Thursday, June 4, 2015

Letter to a Parent of a Child Newly Diagnosed

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 you would have expected or sometimes want.

One of the toughest things that you'll experience is how your child is treated and perceived by others. You are your child's best advocate, so become educated and knowledgeable about the best schools, therapists, and resources in your community. One of the best places to find this informatoin is from other parents, especially the ones of older children who have been in your exact same situation. Seek them out and ask for their advice.

Most important, the journey with your child is a marathon not a sprint. Make time to have fun, laugh, and experience joy on daily basis - the last one can be the most challening sometimes! Share positive experiences with your entire family. Take care of yourself both physically and emotionally, find a good parent support group, and stay connected to the things that you love and have a passion. Your child will benefit if you practice self care on a daily basis. Meditate, talk a walk, or read a book - do something you enjoy each day, even if it's only 10 minutes before bed. Be kind to yourself at all times and don't judge yourself for something you did or didn't do.

Best of luck in the next chapter of your life. It won't be what you expected, but you will becoame a better and more patient person from the experience.

Sunday, December 15, 2013

Cure for Autism - No Way!

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 inflammatory, insulting, or based on false information. For my own opinions, I try to come to an educated decision on any issue, be it autism or anything else, so I can make the most logical conclusion based on facts.  I stick to my principals and try not get swayed by misinformed opinions.

But the idea of curing autism is one with which I disagree.  Autism is a difference in the neurological wiring of the brain and manifests in a variety of ways that is unique to that individual.  The autism spectrum is very wide, ranging from those that are highly impacted with some individuals that are non-verbal and having severe challenges with communication to those that are labeled high functioning (not my preferred term) or having Asperger's Syndrome with having average to superior intelligence.   Because their are millions of connections within the brain, autism presents in very different ways unique to that individual.

What creates even more confusion is that many individuals with autism have comorbid (or co-concurring) conditions.  The person have may have dietary sensitivities and a casein free-gluten free diet is appropriate.  He may have ADHD and medication may help, but my opinion is to improve thier diet and increase physical activity that is best suited to the individual prior to considering mediation  Every person I've ever met has been extra sensitive to something in their environment involving one or more of their five senses.  They may also have challenges with balance or knowing where their body is in space.  But ADHD, dietary issues, and sensory dysfunction are all separate conditions aside from the autism diagnosis.  Each one needs to be diagnosed and addressed separately by a qualified professional that specializes in that area of expertise  Once the comorbid conditions are diagnosed and remedied,  we can develop effective support program that helps remidate the challenges that are affecting the individual.

Autism is a complex neurological condition.  It is not a disease or sickness like cancer or leukemia.  We can't cure it, but we can support individuals with autism so their challenges can be addressed so they can transition into happy, healthy adults who make healthy life choices and get what they want out of life.  Words are powerful. Using negative words that label autism does not help those impacted by it. Creating accepting communities where people with autism are embraced as the unique individual that they are is one of the best supports we can provide.  If we don't, we will never overcome the stereotype that there is something horribly wrong a person just because they have a difference in the wiring of their brain.

Up until the 1970s, there was a horrible history of how we treated people with autism.  Its now 2014, and it's time to create a new consciousness in our autism viewpoint.  We need to create a world for my son and millions of people like him where they are treated with  respect and dignity and not viewed as any less of a human being just because they are different.

I never did come to an amicable resolution with the newsletter editor about curing autism.  I know it's an opinion that differs from my own, but it's one subject that I can't stand back and stay quiet.  My son has autism and he does not need to be fixed, His autism does not need to be eliminated. It's part of who he is and always will be.  There is nothing wrong with him, so I will never support the opinion that he needs to be cured.

I know that autism awareness has come a long way since his diagnosis in 1997.  In some ways, I think there has been a lott of advancement in the understanding and acceptance of individuals with autism, but in many ways, there is are still many misconceptions and misunderstandings.  Hopefully, that will change one day, but I'm guessing not for a very long while.

