore and get into stuff when you just want to get something finished, like balance your checkbook or do the laundry?  Thomas the Tank Engine.  And don't forget his friends Barney, The Wiggles (which I have to admit I kind of liked), Dora the Explorer, and many others that I can't even begin to remember.  And all innocent enough, at least I thought at the time.
Now fast forward twelve years later, and Jacob is just a few weeks shy of turning 18.  And what is his favorite thing to do - watch TV, videos and You Tube.  Yes, he's graduated from Disney videos to Seinfeld, Curb Your Enthusiasm, Tropic Thunder, and too many Japanese animated videos to mention. Some I like too. We're both fans of the Big Lubowski, and for his next birthday, we're going to watch the movie with some friends then go bowling at the alley down the street.  
It's not all completely bad.  We like a few of the same shows and sharing time watching these together is a ritual in our house.  We both love Futurama and Community, and Jacob enjoys viewing them with my husband and I.  Watching quality television is something I really like too, but it's probably not a positive thing to get my obsessive compulsive soon-to-be 18 year old son in the habit of even more TV shows, no matter how good I think they are.  Still, I'm glad that we can share something together that we both really enjoy.
Back then, had the Magic 8 ball shown me the Jacob of today, I know I would have turned off the TV and played with him.  Always.  I was a stay-at-home Mom, so I had the luxury of time.  But back then, I thought, a little TV won't hurt.  But I was wrong.  My cute little boy grew into a not so cute teenager who has grown into a slightly overweight young adult that is obsessed with electronic forms of entertainment.  Letting Jacob watch a little Sesame Street when he was little, I thought how bad could that be.  But the habit of spending time in front of a video screen or computer monitor, it's mushroomed into an addiction that has sucked Jacob in.  It happens to typical kids all the time.  Just throw in some social communication challenges and the allure of the video and the internet, something that does the same thing the same way all time and isn't unpredictable like people, it'll absorb your child's attention more and more.   And as the habit grows into an addiction, it'll become more and more intense as the years fly by.
So, to all the Moms of the world with the adorable 3 year old child with autism, TURN OFF THE TV AND THE COMPUTER!  Play with your son.  Spent time doing activities in the community and share activities together. Forget about washing the dishes, opening the mail, or making one last call before bed.  Everyday for as long as you can stand it, have your child spend the majority of his time with you doing anything with you besides sitting in front of the boob tube.   I promise, you won't regret it.

Sunday, August 7, 2011

Sunday on an August Night


Sorry 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, shapes, and sizes, and he builds these pretty cool Transformer-looking figures.  They can even stand-up on thier own. 
I know Jacob could develop this skill into something markable on the job market, and the Robotics Club at Culver High could be a great place to do it.  I know that if he gave it a try and stayed with it, he'd like it and do well.  But all of the last school year, no matter how hard I tried, I couldn't convince Jacob to spend a couple hours on a Monday afternoon checking out a meeting.  Nothing worked - not logic, positive reinforcements, bribes, enticements, or promises, nothing could motivate Jacob to attend just one Robotics Club meeting to see if it was something he would enjoy.


This has to be one of the most frustrating aspects to being Jacob's Mom, seeing him not try things that I know he'd like and succeed.  He has so much potential, and, with the right support and his own internal motivation, I know he'll be able to accomplish anything.  But when I come up across his lack of desire to try anything new, it's always so frustrating.  
I understand why he's making that choice in regards to the Robotic Club, but this is an instance where I really notice his disability.  He's doing really well in so many areas.  His first year at Culver High went well, and the Manager in his part-time job at Petco really likes him.  We don't have as many conflicts, and when we do, he almost always comes to me later to say he was sorry for being so difficult or getting angry.  I see so much growth from where he was just a couple of years ago.  I'm really proud of him, and I expect him to continue to grow and mature.
But in this one area, it's still a challenge.  I still see how rigid his is.  I see how he still needs to learn more about having healthy relationships.  For him to reach his fullest potential, he needs to be at the College Intership Program so he can be immersed in social thinking.  He'll need support in executive functioning and academics.   He'll need to be living with a roommate surrounded by peers he respects and wants to have relationships.  And, last but not least, he needs to be educated on eating well, good nutrician and exposure to regular exercise.  The last one I really let slide.  At least now I'm with a program that can help fix in Jacob what I couldn't correct myself.  Lucky me!
Jacob has come so far.
As he sits in his room on a calm Sunday night, I appreciate all that is good in Jacob's life.  At the same time, I imagine the good that might be.


