How to Make Sure Kids With Autism Reach Their Potential

Slow and steady and never give up! 

When Nick was 8 years old a behavioral agency informed me they would be ending his program. When I asked why, I was told in their professional opinion he had plateaued. 

I will never forget how this so called expert stood before me, straight faced , emotionless and explained how children with Autism reach their potential around age 5 after which they don't expect to see much progress or significant change and they believed this to be he case with Nick. I was so angry. I literally yelled at her "Plateaued!!!. On what planet does any human plateau at 8!" 

How dare anyone who is charged with helping children, pass this information on as if it was fact. If I had been another mom, I might have believed this "Expert" and given up right then and there and robbing my child of the opportunity to become his best self. Instead, I refused to let anyone tell me my son was without potential and his developmental life was over. I mean who writes off an 8 year old! 

I am so glad I did not listen, because she could not have been more wrong! 

For the past 21 years we have worked everyday to expand Nick's capabilities and it has paid off. When he was 8 going to the dentist meant being totally restrained. Today he sat in the dentist chair unrestrained, as the doctor drilled and filled his first cavity. Not a scream, or a dangerous wiggle, or any breaks to get the job done!

I know his progress does not look like a typical kiddo, it looks like Nick, slow and steady, up and down, forward and back, but in the end all small steps forward. Our goal is to help Nick become as independent as possible and the version of him he can be, not he best version of anyone else. We constantly introduce new things, repeat known things to help him achieve mastery. We always keep in mind, just because he didn't like it at 6, doesn't mean he won't like it at 8 or 10. Or just because he couldn't do it at 12 that doesn't mean he won't be able to do it at 20. We just keep going slow and steady until suddenly we notice a thing...

"Nick followed 3 multistep instructions independently."

"Nick used a full sentence, unprompted."

"Nick did great in the dentist office today." 

"Nick made breakfast all by himself." 

"Nick was not aggressive today."

"Nick offered to share his food."

"Nick just worked independently for 1 hour." 

"Nick figured out how to work the paper shredder by himself."

"Nick made his bed without any assistance."

"Nick did all of chores without any prompts."

These success's may not sound like much to all parents, but for me and Nick they mean the world, literally. Every one of these achievements is directly connected to Nick's independence and his independence is connected to his quality of life including how much time he spends in the community. 

It has not been easy. That said, he had not plateaued then, and at 23 he has still reached his "Plateau".  Nick is a human being and just like the rest of us, when given the opportunity to learn he will. It's been a lot of work for me and Nick, but I am so grateful I didn't accept that my 8 year old Nick had plateaued.  

Autism; Aging Out in a Covid Pandemic – Part I

"Aging Out" - A Mom Releases Fear Built Over a Lifetime. 

For years I have lived with fear. Fear that feels like a quiet hum; always buzzing on the fringe of my consciousness. Fear, I think every parent who has relied on educational and therapeutic support for their child's care can relate to. 

It is fear of what those of us in the developmental disabilities community calls “Aging Out”, and it’s our collective Boogie Man!

For most of our children there will be no ongoing education, no higher-level learning, no exciting jobs, careers, dating, independent travels, marriage or children. Like other kids they graduate from high-school with lots of congratulations and accolades for a job well done, but the words fall flat when they are sent home to nothing or lack luster day programs. 

Since his diagnosis, I imagined by the time he graduated from high school there would be a variety of viable educational, work and life programs for this growing population. That has not been the case. The pickings are slim and although many programs sound good and the brochures look great, underneath, today's programs are not much different than the day programs of the past.  That is why I see images of my son – who deserves to continue to grow and learn like everyone else – overweight, being driven around town in a white van, eating donuts and junk food walking with a colorful rope tied around his waist. The rope connects him to another person with developmental disabilities, who connects to another and this continues until the group forms a long line connecting them as they all walk shopping malls and assorted destinations with no real purpose. The thought of that being his life once he “aged out” is what I have been afraid of since he was diagnosed with autism 20 years ago.