Thursday, October 24, 2013

Thinking About the Past and Hoping for the Future

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 professional services that Jacob received has been a big factor in how well he is transitioning to adulthood, I know that equally as important was the time that Jacob and I spent together developing a successful relationship while he was growing up.  Trips to the park, visits to the aquarium, and overnight stays in Big Bear, all of these developed positive memories that brought us closer together.   Looking back, I don’t dwell on his challenges, but I do recall with great fondness the fun we used to have and how happy he became during our shared experiences.  How excited he became when he saw a cow in a pasture out of our train window during our three-week vacation to Switzerland.  How much he loved having the musician Robbo perform at his fifth birthday party.  Active day-long visits to pretty much all of the major zoos and amusement parks throughout Southern California .  Thinking about these memories brings a smile to my face when I recall these joyous times we used to share.

For the most part, I wouldn’t change anything from the past except for one:  implementing the Relationship Development Intervention program when Jacob was first diagnosed.  We started working with an RDI consultant when Jacob was 15, and I’ve found it to be extremely important and instrumental for me in developing a healthy relationship with Jacob as a young adult.  Through the RDI program, I was educated about the core deficits of autism and how the development of dynamic thinking skills would be the key to his success as a young adult.  It helped me examine my method of interaction and communication with Jacob and alter it in a way that helped him accept what I was saying instead of rejecting my information outright.   Now, Jacob and I have a respectful relationship, and he’s growing into a kind and considerate young man who really tries to show that he cares about me.

I’ve also learned not to compare myself to Jacob when I was his age.  He has autism.  I don’t.  What came naturally for me at his age is a challenge for him.   At 18, I had formed a separate identity away from my family.  I sought out new experiences.  I had friends and I wanted to spend time with them.  Jacob couldn’t be more different.  For my 18th birthday, I went on a five-day camping trip with friends.  For Jacob’s 18th birthday, if I hadn’t made plans to order a pizza, watch “The Big Lubowski” together then go bowling, he would have spent it watching TV in his room.  Letting go of expectations of Jacob is something I gave up on long ago.  If he’s engaged in productive endeavors like holding job or attending school, I’ll be happy and I won’t nag him for what he’s not doing.

I truly understand and appreciate what it’s like to be the parent in charge.  I used to equate myself to the quarterback of Jacob’s life, and it was actually empowering to have the ability to make decisions for Jacob that had a positive impact on his development.  But Jacob is now an adult, and it’s  time for him to find his own way and make his own decisions about his life away from me.  I’m not the quarterback of Jacob’s life any longer, I’m the observer watching on the sidelines.  And I have to admit that sometimes, even I have a tough time with coming to terms with this.

For parents, assisting your child in their transition to adulthood can be a scary, overwhelming and completely confusing process.   To make matters more complicated, a young adult child must learn to become independent from Mom and Day.  He needs to learn to rely on himself to make his own life decisions and choices, which is almost impossible if he’s still relying on his parents to tell him what to do.

Jacob turned 18 last year, and it’s seems that the investment of time, money, and effort have paid off.  He likes high school.  His teacher’s say he’s a pleasure to have in class.  He doesn’t need me to be his social secretary any more.  When he was young, I wasn’t quite sure he’d ever be able to independently accomplish even one of these goals, so it’s very satisfying to personally witness Jacob’s growth and progress.
But even with Jacob’s success and my knowledge about the supports he needs, there is still a ways to go.  He still perseverates on his special interests.  He rarely has conversations with my husband or me on topics outside of these interests.  He prefers to hang out with his friends at our home instead of venturing out into his community seeking out new experiences.  Yes, even though it’s smooth sailing these days, I won’t know how well Jacob will ultimately do until he graduates from high school and begins to find his way in the world.  And based on the statistics of young adults on the autism spectrum, finding and keeping a job is going to be a huge challenge for Jacob.  Only time will tell if he will buck the trend in this area.

