Friday, January 22, 2016

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.


  1. Thank goodness you are engaged in Nick's education and transition activities, Donna. Every year a parent comes up to me wide-eyed with a story about how her son is about to "graduate" from HS and there is no plan in place for life after high school, aka "the rest of his life." This issue is too important to trust school officials to manage, no matter what IDEA promises. Parents have to be the main drivers as transition becomes more imminent. If a parent thinks he is too busy to do this, then just wait until there is a developmentally disabled adult wandering around the house with nothing to do. At that point, all bets are off.

  2. Have you seen this documentary about a teacher in New Jersey, named Janet Mino, who helps young men (mostly) age out of high school? She tries like hell to get them transitioned into some type of program after they graduate, because the school district itself cannot/doesn't automatically do so. She's an amazing teacher. You can rent it on Amazon, or get the 30-day trial to SundanceNow via your Amazon Prime subscription, and watch it. It's not all success stories, but it's pretty amazing to see someone so dedicated to her students.

  3. Whew.....I dont know why but based on what I read....You took all my assumptions straight to the head.I knew after my sons first year of kindergarten..Nooooooooooooooooo.I tried another school and instinctively knew this is bot going to be effective becauss you have only two choices: General Ed or Special Ed and in the later each child has a vast or little knowledge and need to have on Id plan..My son is 12. I began reading your blog and countless others where I see no life skills nothing to implement tangible skills. I wasnt going to waste another year with the school system.I have put in 7 years of time and countless hours to acheive sucess for him to have something rather than sit in a class and at the end..NOTHING. I am not saying its easy vit it wasnt in my plan.I always look at him and say of Id left you in the school system it would have been a waste. Each kid has their iwn learning style. As you stated whats the point of adding and subtracted when there is no way to implement as I have to PRACTICE each skill set and place in make believe situations.I couldnt allow hum to attend school with teachers and educators not versed in Autism and grouping them in one bunch and not having high expectiobs..I am exhausted and I would rather be than had him spend 20,000 hours as a sitting duck. Everything you say I envisioned to be this is what I didnt want. It was hard for me but I knew it would be even harder realising if I sisnt intercede I would be even more devestated trying to make up for lost tume.GLAD TOO SEE YOUR ON TOP NICK PROGRESSING INTO VEING A PRODUCTIVE ADULT AND NOT JUST EXCEPTING THE LOW LEVEL EDUCATION THE ARE JUST HANDING OUT..APPLAUDE FOR NICK'S MOM.

    1. Oh...I take him to self check when I go to Walmart and allow him to scan items and pay with out the other distractions and let him fix his own drinks at 7-11 and pay..I basically make each day teachable moment. At the library I allow him to check out books at self checkout and he takes out trash.I do quite a bit to roll over from what I teach as you prepare things in oven. Check back at the time he needs to be back and turn on oven.I am able to incorporate these things through out the day where as I have taught the skill set.I basically introduce a skill in baby atsps thwn practice it a little at time..bit Repetition and basic he usually needs directives but after sometime can implement its a work year un progress and by me being the teacher I am able to process what his able to understand by me making a picture for him to draw conclusions and example.Basically. Demostrate, Practice, Repeat.

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