But few things happen exactly as we imagine, including “Aging Out”. Thanks to Covid 19 Nick effectively aged out sooner than planned.  But it wasn’t just our household facing this drastic shift, the entire world was sent home, not just Nick.   And instead of going from graduation to no supports, last March we were thrown into a different kind of chaos eliminating school, friends and supports over a 5-month period instead of overnight.  

Instead of his school experience and supports ending the summer school concluded, Nick went from school to home, to online school (not useful for Nick) to online graduation, to online summer school, to nothing. Amidst the chaos of Covid all families were stressed with change, everyone was home, and there was nowhere for him to go because everything was closed. So instead of “Aging Out” being the biggest concern in my world, it was just one of them.

 I was not alone is sudden change, which in a weird way seemed to soften the impact of the moment and what was to come. I was just like every parent in the country struggling to figure out what to do with children who were suddenly home all day!   I was like all the other parents struggling to be their kid’s teacher, coach and playmate while trying to work myself in a Covid-19 world.  I don’t mean to be a jerk, but there was something oddly comforting about knowing I was not alone, because in a way all of our kids had just “Aged Out”, even if only temporarily. Ironic that families around the world were experiencing the pain and panic I knew was coming, but they never expected.

I however, did have an advantage over most parents because this is not my first fear rodeo! This phase mirror’s the early stages when Nick was diagnosed with Autism. While other 2- and 3-year old’s were going to preschool, I was sent home, with my nonverbal 2-year-old kiddo in tow, to figure out our life on our own. Armed only with the knowledge that autism was a lifelong developmental disability with no known cause or cure that would require lifelong care. I remember feeling like I was staring into the abyss with no idea what to do, where to go, what would come next or how we would handle it.  It’s been a long journey from diagnosis to aging out. Yes, I am fatigued, but I am so grateful to have made it here. As I stare down the tunnel of what’s next, I am hoping the bright light, is a flashlight to guide me and it is not a train.

Parents of most neurotypical children anticipate a life after high school graduation for their children as a stepping stone into the future. A future, commencement speeches describe as filled with purpose, hope and optimism. That is not the reality of most families raising children with autism and other developmental disabilities. We don’t experience graduation as the start of a new chapter filled with exciting possibilities, purpose, college or work, dating, marriage and children. Instead the landscape for life after high school for our children looks like the end of their best times, a downhill slope offering little or no hope for the future.

Why? Because the world does not value investing in their ongoing education or building a future for our children.  I took Nick off the diploma track to delay this moment as long as I could. Leaving the diploma track meant he could stay in school until he turned 22. Staying in school provided an opportunity for him to continue to learn, while staying engaged in a safe regular routine with his friends for as long as possible. I took him off the diploma track while he was in middle school specifically to postpone the inevitable; the day school would end and with it  options for an engaging fulfilling life. 

Since his diagnosis, I imagined by the time he graduated from high school there would be a variety of viable educational, work and life programs for this growing population. That has not been the case. The pickings are slim and although many programs sound good and the brochures look great, underneath today's programs are not much different than the day programs of the past.  That is why I see images of my son – who deserves to continue to grow and learn like everyone else – overweight, being driven around town in a white van, eating donuts and junk food walking with a colorful rope tied around his waist. The rope connects him to another person with developmental disabilities, who connects to another and this continues until the group forms a long line connecting them as they all walk shopping malls and assorted destinations with no real purpose. The thought of that being his life once he “aged out” is what I have been afraid of since he was diagnosed with autism 20 years ago.

But few things happen exactly as we imagine, including “Aging Out”. Thanks to Covid 19 Nick effectively aged out sooner than planned.  But it wasn’t just our household facing this drastic shift, the entire world was sent home, not just Nick.   And instead of going from graduation to no supports, last March we were thrown into a different kind of chaos eliminating school, friends and supports over a 5-month period instead of overnight.  Instead of his school experience and supports ending the summer school concluded, Nick went from school to home, to online school (not useful for Nick) to online graduation, to online summer school, to nothing. Amidst the chaos of Covid all families were stressed with change, everyone was home, and there was nowhere for him to go because everything was closed. So instead of “Aging Out” being the biggest concern in my world, it was just one of them.