As a parent of a young adult who is doing well, I can honestly say it just takes a leap of faith and unending determination by the parent for their child to reach the goal of a successful transition to adulthood.  The eye on the prize is an independent young adult who is in charge of all areas of his life, who has a social circle of friends who truly value him for the unique individual that he is, who can advocate for himself and not be taken advantage of, and who is a productive citizen within his community.  In other words, he can live where he wants, work in the job he desires, and has people in his live that love and value him for who he is.  I know this is doable.  It just takes a little longer than either you or your child would like.  Patience is a virtue, and for every parent of a child on the autism spectrum, it’s not just a nicety it’s an absolute necessity.

Saturday, September 7, 2013

Why Isn't Anyone Doing This?

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 me just how unprepared Jacob is to take control of his life.  I know he'll get there eventually, but it is requiring a lot of parental support.  I'm lucky that I've worked in the autism education field for a while, so I'm well-informed on what is and isn't available to Jacob. 

There are a lot of organizations starting to pop up that are filling in the gap to support adults with autism.  There are residential support programs.  There are professional job and life coaches that specialize in working adults with autism.  There are "day programs" where adults that go to practice life skills like shopping and taking public transportation.  It seems there are all sorts of programs out there, but none of them are what I want for Jacob.

What I would really like is a program that supports Jacob while he is still living at home.  I want a program that supports him in an internship so he can learn how to understand the expectations of his supervisor that would also help him make social connections to his co-workers.  I would like this program to support him in community-based activities centered on fitness and his special interests, then help him share these with his co-workers at his internship so he can learn how to build meaningful friendships.  I want this program to help him attend college and support him in taking classes so he can make social connections at school and get academic support for his school work.  I want this program to help him organize and personalize his room so he learns how to make his living environment calm and clean.  I also want him to learn how to entertain guests at home and learn how to organize small dinner parties or movie nights with his friends at our house.

But where does such a program exist?  I can't find a anything like it, not in Los Angeles or anywhere in Southern California.  There are residential programs that do some of this, but Jacob is not ready to move away from home, not just yet.  He needs to learn how to keep a job and make positive social connections at work and make lasting friendships as a foundational skill while he is still living at home.  Since he wants to go to college, he'll need help navigating the enrollment process, interacting with his counselor, and finding his way around the campus as well as make social connections with his classmates.  Once he's mastered all of this, I know he'll be ready to transition to his own apartment and keep a job so he'll have the income to support himself.  He still needs help with all of this, so I'm glad he's still at home so I can give him the support that I know he needs.

I think helping Jacob find an internship was a great first step.  The next thing is to get him doing some type of physical activity and find things that he'd like to do on a regular basis so he can share these with the co-workers at his internship so these work relationships can turn into true friendships.   Referrals are the primary way to find future work, so the more positive friendships he makes and the larger his social circle becomes, the more opportunities he'll have at being referred by a someone that knows and likes him for future employment.  A meaningful job with a decent living wage is what I wish for Jacob.  I'm sure he'll reach this goal with the right support.

I used to run a residential program that promoted itself as "a comprehensive post-secondary transition program for young adults with Autism Spectrum and Learning Differences that offered individualized academic, social, career, and life skills support".   I learned a lot from this experience, especially that doing everything at once for a young person that is moving away from home, sometimes for the first time in their young adult lives, can be extremely overwhelming and this approach isn't necessarily the best way to support that young adult.  I felt that the goal of the program that I was running was to help students experience success so they could feel good about themselves and they would be motivated to take on more and more responsibility in being in charge of their lives.  All of these young people had challenges in making social connections,  managing their time and money and had little experience doing chores at home like doing laundry or going grocery shopping.  Imagine if you were a young person just like this, having to do all of these things for the first time while attending college and possibly having an internship, you were a bit immature and naive then add having to live with a roommate who was someone you didn't necessary like or have anything in common.  After about a year and a half of running the program, I learned that it was difficult fostering feelings of success and independence in the young adults that were enrolled in my program in the way that this company structured their services.   I also felt that I was letting down the parents of these young people as they were putting their trust in me to deliver on the assurances that the company was making but were next to impossible for me to keep.  Just like several of my students, I crashed and burned and left the company just short of my two year anniversary.