Thursday, June 9, 2011

Motivation to Leave the House!

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 preferred movies like Tropic Thunder or The Big Lubowski.  This is enjoyable for me too, but Jacob will be 18 in September.  The summer I was 18, I already had my driver's license, a car, and a part-time job.  I was paying my own way and making my own plans, and none of these depended on my Mom to make it happen. 
I wonder if this will ever happen with Jacob. 
Mind you, he has made tremendous progress, and his difficult past behaviors now seem like a distant memory.  When he was younger, his impulsiveness was challenging and he'd often do things with out thinking.  Now, I can't remember the last time he run away from me in a crowd or got upset when he didn't get his way.  He's doing well at public high school, he's getting rave reviews from his manager at his part-time Petco job, and he can walk home from school on his own without me having to worry.  This is all good stuff, and I'm very proud of him for having accomplished so much.
Not that I would change anything from the past.  I've been there for Jacob because he needed me to be his advocate, and, given the same circumstance, I'd do it all over again in a heartbeat.  And I think I that for the most part, I've made the right choices even when most of the time it was a financial struggle.  It's almost impossible to work a full-time job when you have a child with special needs due to the demands of your child's care.  In retrospect, it's difficult to remember how exactly I did it.  But I did, and today both Jacob and I are doing really well.  I'll give myself some credit for that.
But, and I say this with all affection, I need him to need me less!  If you count preschool, Jacob has been in school for 13 years, and during this time, I've been in charge of Jacob.  I always saw myself as the quarterback who called the shoots.  For Jacob, this including coordinating doctor's appointments, arranging playdates, attending IEPs, and buying holiday gifts for his team of teachers, aides, therapists, instructors, tutors.  And, as it is now, I'm still arranging playdates with his peers from high school.  But now they're called get-togethers, not playdates.  
Jacob and I have done our time, we've perserved and we've survived.  Hurray for the good things!  But I'm looking forward to the day when Jacob picks up the phone and makes plans to go out with a buddy or a girlfriend without any prompting or assistance from me

Independent from Mom just like a typical teen would do.
That will be a happy day indeed!

Saturday, May 7, 2011

Motivation to Look Good

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 constantly telling Jacob what to do.  Jacob didn't like this, and his response was to object and resist pretty much anything I requested.  Now after a couple of years with Chris, I feel a lot more relaxed in our relationship.  I'm definitely more empowered as a parent.  When I make a request, Jacob sometimes objects, but now he's much more likely to agree.  Our relationship is by no means perfect, but at least we're not constantly butting heads the way we used to.
RDI is a program where parents work with a certified RDI consultant to re-establish the parent-child relationship through shared activities. These positive experiences create new neuropathways in the child's brain, and from these, he learns how to become more flexible and adaptable, stop being cognitively rigid, perceive how others feel, and adapt to change without becoming overwhelmed.  
I know a lot about RDI.  I ran a tiny private school for a couple years and Dr. Gutstein and Dr. Sheely, the two doctors that developed the program, were my bosses when I first started.    I always recommend RDI to parents, though it is pretty expensive.  In Los Angeles, the cost of the consultant's fees are usually over $100 per hour, and the subscription to the RDI website, which is required to be enrolled in the RDI program, is about $1200 per year.  Luckily, the Regional Center has been covering the Chris' fees and I received a scholarship for the website subscription.
So, with my RDI mindset, I don't bug Jacob about his appearance anymore.  Thanks to my work with Chris, I've learned change the way I communicate with Jacob.  I've stopped telling him to wash his hair and put on a nice shirt, because he'd just reject my suggestions.  Instead, I let him know what the impact of his decisions will be.  I tell him that his appearance is a communication to the outside world, and he'll get more respect when he puts some effort into his appearance.  Respect is important for Jacob so I think this idea really stays with him.  I no longer make demands with the expectation that he'll comply.  Now I share with Jacob my thoughts and feelings, and because Jacob knows what I think is important, he'll make decisions that are more likely to agree with me.  And, judging from how much less stress I experience in our relationship, I think it's working.
Jacob is only 17, and he is not interested in a girlfriend.  Doesn't want to be tied down, he says, and I couldn't be happier.  He'll have plenty of time to date in his lifetime.  Most young adults with autism are at a developmental age 2/3 of their chronological age, so I'm guessing around 20, 21 or 22, he'll start wanting to meet girls.  And I'm almost positive that when this happens, he'll wear nice clothes, he'll shave every day, and he'll work out.  When he's truly motivated to find a girlfriend, he'll put an effort into looking attractive, and no amount of nagging or complaining is going to make this happen.  Until Jacob develops the internal motivation to care about how other people perceive him, he'll continue in his shulb-like ways until he develops his own motivation to change.
I'm content to wait it out until Jacob decides to put some effort into his appearance.  
But there is one positive to his appearance apathy.  Shopping for clothes is pretty cheap when all you wear are sweats and t-shirts.  