 I was not alone is sudden change, which in a weird way seemed to soften the impact of the moment and what was to come. I was just like every parent in the country struggling to figure out what to do with children who were suddenly home all day!   I was like all the other parents struggling to be their kid’s teacher, coach and playmate while trying to work myself in a Covid-19 world.  I don’t mean to be a jerk, but there was something oddly comforting about knowing I was not alone, because in a way all of our kids had just “Aged Out”, even if only temporarily. Ironic that families around the world were experiencing the pain and panic I knew was coming, but they never expected. 

I however, did have an advantage over those parents who had not been caring for their children 24/7, because this was not my first fear rodeo! I had experience providing all of his education at home, and I since my son didn't have friends, or playdates I was used to providing his social life. Who, know that would be an upside! But it was because this phase of our journey mirror’s the early stages when Nick was diagnosed with Autism. When I was sent home armed only with the knowledge that autism was a lifelong developmental disability with no known cause or cure, that would require lifelong care. While other 2- and 3-year old’s were going to preschool, I was home with my nonverbal 2-year-old kiddo trying to figure out life on our own and learning how to be everything to my child. 

I remember feeling like I was staring into the abyss with no idea what to do, where to go, what would come next or how we would handle it.  
It’s been a long journey from diagnosis to aging out. Sometimes moving unbelievably fast, and other times painfully slow.  But we made it. We are staring down the tunnel of what’s next. Praying and hoping the bright light at the end, is a flashlight to guide us and it is not a train.
 
 

 

Here's How Secretary of Education, DeVos will Destroy Special Needs Programs

One of Betsy DeVos' favorite programs makes special-needs kids give up federal benefits

·         Writer: Chris Weller

School-voucher programs — systems in which public funds are diverted to help kids attend private schools — are contentious for a number of reasons.

Secretary of Education Betsy DeVos has been a vocal advocate for voucher programs, but critics say they can drain funds from public schools, increase rates of segregation, and, according to some research, offer few actual benefits to the students who use them.

For parents, vouchers create a more immediate dilemma: In many states, special-needs kids who use vouchers must surrender the federal protections afforded to them by the Individuals With Disabilities Education Act (IDEA).

These benefits include certain legal protections if a child acts out in school, a guarantee to receive an education on par with a public-school student, and protections regarding the teacher's qualifications.

It's a paradox that often eliminates the desire to use the voucher, and one that sees many students returning to public school within a few years, according to the New York Times.

"The private schools are not breaking the law," special-education lawyer Julie Weatherly told the Times. In several states, including Colorado, Arizona, Mississippi, and Oklahoma, private schools are free to make it a condition of attending the school that parents and kids must waive their federal rights.

In other states, schools are free to decide for themselves, as the law makes no mention one way or another.

Secretary DeVos has held up school vouchers as an example of "school choice," or the ability for parents to pluck their kids from a public school and drop them in a private or home school. On several occasions, she has compared the value of picking schools in a free market to the luxury of choosing Uber or Lyft over a taxi.

The laws regarding special-needs vouchers may signal a roadblock in making education more like a private good.

In Wisconsin, for example, these vouchers cost public school districts $2.4 million in state aid. The money helped fund 202 students with disabilities to attend private schools. Critics of the Wisconsin voucher program, such as the family coalition Stop Special Needs Vouchers, arguethe laws leave private schools free to ignore IDEA's protections, which makes voucher programs less effective yet still costly to taxpayers and possibly detrimental to public schools.

Proponents of vouchers make similar arguments as DeVos and President Trump. In the most conventional view, vouchers give parents the freedom to place their children where they'll learn best. Advocates say the long-term effect is a system in which kids are sorted more effectively, with fewer wasted costs.

Mark Dynarski, an education researcher and voucher expert, says vouchers are still a fairly minor force in American education. On a yearly basis, waves of kids move in and out of a given public school due to changes of address — and they do so at rates far exceeding those of vouchers.

"Given the kinds of waves happening inside schools," Dynarski recently told Business Insider, "it's hard to see how vouchers actually cause the school to stop what they're doing and say, 'We need a plan to respond.'"