For parents that are in the same situation as I am, thoroughly investigate and ask a lot of questions of the executive directors and senior managers of any program that you are planning to entrust your child.  It's especially important that their alumni's have a solid track record of employment after leaving the program because without this, your child will not only not have the means to support themselves, but also will lack in a social network that will help them find future employment or get promoted to better employment opportunities.  I don't know any programs that offer internship placement with social mentoring in community based activities that bridge these experiences to connections with co-workers, so ask the director of any program you are considering how they do this and get solid examples of when it was successfully implemented.  Ask to speak to parents that have students in the program and also to parents whose children have left that program and are currently employed in a full-time job where they are happy and making social connections. 

Since I can't find a program like the one I'm describing, I'm working making one happen for Jacob, then I'll make it available to other parents so they can access it for adult child.

More about this to come in a future post as it develops.

Wednesday, July 17, 2013

Department of Rehab 101

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 meeting which I think give a great overview of the types of services available to any adult that is eligible for services from the DOR.

Goal of the Department of Rehab: To assist individuals who need help obtaining and maintaining employment.  DOR has an assessment process that takes 2-3 weeks.  The assessment(s) take into account your jobs skills and your condition (disability).

Intake Process:  The intake meeting takes place with a counselor.  There is an application, health history questionnaire, and work history questionnaire.  The applicant needs either a CA ID or CA Driver’s License.  You will need a copy of your IEP so that you can verify your disability.  This intake meeting takes about an hour. DOR has a timeline of 60 days to determine eligibility.  A calculated score determines eligibility.  If your score is high/low enough, you qualify for services.   

Question to ask for parents: Should this paperwork be obtained and completed prior to intake or will a counselor assist as part of intake meeting?

If you qualify for services, the next step is to meet with your counselor to develop your IPE (Individualized Plan for Employment).  You will have objectives in your IPE this is similar to the IEP (Individualized Education Plan) you had in high school.  If you do not have a clear goal, they may give you the opportunity to take a vocational evaluation to help determine your goals and IPE.

There are two options within the Individualized Plan for Employment (IPE):

     1.  Direct job placement - you want to get a job and start working.
  1. Job Training – You want a job that requires training from places such as community college, occupational centers, trade/tech schools such as LA Trade Tech, West LA College, Santa Monica College, LA City College, Southern California, Regional Occupational Program (SCROC).
In some cases DOR may help pay for books, supplies, uniforms, assisstive technology, licensing fees, transportation.  These services are based on individual need.

More about the IPE: You can change your plan.  Sometimes you have to change your goal.  For example if you are in a job-training program, DOR requires that you register with Disabled Programs & Services (DSPS).  DOR requires you to share your progress (grades) in your classes as part of your IPE.  This creates a nice support system between you the student, DOR, and DSPS.  If you are not performing (failing classes, absent, tardy) you will need to amend your plan.

Reminders/Final Thoughts
If/when you register with DSPS (Disabled Programs & Services) you get priority registration.  Even if you only get 1 day of priority, you will get to register ahead of a lot of other students.

The labor market is tough!  It’s been picking up lately, but there have been many cutbacks due to overseas competition and the advancement of technology.  Many jobs require an advanced degree.  Careers in culinary arts, cosmetology, and computers are good fields that are growing, and they don’t all require a Master’s degree.

The application process is to DOR is pretty involved (there are about 19-20 pages worth of forms).  Keep your appointments with DOR! They encourage you to begin the application process toward the end of 12th grade.  The reason for this is that your are still in high school and are therefore busy during the day.  

Parents: You’re next step (shall you decide to take it) is to call DOR and schedule an intake appointment.  If you have questions, you can contact your DOR caseworker or ask to speak with an available staff counselor.  You might want to call DOR and ask what is the earliest your son/daughter can sign up for an intake meeting.  It is best to wait until the end of 12th grade, but if you can get a head start on the process.especially if you want to get into a community college or training program. 

Tuesday, March 19, 2013

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)

Tuesday, December 11, 2012

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.