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.






Monday, March 7, 2011

Trying to Be a Hopeful Parent


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 high school for a couple more years, so until then, he'll still be switching from my house during the week and his Dad's house on most weekends.  But it doesn't seem real that on his next birthday,  he'll legally be able to vote, enlist in the military, or marry.  
He'll also be an adult with autism.  Even though he's a high-functioning and by all accounts doing well, it doesn't make it easier to grasp.  And at this point, I don't know what his future will be.  I've asked him if he wants to great a job after he graduates from high school, and he says he doesn't know.  I've asked him if he wants to go to college and what he'd like to study, and he says not sure.   I've asked him where he'd like to live, with me or with his Dad, and he says he hasn't made a decision yet.  He's given me no clear indication of what his future will be, so I just have to sit back, not get nervous, and hope for the best.  Whatever that might be.
When I was 17 1/2, I thought I knew what I wanted - to make money and move away from home.  I'd already graduated from high school.  I liked to hang out with my friends and go camping,  to the movies and to live rock concerts.  I had a car, so I went on road trips with my gal pals.  I worked in retail stores and restaurants for a while, then I enrolled at the local community college taking courses that I thought were interesting.  Before I graduated from high school, I had a rough idea of what I was going to do with my life.  My parents certainly didn't need to help me figure it out.  
I know I can't compare Jacob to me when I was his age.  I didn't have the challenges that he has.  I've always had the skills to adapt to change.  I've always been able to make decisions on what I wanted to do.  Not all of my decisions were right and many were made by the young and immature young adult that was me at that time, but I made them on my own and I didn't rely on my parents.  I can see that this is not the way it's going to be with Jacob.
When I look at Jacob, I think about how uncertain his future is right now.  In a way, that's good because he's a blank slate. There have been no serious setbacks yet, nothing has happened to dampen his self-esteem.  But I know that eventually decisions will have to be made and he's going to have to commit to enroll in college or get a job.  I'm thinking he'll enroll in CIP, but he's going to have to be motivated to go.  I'm just hoping something will inspire him enough between now and when he exits high school so he can make a decision about what he wants to do.
There are no sure bets in life.  We do the best we can with we have in the moment.  I think I've made wise decisions about Jacob in regards to his services, therapies, and school placements, so I'm going to keep faith that this will continue.  I'm going to rely on hope that he'll succeed with a job that he enjoys, friends that care, and place to live that he likes.
Time will tell if this comes true.

Monday, February 7, 2011

Life After High School

I have been so busy lately that my blog as been neglected.  I do miss it, but my post this month of Hopeful Parents will explain why.


I so enjoy being a monthly contributor to Hopeful Parents.  The depth of talent of my fellow writers is truly awesome.  Each entry is a unique expression, and the moving stories I read each and every day never cease to impress upon me how fortunate I am to be included with such an amazing group of writers.  Christina Shaver is our founder, and she has done an amazing job creating this wonderful site.  I'm sure everyone the entire Hopeful Parents community feels the same

I'm well aware of the challenges faced by our young adults on the spectrum.  An overwhelming majority do not transition into to happy, successful, and productive members of their communities.  Many are not employed, do not live independently, and do not have a network of close friends and personal relationships.  This is true across the board, no matter what the family's economic status or the quality or the amount of support services that they have received throughout their lives.  