Teachers Call Trumps Billionaire Education Secretary Nominee Public Education Enemy #1

Trump nominee for Education Secretary faces fierce criticism from teachers unions that she is working against public education. 

This belief was reinforced when billionaire Betsy DeVos - dubbed public school enemy # 1 -  refused to answer important direct questions critical to people with limited financial resources and those with disabilities. And perhaps most surprising response came when questioned by Senator Chris Murphy of Connecticut the safety of our children in school. Her response on having guns in schools; guns in schools could 'protect from potential grizzlies' . 

When asked does she agree that schools who receive federal funding be held to the federal law? Specifically of IDEA (Individuals with disabilities act), bullying and violence? She was nonresponsive and when pushed,  finally said she would leave bullying to the states and she never responded to the question on IDEA.  When asked if vouchers - a program she has championed - would be made available to children enrolled in both special education and general education, she did not respond, rather she skirted the question and referred to a scholarship program in Florida. 

My question now is, how does someone seeking the highest education post in the United States, and a critical post for the future of this country not have a response to these legal, ethical and moral questions?

Asked outright by Sen. Bernie Sanders of Vermont whether she got the job because of her family's political contributions, DeVos said: "As a matter of fact I do think that there would be that possibility. I have worked very hard on behalf of parents and children for the last almost 30 years."

On tuition-free public colleges and universities, DeVos said: "I think we also have to consider the fact that there is nothing in life that is truly free. Somebody is going to pay for it."

She skirted Sanders' question on whether she would support making childcare free or much more affordable for low-income families as is the case in many countries, saying only that she felt strongly about "parents having opportunities for childcare for their children."  

"But it's not a question of opportunity," Sanders fired back, raising his voice. "It's a question of being able to afford it!"

Responding to fierce criticism from teachers unions that she is working against public education, DeVos told the committee that she would be "a strong advocate for great public schools."

"But," she added, "if a school is troubled, or unsafe, or not a good fit for a child — perhaps they have a special need that is going unmet — we should support a parent's right to enroll their child in a high-quality alternative."

Ethics and morality play a role in education, and it seems to me Ms. DeVos is unclear on her position when it comes to those less fortunate then herself. 

10 Things about Special Day Class (SDC) Schools Don't Want You To Ask

The first special day class I visited for Nick confirmed every negative stereotype I had in my brain convincing me that Nick should ever be placed in one.

Over the years I've come to question if any child with autism could reach their potential in an SDC setting, yet I know there are little or no alternatives for many of our kids. What I know now is, it is possible when viewed as something we shop for, vs something we just accept or take for granted.

The big idea here is too many SDC's and the teachers who run them are still operating from the perspective that our children will never developmentally grow beyond elementary school.  As a result, they set the bar low and our children suffer, never getting the opportunity to reach their full potential.
Sadly many SDC teachers are still treating students, even in high school, like babies, their "special children" unaware their perceived limitations of each student are part of the problem. For years I thought this would change, but when Nick came home from summer school last week with a "Certificate of Excellence" in an owl cut out aimed at K - 2, my first reaction was "Really....why the heck are you treating my 18-year-old like a child?"  Another reminder change is slow, and we have to teach teachers too!

Ten things you need to consider when placing your child in an SDC? 

1. Does the room feel age appropriate? If the classroom, is not in elementary school, but it looks like one the setting screams, we think your child will always be a baby! 

2. Do conversations between students, teachers, and aids sound like they are talking with a kindergartner?  Individuals with developmental disabilities should be spoken to in a normal fashion, and not talked down to, no matter their age. 

3. Is the class engaged in age-appropriate activities?  I don't mean activities should not be modified for each student. What I mean is does your 17-year-old come home from a field trip with a paper hat on his head?! 

4. Do class activities reinforce negative stereotypes of special needs children? Are they asked to line up and walk single file to the cafeteria in middle school...when the other students are not?  If you're not sure, just channel your inner 10 to 18 year old, and consider the things SDC students did that you laughed at. 

