The Truth About Autism, Vocational Skills and the Road to Independence

The truth about autism, vocational skills and the road to independence, is school isn't enough. People, including teachers will underestimate your child, which means your child may not be given a chance to reach their potential if you can't prove what they are capable of. Our kids could be in school all day and never learn what they need to individually achieve their greatest level of independence.  Its all about show and tell, the skills have to start at home, and they have to start early. We have to show and tell everyone what he/she can do and then prove it. 

We began with vacuuming when he was 10. 

People tell me all the time "I wish my kids would do as much as Nick".  He's quite impressive for a teen boy - any teen for that matter - when it comes to chores. I am so proud of how helpful Nick is now, but when we introduced chores when he was 10, I wasn't thinking about how great it would be to have help around the house.  My only thought was working and doing is his only road to independence and tiny steps toward teaching vocational skills.  It's been slow and we have been relentless fashion, but it will have been worth it if it increases his independence much less and God willing results in a job! But, enough with talking about it these pictures tell the story :). 

Then we added after you eat, clear the table, and then feed the dogs. Then clean up after the dogs....Then taking out the trash and empty the recycle bin and the pattern continued from when he was ten until today.  Here's what it looks like now..

• Feed the dogs 

• Give the dogs water

• Clean up after the dogs in the yard

• Put clean silverware away

• Take the trashcans out on trash pick up day

• Organize cloths for the week

• Empty Dishwasher

• Gather his dirty laundry

• Sort mom's filing alphabetically (new I'm tapping into this love for letters)

• Shed papers
• Take out trash and recycle

Then we read "Little Red Hen"
& motivated his to learn how to cook 
the treats he wanted to eat! 

Then  taking him to the Grocery Store and 
having him get me what I needed. 

And Cleaning up after the dogs 

 Now he's working in the School Garden 

 AND HE'S WORKING IN THE SCHOOL CAFETERIA!!

AND YES, WE ARE ALL EXHAUSTED!!!  BUT IT'S BEEN WORTH IT BECAUSE...

NOW NICK HAS A ROUTINE HE EXECUTES EVERYDAY!!! 

Nick's First Trip to Overnight Camp!! Pictures & Tears....

This is one happy Kid!!!

Nick's first time at overnight camp! Actually it was the first time in 17 years he had been away from home overnight without us, except to be in the hospital. The reason's why, we all know :(.  When he was gone NO ONE CALLED me it was crazy, he really was without me!!! That brought up an odd combo of  "No news is good news", Joy,  and discomfort because I was disconnected. DISCONNECTED for the first time ever. He was okay with out me. And boy was it worth it! Now I'm crying as I look at my happy  guy, who did this! Thanks to Annabeth, Luis and my church family for making this happen. We love you!

 THE END!

Teens With Autism Exit High School As Social/Functional Illiterates

Nick Working in HS Cafeteria

"The first battle was getting the school to buy into the reality that no matter how much time Nick spent in a Special Day Class, no matter well he was doing and no matter what he learned, if he could not translate that knowledge directly into a vocation or show how it improved his independence, it was USELESS"   

I don't know about any of you, but Nick was on track to age out of school no closer to being able to live independently than he was when he began!  I'm not saying he didn't learn anything, Nick is a smart kid; he can read, he can write, he can speak better, he can add and these are all essential tools and yes, much he learned in school.  At the same time, he can't access his community to use these skills, when he can't walk across the street on his own, work with money, use public transportation and he doesn't know what a stranger is, has no sense of danger, and can't monitor time for himself for any other purpose than to keep track of what he is going to get and when.  So, in reality as far as being independent Nick is my version  of a social/functional illiterate. It's sad but true, because for all the great things he has learned if he isn't able to or taught to apply them to a job, or success in the community, what has he really accomplished?.  This isn't just Nick I'm hearing this from parents everyday, so it's not just a Nick issue.   Despite my tremendous disappointment the truth is the system is what it is, IMPERFECT and overwhelmed, and unprepared to individually educate our children.  So we are in a place where we get out of it what we put into it.  When Nick was first diagnosed people told me Autism was a survival of the fittest disease, and that is still true today, so I blame no one.  I take that back, if blame were to be passed out, I would pass it me, Nick's mom because I know better.  