There is a limited amount of research in this area, but the results of these studies are consistent:  many young adults with autism are living unhappy lives isolated from peers lacking meaningful employment that allows them to live independently.  As a parent of a 17 year old with high function autism (a term a really dislike because it tells you nothing about the functioning leave of my son, but I use it for lack of a better word), this fact scares me beyond belief each and every time I think about it.

I  hope that Jacob will find the same opportunity in his life, to secure a job that combines his passions and his abilities as well as serving his community in a way that is meaningful and fulfilling.

Time will tell, but I'm a hopeful parent that he will. 


Friday, January 7, 2011

In My Life

Over the holidays, our household experienced some mild upheaval but it all ended happily ever after.

Right before Christmas, a huge tree in our backyard feel on and took out the lines for our Verizon Fios internet, cable and home telephone lines.  It had been raining heavily over the previous week, and the tree was dead enough and the tree's root system week enough that all it took was a massive amount of rain and down the tree came.  Luckily, no on was hurt and the broken fence will eventually be replaced.  

Verizon sent a rep came out to inspect the damage the following Monday.  The only way to enter our backyard is through a gate that is secured with a padlock, and when the Verizon rep left, he didn't close the lock so the gate was left open.

Just to give you an idea of how cute my doggies are, here is a pic  - Lucy is on the right & Ringo is on the left.


About 6:30 that night, right after I had discovered I'd lost my cell phone, Doug tells me "I can't find the dogs".  We discovered that Ringo and Lucy were let out into the yard and had escaped through the unlocked gate. It was dark and rainy, but we roamed the streets and drove around the neighborhood for over a half hour trying to find them.  We finally gave up as it was clear they weren't in the immediate area.

Both dogs are microchipped and had tags with our contact information, so we knew if they were turned into the animal shelter they'd eventually be returned.  Ringo's tag has our home telephone number, which was unoperational due to the downed tree, and Lucy's tag has the cell number of her previous owner, Doug's son Max.  Lucy came to us because the alpha dog in the house had been attacking her, so she needed a safe place to live.  Luckily, as you'll soon learn, we never updated her tag so she still had Max's number listed on her tag.

After we returned from our search, Doug checked his cell phone and discovered a message from Max.  As it turned out, a very nice young man found both dogs about a mile from our house.  When then he couldn't reach us on our home number, he called the number on Lucy's tag, reached Max, and then Max called us.  We quickly drove over and picked up both dogs, safe and sound just 45 minutes after they escaped, though now they were wet and smelly from the rain.

I realize how lucky we were.  Ringo and Lucy travelled in the rain over two very busy streets.  They could have easily been hit by a car and killed.  The area where they were found is not an especially nice neighborhood.  They could have been found by someone who wasn't an animal lover like us and been hurt by someone cruel.  The outcome turned out to be a happy one, due to the good fortune that our pets were found by a nice young man who took the time to call us and stay with our dogs in the rain until we arrived to pick them up.

I've been thinking about how lucky my family was in this incident, and this has gotten me to reflect on how lucky I've been with Jacob.  We are in a good place at the moment.  He's doing well at Culver City High School.  His grades are good, his teachers are all saying good things about him, and he even has a buddy at school, though Jacob isn't one to fill me in on the details about anything that happens at school.  He just got a job through the school's Workability program as a clerk for a couple hours a week at Petco, and the store's manager reports that he's working hard and putting in a lot of effort.  He's showing more interest in others, and he's engaging in more conversations with both Doug and me, though these are largely limited to his own particular interests.  It's been over 13 years since his diagnosis of autism, and he's come such a long way since the day that I heard the words "Your son has autism".

As any parent of a child with special needs knows, the progress their child makes does not happen in a vacuum.  You count on the help of a lot of professionals, therapists, and friends to assist you and your child.  Just as the nice young man who found Ringo and Lucy who made it possible for their safe journey home, there have been others that have assisted both Jacob and me in our life's journey.

There was Dr. Sandra Kaler who was the first professional to accurately diagnosis Jacob at age 3 1/2.   Not only was Dr. Kaler supportive, she pointed me in the direction of the Westside Regional Center and the Los Angeles Unified School District.  She referred me to a professional speech therapist.  She recommended the one-on-one aide that made it possible for Jacob to stay enrolled in a private preschool and public kindergarten with his neuro-typical peers.  Dr. Kaler's assistance was invaluable, and, without it, I would have been lost.  I know that the road would have been much longer, cumbersome and more difficult in my quest for Jacob's services had I not had Dr. Kaler as my initial guide.