5. When you go in the room, does the teacher sound like a teacher or a parent? Teachers should always sound like instructors, leaders, a person of authority. Teachers who coddle our children often fail to see their potential and instill confidence to achieve more. Pity only stunts their growth. 

6. Are the SDC students being isolated from the typical students during lunch, recess, and other nonacademic activities? When SDC students are not included as much as possible in the general education population during lunch, recess, and other nonacademic activities everyone loses. The general population is denied the opportunity to learn about diverse populations, which will be critical in a world where 1 in every 54 individuals has ASD. In turn, our students are not given the opportunity to mirror and learn from the general ed population.

7. Are you welcome to visit the class at any time? Be skeptical of any classroom where parents are not welcome. No matter what anyone tells you about a classroom the only way to really know how it is run is to see it in action. Yes, you have to follow the school rules, which vary from campus to campus, but you are legally entitled to observe during school hours. 

8. Does the SDC have a process for generalizing the skills learned in the classroom? ASD students memorize information, which is often not retained over time when they are not taught to apply the information in their day to day lives. No matter how many academics are taught, if the SDC cannot demonstrate a plan for each student to generalize skills into the world outside of school, your child may graduate school a social and functional illiterate filled with information that cannot be used to achieve or further their independence. 

9. Does the SDC teacher have experience working with the unique needs of children with autism?  Too many educators are still unaware of the unique and often complex needs of children with autism.  Don't let the small classroom fool you into believing each child is being well serviced. Children with autism, down syndrome, epilepsy, and an array of other disabilities all have unique needs and learning abilities and styles. there is no such thing as a one size fits all when it comes to teaching. 

10. Is your child showing measurable growth in his SDC?  The school expectations for our typical children are pretty universal, and it's easy to let society, our school system, and educators pull our children along the milestones of an "educational" path. On the other hand, due to their individual needs, there is not a universal standard of milestones for special needs chidren. As a result, it's far more difficult to measure our children's progress and map where they are in the process. A great teacher has a plan and understands the goal is independence.  A qualified teacher will help you understand your child's academic/school goals and can tell you how they apply to their eventual independence.

If any of these things are happening in your child's SDC, don't give up, talk. I've found that most teachers want to do a good job, and many have just never been educated about our children. And if you find the teacher won't listen, or can't hear you, go to the next person in charge and express your desire  is not to be disruptive, you just want to help to create a better setting for you child and the other students.  

The Future of Autism

Does anyone else wonder why it is that High School Graduation marks the beginning of an exciting journey for typical teens, and in contrast it's the end of the road for individuals with Autism?  

A conversation with a typical teens. 
Congratulations, you graduated and we're so proud of you. Now go to college, or travel, or get a job. Have fun, learn, make mistakes, try on what fits to see what you want to do with your life.


A conversation with a teen with autism: 
Congratulations, your parents took you off the diploma track so you can stay in HS for 3 more years! You will have a place to come everyday until you turn 22!  After that, well you go home and your folks help you figure out how to fill your day.

Opps, your family didn't know what had to be done to continue your education a few more years :(, and you're not college material?  Congratulations you graduated!!! That's it, go home and be proud. Take a break until your family finds programs to help fill your day.

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.
.

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!

Is Your IEP Working? Mom Looking for Solutions in High School

The Proverbial Snowball Before Aging Out...Education and Support after Middle School.

 

Time is going by and here we are 15 years later, fighting the same battle with a few key differences; time is not on our side, gone is the idea that Nick might "snap out of it" with early intervention, his potential is no longer a total mystery and the clock is ticking, with us getting closer and closer to the day when there's nothing for him to do. Closer and closer to the day - that if I don't do all I can do - there's nothing but regret left for me, and loss of opportunity for him. I am the only one who's journey to get the best services for her kiddo, looks more like Mom on a treadmill than Mom on a journey!!!  I am the only one out there who thought after all the work we've done to make things better for our kids, we would be done battling day in and day out to get appropriate services by the time they were 17???   Was I the only one who thought maybe, just maybe in the past 15 years since the ASD epidemic began, the education system would have adapted, improved and prepared itself to accommodate the children that would become adults?  