When I started this journey I thought the challenge was early intervention, because no one knew about autism.  I was wrong, now everyone has heard about it and it's still every man for themselves, one kid, one program, one outcome at a time all measured by how much we each can put into the process.  Sad but true, the buck always come back to parents and caregivers. 

Here's what we are doing to improve Nick's outcome after HS. 
I'm sure many of you can give me more input on how you're making progress.

We have been working on vocational skills in various forms for Nick since he was 10, in hopes of improving his level of independence.  Like I said, I thought the system would move with us and support Nick, especially once he entered high school and I was wrong.  Sadly, when our kids get to high school we are tired, and most of us get little exposure to the classroom, we get daily reports that all is well, and relieved to get a break from fighting,  we embrace good news and trust that the system is giving our young adults what they need.  I've learned that is not the case for us.  So many years into this journey I've learned Nick memorized more than he actually learned in class, then over time he would forget what he memorized because the information did not have any real meaning for him.  Nick did not retain a great deal of the useful information exposed to in the classroom because he did not have the opportunity to  "generalize" the information or skills in the real world, so it's more "Drill and Kill" than real learning for Nick.  This wasn't a big worry when he was in elementary school, but it's critical now and there are few options for him to generalize what he has learned in work place settings, given he's not 18 yet.  And when he turns 18 the pickings are still slim in our area.  In LAUSD the ASD classes do not even offer - what is available to other developmentally disabled special education classrooms - Community Based Programs (CBI)!  Sounds crazy, but true.  That said,  there was no way I wanted to see my son age out of school, having sat in a classroom for years, filled with information yet exiting no closer to being able to live independently than when he began!  I promise this would have been the case if I left him in the hands of the well intended, who measured his success based upon his ability to perform the work in the classroom.  

Nick loves Books....him just hanging our reading.

I'm happy to report that we've made progress and I wanted to share the process.   The first battle was getting the school to buy into the reality that no matter how long Nick spent in the SDC, no matter what he learned in the classroom setting, if he could not translate it directly into a vocation or show how it improved his independence, it was USELESS. A big ouch for educators who are well intended.  For example,  if Nick can do math in the workbooks in class, but he can't translate basic addition and subtraction to money, he can't independently  buy things from a bus pass, to groceries or clothing and he can't order and pay in a restaurant, so have to cross out one of the most basic skills required for independence.  
The second battle, was mediation because even once the school bought into the idea, they had no programs and the district rules said they could not create one. Nick was required under the rules of "Common Core" to remain in the classroom, take all the coursework so he could test and pass the standards.  What's funny about this in Nick's case is HE IS NOT ON THE DIPLOMA TRACK AND WON'T BE GETTING A DIPLOMA - BUT THEY STILL SAID HE HAD TO CONTINUE WITH THE COURSEWORK!!!  Fortunately  Federal law provided support, because the point of an IEP is to create the best educational program for each child. That said, the district finally agreed, and the school was given permission to create a real Individualized Education Program for Nick!   

Third, now that he could come out of the classroom, where to put him?  I had been building a relationship with school leadership for years, and had a team open to do the work needed to build a unique program inclusive of gen ed teachers willing to accept and support  Nick.  I know you're all really surprised to learn that all general education teachers are not open to having our kids in their classroom! LOL.   Then we had to build a program where he could spend  his day learning to use  what he's learned in class for the past 14 years in various settings, with a focus on vocational skills.  Here's his schedule now:

Nick Dressed Up To Sing in School
Choir Holiday Program! 

• Homeroom (SDC)

• PE (APE)

• Language Arts (SDC)

• General Ed Ceramics (where he does ceramics which he loves and helps the teacher with jobs)

• Teachers Aid (TA) - For PE Coach 

• General Ed Choir - Where he sings which is building new brain connections and he works on his social skills and functioning in a group.

• Cafeteria Worker - Does various jobs as asked by supervisor 

• Afterschool -  Farm Program 

The Forth Challenge is keeping it going and pushing vocation and independence at home. Our program started with one thing at a time and now when he comes home where he has chores, broken down into Daily (AM, Afterschool, Night time), Weekly and sometimes. 