There was the director of the the developmental preschool that Jacob attended for a year.  When I decided that I wanted switch Jacob to private preschool with a developmental kindergarten from the district's in-house preschool, the class was at it's limit for boys and I was told I would have to wait on their final decision until they received more applications.  I called the director almost everyday for nearly two weeks until she finally agreed to let Jacob enroll.  He had a rough start in the class, but the director allowed Jacob to stay if I was in the class as his shadow until I could find someone to take over the role.

That's when I found Cambra Gilbert, the one-on-one aide that was referred to me by Dr. Kaler, and she stayed with Jacob in the classroom for the next two years.  She was so patient with Jacob and good getting him to stay focused, Jacob's ability to maintain in a mainstrem classroom would have been impossible without her.

There were the teachers, administrators, and therapists at Jacob's public elementary school who were always so warm and supportive.  Though most of his teachers had limited firsthand experience with children with autism, they were receptive to any information that I supplied.  There was the school district's occupational therapist who put in a lot of time and effort into marking sure Jacob had what he needed.  And the IEP's that were held, all I can say is I was truly blessed.  There were always at least half-a-dozen representatives from the school district at each meeting, and they were all focused on discussing what they could do to meet Jacob's needs.  The school district always supported me in my request for services, and the district even reimbursed me for the entire amount of Jacob's private speech therapy which at that time amounted just a tad over $10,000.

There was Robin Kurshner at Pathways Speech and Language who worked with Jacob for over two years.  She helped him with his use of language, how to be more flexible and focused, and how to make proper eye contact.  

There was my RDI consultant, Christopher Mulligan at Groupworks West who worked with Jacob and I for about two years.  He was such an asset in helping me to become a competent parent, and I've experienced a tremendous decrease in the daily struggles with Jacob that used to feel so unmanageable.  Jacob still attends a once-a-week social skills class at Groupwoks , and I've seen a big improvement in Jacob's ability to become more socially adept.

There are teachers at Culver City High School where Jacob is currently enrolled who have helped Jacob acheive a smooth transition to a large public high school setting.  He's doing this with a slightly modified curriculum and relatively few supports in place, and, by all accounts, it's been a success.  There is Dan Phillps with the Workability program and his assistant, Alana; she has also been Jacob's job coach at his Petco job and was able to completely fade out after just a few weeks because of Jacob proved he could manage the job on his own.  And his teachers - Ms. Donahue in Algebra, Ms. Kaiser in English, Mr. Roth in World History, Coach Wright in PE, Ms. Scherling in Biology, and until the holiday break, Mr. Dicey in Culinary Arts - they have been so tremendously supportive this year.  There are also the school district administrators that have attended Jacob's IEPs and have helped to implement the goals that have made everything work so well.

And last, but not least, there were my friends that were there for me when I needed to talk it or offered a shoulder to cry on.  There was Susan who always told me how wonderful I was and treated me to a spa day on my 40th birthday.  There were the moms of other special needs children who understood everything that I was going through.  And most important, there is Doug, who has been my best friend and partner for the last eight years.  Even when I have been upset, worrried, or a royal pain-in-the-butt, he has always supported me no matter what.

There are a lot more people who have made a difference in the lives of both Jacob and me, but it would take way too much time and space to mention each and every one.  Some I can vaguely recall, but they are all there none the less.  And because the work is not yet complete, there are still more people that will play key roles in our lives.  I say to the people that I've already met, thank you for the time we've shared.  And to the people I've yet to meet, I look forward to the time will will one day spend together.

I feel very lucky that both Ringo and Lucy had a safe journey home.  I also feel very lucky that my journey with Jacob has included so many kind and caring individuals..  When Jacob was diagnosed, I had no idea of what the future would reveal.  And now 13 years later, I realize that the people that we met were the most important aspect of the journey itself.
I think the Beatles said it best.

In My Life
Though I know I'll never loose my affection
For people and things that went before
I know I'll often stop and think about them
In my life, I love you more