Ten Habits of Highly Successful Families

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 for any parent, but it's our job whether we like it or not.  So, when I was in the office of Christopher Mulligan of Groupworks West and found this list, it really struck a chord.  And I think most of this advice can be applied to all families, not just those with children with special needs. 

So, here it is, The Ten Habits of Highly Effective Families:

1)  Slow down the pace of your life:  Autism treatment is not a race, doesn't have a finish line, and should not be approached with a "do or die" attitude.  The journey with your child is a marathon, not a sprint.  As the saying goes, stop and smell the roses.  Help  your child do the same.  

2)  Less or more:  Don't load up with activities every afternoon - therapeutic and/or recreational.  Leave time for hanging out, baking, playing in the backyard, or digging a hole and getting dirty.  

3)  Talk less:  Yep, just don't talk so much.  It's really OK to allow periods of silence, periods of listening to music or the birds, or the wind.  Talking less will improve the quality of your communication.

4)  Prompt less:  Try to remember that if prompting was a successful strategy then you wouldn't need to continue to prompt all of the time.  Prompting leads to more prompting and shuts down your child/teens problem solving/thinking.

5)  Get out of the house:  Develop routines that take you out of the house for recreation, errands, exercise,   and family visits.

6)  Set your priorities:  Consider what is important to the quality of your life and make time to improve the quality of your life.

7)  Be proactive:  Problem solve in a proactive manner.  Don't wait for a crisis and then react to the crisis.  Think prevention at all times.

8)  Say what you mean and mean what you say:  Don't waste time giving directions you can't or won't enforce.  Be selective in what you say and then enforce limits quickly and with authority.

9)  Build community:  Find ways to surround yourself with community - religious, cultural, recreational, or political.  Finding a group of people that understand what you are going through is essential to not feeling alone.  Reach out to other parents when you're feeling stressed and overwhelmed. Be available for other parents when they feel the same.

10)  Have fun:  Enjoy your life!  Autism does not have to define your life.  The best therapy more often than not is no therapy at all - get out of the house and have a good time!  Having positive experiences with your child is essential to your child's growth and your family's overall well-being.

(Wording in italics added by me)

The Art of Small Talk

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 transition to independence.  I know for me, work was always more than just a paycheck.  It was also the place where I developed meaningful friendships.  When I started a job, I wasn’t usually acquainted anyone, but I learned how to start and engage in conversations which became the catalyst for the development of deeper friendships. Had I not been able to do this, I never would have developed the network of friends that I eventually made.

And how did these friendships start?  With small talk.  When meeting someone for the first time, we don't usually start off discussing anything like politics or whether or not we support the death penalty. The first conversation usually starts with a “How are you today?”, or "I like that jacket.  Where did you get it?” We don't usually go into detail about our special interests either, which many people with autism do because it's easier for them to control a conversation about something they are well-versed as opposed to having to respond in the moment to what the other person communicates.  Talking about something trivial is a way to get the ball rolling so we can gauge if we share anything in common or have a common bond. It sets the stage to get to know the other person better and if all goes well, a deeper, more meaningful friendship has the possibility to develop.

So what happens when you have difficulty talking about nothing important? What occurs when you are unable to “think on the fly” and need to react to the person in the moment based on new information or non-verbal cues? How can you possibly expect to make the friendship connection when you don’t even know how to start the first conversation?  When you can't do this, you can’t develop friends or allies in the workplace, and this puts you’re at a big disadvantage in keeping your job.

This is a big reason why individuals with autism have such a high unemployment rate. Even when a person is able to get the job, the ability to keep it depends a lot on the social networks that are made in the workplace. If you don’t make a connection with your supervisor, promotions are pretty much non-existent and any type of mentoring opportunity is lost. If you’re co-workers don’t have your back, they won’t cover for you when you need it or worse, they’ll try to get you fired.  Something as simple as not saying hi to someone when you first thing in the morning can be upsetting or can make your co-worker think you're rude.  And once this happens, a bad reputation can easily spread and others won't like you either.

So for Jacob’s very last IEP, the most important goal we developed was the ability to make small talk. Jacob is very lucky that he has a good team IEP. The plan we all made with Jacob was that his teachers would engage in simple conversations so he could practice making small talk. The speech therapist was going to be consulting with his teachers to see how it was going, and Jacob was going to start with cue cards to help him come up with topics to kick off the conversation. 

We'll see how it goes.  I've seen a lot of progress with Jacob, and it's easy to feel complacent to see how far he has come.  But I know the statistics for young adults just like Jacob are really bleak, and the future won't be so bright unless he's able to keep job and develop friendships in the workplace.  So I'll keep my fingers crossed and hope for the best.

Everything is Going to be Alright

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.