• Feed the dogs

• Give the dogs water

• Clean up after the dogs in the yard

• Put clean silverware away

• Take the trashcans out on trash pick up day

• Organize cloths for the week

• Empty Dishwasher

• Gather his dirty laundry

• Sort mom's filing alphabetically (new I'm tapping into this love for letters)

• Shed papers 
• Take out trash and recycle

He is learning how to follow instructions to cook. We use mix's so he can read the box (i.e. cookies, mac and cheese). We are starting with his favorites! Even a simple direction followed precisely with measuring is a big deal for us!  This is a place where he gets immediate reinforcement for using math! 


So that's what I have share your ideas.
.

In Preparation of Nick's Transition IEP - Facts Make all the Difference

Nick's Transition IEP is coming up and my goal is to get his entire team committed to making sure he leaves school with skills that will increase his independence. He's been in school for a long time now, and my emphasis is NOT on teaching him more in the classroom, rather I am focused on helping him generalize the skills that he has learned, in the real world. 

Nick going to sing in the choir
Holiday program! 

At first the school would not build a custom IEP for him that meant him being out of the classroom, which we corrected in mediation. As a result he is only in his special day classroom for 1.5 periods. The remainder of the day is spent working in the the cafeteria, participating in Choir, being a teachers assistant for a PE coach, working on the school farm and participating in ceramics where he also assists the teacher. This plan insures that Nick has to interact with various people in various settings and is given the opportunity to apply what he has learned in the classroom to get a job, and feel good about himself. 

That said I thought it was important to give everyone involved in the process a full perspective, because if I've learned anything, I've learned that I can take nothing for granted. You might want to share this too. It's an easy overview and it makes the case for every kiddo who wants to be more independent. 

Autism Spectrum Disorder (ASD) is the fastest growing developmental disability in the

United States. Beginning in the late 1980’s, autism diagnoses began to skyrocket,

now affecting 1 in 68 children in the United States: a 1350% increase since 1993,

according to the Centers for Disease Control and Prevention. This makes ASD more

common than childhood cancer, juvenile diabetes and pediatric AIDS combined. An

estimated 1.5 million people in the U.S. and tens of millions worldwide are affected by

ASD. These children are now becoming young adults. About 50,000 young adults on the

autism spectrum turn 18 every year.


A Life Long Developmental Challenge

Addressing the epidemic of aging young adults with autism is a significant challenge for

families, our state, and our country. Autism is a life long developmental challenge. In the

coming decade as many as a half million children with autism will reach adulthood. Yet

very few residential and vocational development programs exist for them. The options

that do exist often have waiting lists of 8 to 10 years. Frequently, adults with autism are

placed in facilities or programs that are neither designed nor equipped to handle their

specific needs.

It's estimated that there will be a 300% increase in the number of young adults needing

residential services by 2020 with continued increases each year thereafter. These young

adults are aging out of the education system beginning this year.

No Pathway to Work

The growing demand for employment programs to support those with ASD has reached

a crisis level. Young adults with ASD in the U.S. workforce are scarce: 90% of people

with ASD are either unemployed or under-employed. Nearly seven years after graduating

from high school, 1 in 3 young adults with autism lack a college education, technical

training, or paid job experience. Only slightly more than half of young adults with autism

have ever worked for pay since leaving high school, according to a survey published in the

Journal of the American Academy of Child & Adolescent Psychiatry. Roughly 85% of

those with a moderate disability have worked and just 12% of the most severely disabled

have work experience. By comparison, young people with emotional disturbances,

learning disabilities, or impaired speech and language were roughly five times more likely

to have held a job. People with intellectual disabilities are twice as likely than those with

ASD to have been employed since high school.

Why Do We Send Teens With Autism To School?

Before you read this I am going to ask a favor, stay calm. You might even want to put your hand under your chin to catch it when it drops, in the event these comments shock you. 

I just heard this "Your son is never going to be independent, so why are you so concerned about him working? He's never going to be able to hold down a job. I mean he can't get seem to get by without one to one support. Are you sure it isn't a waste of time and you're not just pushing to have him learn things he will never really use, and maybe doesn't even care about?. I mean I understand your wanting the best for him, and that's great, but how do you know you're just not wasting both of your time chasing a life he will never live?" 

I was frozen for what seemed like forever, and I fought to push away the tremendous greif I felt hearing her words. I didn't feel angry because I really did hear this persons compassion, albeit misguided and uninformed. 

Finally I said, because he deserves as much opportunity to live his best life as anyone else!!. Then I just starting rambling and it went something like this. From the day our kids are born we start thinking about school. Why do we send our kids to school? To learn, and why do we want them to learn? So they can get a job. And, why do we want them to get a job or have a career? We want them to be able to survive, care for themselves, make friends, take pride in accomplishment and have purpose, both of which society tells us will bring happiness. We want the best for our kids. I want the same for my son and he deserves the same. There are many people who are not living quote "Successful" lives in this world who no one questioned their right to have access to learning all they could, and exposure to opportunities. Nick is a unique person, with skills and talents and he deserves the opportunity to build the most independent life he can. So that's what I am fighting for. And if he is never able to do it alone, so be it. At the same time everything he learns to do, everything that makes him more independent, gives him an opportunity to contribute to society and reduces how much financial support he will need from me and state and federal resources. 

In a nutshell, Nick being given the opportunity to be his best is the right thing to do on a human level, and it's the right thing to do on a financial level. 

School Systems Block Kids From Moving Toward Independence

Just left mediation with LAUSD. Nice folks, no progress. My request, to create a "Individualized Education Plan". I had no success because somewhere along the journey LAUSD and its big systems opted for cookie cutter programs, over individualized programs. As a result they are leaving those who cannot benefit from the standardized programs, and those who don't fit the mold, to merely exist in programs, rather than benefit from education, by stepping out of the confines of a apecific program.

Individuals within  the district, get it. My lawyer gets it. Teachers get it. Yet everyone says' they can't build an individual plan for him.  Huh??!! Nick needs to put everything he's learned to work, to move toward the only thing that matters, independence!

Ha Ha...not going for it. It's all about the fight. It's all about knowing that my child will not benefit from memorization. Memorization is not learing. My child does not need more years of drill and kill with math, english and science, he needs opportunities to generalize all that he has already memorized, and he can't do that confined to a SDC most of the day. He has to get out of the class and use his skills.

Pray for me that logic and Nick's right to get an education will prevail over cookie cutter programs!

The End of A Journey, Son's Aging Out - A Future Fading Away

The End of A Journey, Son's Aging Out - A Future Fading Away

As I walked into summer school with Nick this morning I was hit by a wave of grief, and I didn't know what it was, or why, or where it came from.  I froze, held back tears and struggled to get my balance. I took a deep breath, and then I got it. I was face to face with the end of a journey. Next year Nick will be a senior and all that we have known; in the way of structure, things to do, support and plans based on the possibility of the future, the gift of the unknown will be gone. The future we fought so hard to make as bright and potential filled as possible, is here, and for all of our accomplishments and hard work, my kiddo has arrived at this place, still fully dependent on others and I'm so sad. 

Nick will be a senior, but he won't really graduate, because he's on diploma track. He'll stay in school somewhere for a few more years, but only because there are no options.  If I can't find a better choice for him, he'll be the 20, 21 and 22 year old on a HS campus, the special ed kid who's stuck, the school mascot who stayed behind after the party was over and the image makes me sad.  

Please know I am so grateful he will still have somewhere to go, that he has options, but I am also sad.  At this moment I feel like confirmation that a little dream (hope, prayer or denial) I had deep inside that he would have more, unexpectedly just up and died today! 

I know I have to find another dream, another perspective and I'll get my wind back. Just had to share, to be heard, because I know so many of you appreciate my positivity and a few have asked if I ever just loose it?  The answer is yes, I do. Today I did.  I'll pick myself up, and I'll be good until the next time, the next wave, the next visit with the grief that keeps on giving. 

NBC's Special on Autism and Aging Out; is There Hope?

NBC’s Dateline on Autism; Aging Out: What Next?