I know that I was extremely lucky to live in the community that I did when Jacob was growing up.   The office of the doctor that first diagnosed him was located just a few blocks from my house.  Our public elementary school had excellent services including an amazing occupational therapist who was employed by LAUSD.  Jacob and I were part of several playgroups that became great social opportunities for both of us.  There were beautiful parks and the beach was just a mile west down the hill from where we lived. I was also lucky because I co-owned a successful business with his father that I managed part-time from home.  And because this, I had the time and money to focus on Jacob and what he needed.  I was available to drive him to doctor and therapy appointments.  I had time to coordinate information between his school and all of the professionals that were hired by me to support him.  I could spend time developing his imaginative play by sitting on the floor and creating fun scenarios with his plastic toy animals and Thomas the Tank Engine trains.

It's sad to see that California is proposing such large budget cuts to social services because the Westside Regional Center was and continues to be a tremendous support for Jacob and me.  We had the same case worker for almost ten years who was wonderful, and every case worker since has been a a great advocate for him..  WRC has funded so many wonderful experiences including summer camps, swimming lessons, social skills classes, even covering the fees for my RDI Consultant.  I relied heavily on WRC, so when I hear about all of the funding cuts that are being proposed to the Department of Developmental Services, I wonder how much longer can the entire Regional Center system survive.

All of the wonderful supports for Jacob have paid off, and when you observe him today, he is doing great.  He's a confident young man.  He's getting good grades in school.  He just completed his second Workability-sponsored retail job.  He's even starting to venture out into the community with his peers, and this only started yesterday.  It was the last day of 11th grade and he went out to lunch to Dennys with his friends from school.  This was a huge step for him, and a huge surge of happiness for me.

But there is still a ways to go.  Does he engage with my husband or me in conversations on topics outside his own interests?  Rarely.  Does he have an idea if he wants to go to college or what his career path might be?  No idea at this point.  I've told him that he can pursue anything after he graduates, and it doesn't matter if it's work or school.  The only option not available is doing nothing all day.  He says he understands, but, right now, he can't make a decision about what he'll be doing that far in the future.  That's cool.  He doesn't graduate for another year so I'll let him enjoy his carefree high school days while they last.

Now that Jacob is 18, he's legally an adult.  He has the right to choose what he wants to do with his life even if I don't agree with what those choices might be.  As long as he's living a moral, ethical, and law-abiding life, I have to back off and accept whatever Jacob decides.  I have to remember that he is now a young man, and he deserves to be treated and respected as an adult.

So, do I really feel that everything is going to be alright?  Yeah, I do.  But does that mean I still worry that maybe everything is not going to be alright?  Yeah, I do that too.  I think as a parent, I'll always wonder if Jacob is happy, doing well in his job and pursuing his dreams, and I'll do this regardless of his challenges.  I think about these things because I'm Jacob's Mom.  And because I'm his Mom, I just want to know that everything is going to be alright.

I'll be Back!

Life certainly gets in the way at times, and, for me, it's doubly true for this blog.  A challenging and demanding job for the last year and a half, a new marriage and puchasing and moving to a new home have been positive changes in my life but greatly diminish any time to devote here.

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

Perspective

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. With my job as Program Director of the College Internship Program (a role I grow to love more and more each day), getting married, and buying a house, I've been too busy to attend to some of my regular day-to-day activities.  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 organize the merchandise in the DVD department as this is pretty much his dream job.  When Jacob has disposable income, Best Buy is one of his favorite places to shop, and he's bought a lot of his movies from the store in our neighborhood.  I'm just going to have to help him learnn to budget his money so every cent he earns is not spent before he cashes his check.

I can't remember the last stressful moment I've had with Jacob.  The days of his disruptive behavior in class ended long ago.  He is now completely independent in completing his homework, so the days of coordinating with his teachers in turning in his assignments are a distant memory.  He want to attend college after he graduates from high school next year, so he's actually planning for his future.  He even takes care of all his personal hygiene without my prompting or nagging.  Pretty much of what I had hoped Jacob would be doing at this stage of his life are actually happening.  Way to go Jacob!

Did I really think this is where Jacob was going to be at 18?  To be honest, I had no idea.  Though he was an adorable little guy, his behaviors were at times challenging.  He was never a child that could attend birthday parties on his own.  Play dates needed to be moderated and facilitated by me.  At one time, he had lots services to coordinate, so I spent hours driving Jacob to and from therapy and doctor appointments.  Now that it's nearly 15 years from the day of his diagnosis, I guess it all paid off because Jacob is now a fairly happy and confident young man.  Not that there isn't more room for growth, but at least now I'm optimistic about the future.  When Jacob was young, there were days when I feared the unknown.  At least for now, Jacob seems to be on the right path and the future isn't a big, scary question mark.

So yes, I'm truly a hopeful parent these days, I wish the same for every parent with a child with an autism spectrum disorder.  And now that I'm the Director of the College Internship Program in Long Beach, I can also help other parents reach this point with their young adult children.  Besides Jacob, this is something that I truly appreciate.

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 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.  Doug 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.