NBC's Dateline aired "On The Brink," an hour-long special which focused on autism and the issue of aging out of school-based services.  It was a show where I didn't have to be psychic to know what was coming next; a crisis for our children, families and communities. Our communities have not sufficently addressed the issues facing families for our children for life after highschool, ongoing education, to access to vocational programs, or housing. Individuals with autism are not being given consistent access to what they need to contribute to society, work and share their gifts. Many young adults on the spectrum can work, they can pay tax's they can financially contribute to our society, and we need programs to make this happen. 


In the end, the program shared what the families had found for their children, and sadly it was very clear that ASD is still the survival of the fittest illness, with families who have one or a combination of resources; money, time, education, determination and support finding something, after long struggles. Often the something beign far from whey they wanted, but more than what was typically available.  
I wonder when it will change. Probably only when we change it. 
Lastly, we began life skills at home when Nick was 11 and I'm so thankful we did. Today he can do chores, he has learned to be consistent, follow direction and mostly engage in un-desired tasks. I did'nt know how important this would be when we started, but I know now....thank goodness we started at home because his school can't offer what he needs. Donna

More on Transitioning/Vocational Skills;

http://autismdaybyday.blogspot.com/2011/05/transitions-please-bring-on-chairs.html
http://autismdaybyday.blogspot.com/2011/06/getting-it-changes-transitions-and-our.html
http://autismdaybyday.blogspot.com/2014/03/employment-may-lead-to-improvement-in.html
http://autismdaybyday.blogspot.com/2013/09/whats-working-celebrating-vocational.html

https://youtu.be/X1zgCxCntDE

The transition to adulthood can be an overwhelming experience for any family, but it is often especially difficult for families in the autism community. Many aren't sure of what is to come on the road that lies ahead, and as a result, the journey can seem daunting. 

The documentary Sounding the Alarm tells the story of Kent Martling, a 21-year-old with high-functioning autism who attends Riverview Boarding School in East Sandwich, Mass. At the time of the filming, Kent had only a few days left before his 22nd birthday, when he would no longer be eligible for services through the school system.

“It’s just a sad thing,” says Maureen Brenner, Executive Director at Riverview. “We’re proud of everything Kent has accomplished to date, but boy, would we love to have another few months to help him just master some of these skill areas he’s been working on.”

Brenner notes that while individuals with greater support needs will often receive services through the state after turning 22, “there are people at a higher functioning level like Kent that we describe as ‘falling through the cracks’ and may not have eligibility for services that could make all the difference in their lives,” she said. “If we don’t prepare as a society for that, they aren’t going to be the contributors to this country that they could be.”

Watch Kent’s story below:

Watch the full Sounding the Alarm documentary here.

Autism Speaks has a multitude of resources to help families of individuals with autism prepare for the transition to adulthood:

• The Transition Tool Kit was designed to serve as a guide to assist families of individuals between the ages of 14 and 22  on the journey from adolescence to adulthood. The kit contains information on topics like self-advocacy, community living, postsecondary education, legal matters and more.
• The Community-based Skills Assessment, developed through a contract with Virginia Commonwealth University’s Rehabilitation Research and Training Center, is a tool to help parents and professionals assess the current skill levels and abilities of individuals with autism beginning at age 12 and continuing into adulthood in order to develop a comprehensive personalized transition plan.
• The Postsecondary Educational Opportunities Guide helps young adults and their families explore the various opportunities and learning environments available after leaving high school. This tool kit offers the best possible resources on the topic of postsecondary education to help families explore all of the various options available.
• The Housing and Residential Supports Tool Kit was developed to assist individuals and families as they identify and secure appropriate residential supports and services by providing an overview of housing options and tools to help access these services.
• The Employment Tool Kit provides young adults and adults with autism with tips and tools to help them research, find and keep employment in the current competitive labor market.
• Autism Speaks is committed to increasing services and expanding opportunities for the rapidly growing population of young adults and adults with autism. To that end, we have launched a Housing and Community Living initiative to increase access to housing and residential services of adults with autism by reducing HCBS waiver wait lists and improving housing vouchers, and to expand the capacity of service providers who care for them. You can read more about our HCL initiative HERE and sign up to join this initiativeHERE.