I am sad to be working as hard now to find options for Nick, as I did when he was first diagnosed! I wasn't truly prepared for that. I held out hope that when he got to be this age, things would be better. Intellectually I knew it was possible the system would not be ready. I even talked about it, but emotionally I was in denial, I just wasn't prepared to be here again. I thought I’d matured, gotten calmer. Nope I’m still the same claw carrying mom I was when this journey began. I'm angry, and I'm sad this is where we are. I wasn't truly prepared for the degree of limited resources; I wasn't prepared for the small amount of qualified behaviorist/therapist/programs available to work with young adults vs kiddos. 

Right now I don't know the answer, but I do know we have to find one.  

I could use some inspiration right now? Any ideas? 

Advocate, Don't Discriminate!

I don't know about anywhere else but here in hot LA teenage boys typically don't smell so great all the time, especially after PE. This isn't me giving the boys a bad time, it's just how it is and it's easily proven by a quick stroll down a high school hall when it's crowded with kids, or by just popping your head into the locker room for a few seconds. Yikes!!!  

So riddle me this Batman. On what planet would a teacher send a special ed kid - who has a one on one aid - to the nurse's office for body odor?  What is the nurse going to do? Examine him for extraordinary odors?! Then what? Again, maybe it's just me but, it seems if a kid really smelled that bad there were simple solutions vs humiliating him and sending him to the nurse who could do little or nothing. For one, the aid could simply take the kiddo into the bathroom to wash up. Or, in this case call his at home mom and ask if she could bring him a new shirt and some deodorant.  

Have you ever heard of a typical teen boy being sent to the nurse for body odor?  If this was the case, we would have to double up on school nurses to meet the demand, LOL!

This is crazy making to me and, pardon the pun smells of injustice! The kind of unconscious bias our kids in special ed face every day. Just sadder when the ones with the bias are the ones who are supposed to be looking out for our kids. 

ASD.. Street & Community Safety; ASD and Teaching Safety Instruction Part 1

https://www.youtube.com/user/AutismDayByDay/videos

This is an ABA approach to priming safety in the community as taught by Nick's team. We are having a very rough time with safety, so we created this tool. It's a 6 part short video maybe it will help you too. 

Donna

Priming Before the Dentist: A Video to help our kids prepare and lower anxiety.

It's been a slow process but every year the visits to the dentist get a little easier, no doubt because Nick knows they are not going to kill him! Or maybe he's just learned what to expect :) Here's a video that might be good to show to kids in preparation for a trip to the dentist.

http://youtu.be/ZCMHGHox95s

"School Choice" Not for Children with Disabilities

'School Choice' -- As Long as Your Child Doesn't Have a Disability

Follow Shayna A. Pitre on Twitter: www.twitter.com/shayna264

Shayna A. Pitre 

Legal Researcher and Writer

Imagine asking someone to "speak up please" while cupping your right back ear and leaning forward slightly to hear imperceptible words uttered. Again, you ask, "Can you please speak up." The teacher, with pursed lips, looks at you and then says in an annoyed loud voice "the lesson plan today will be to discuss the first chapter of the readings." Giggles fill the room. http://i0.huffpost.com/gen/1760351/thumbs/n-TEACHER-EVALUATION-large570.jpg

Slightly embarrassed you look down and tell yourself never to ask these questions again. It is better to not know what is said to save yourself the condescension and humiliation of being different. You, with a tightened chest and heavy face, tell yourself it is better to live with your disability in silence, where only you can hear it.

The above experience is not merely fiction. It is widespread in schools that accept voucher students, students whose parents transfer their children from lower-performing public schools to higher-performing private, often parochial schools. Low-income parents are able to transfer their children from failing public schools to private schools with state, sometimes federal money. In other words, low-income parents choose the school their children will attend. This is known as "School Choice."

However, disabled students are not always given true choice. No choice exists if private schools refuse disabled students' needed services, and this is precisely what has happened in many places.

In fact, the American Civil Liberties Union (ACLU) filed a lawsuit against Wisconsin and several schools in Milwaukee for violations of the American Disability Acts (ADA) and the Rehabilitation Act (RHA) § 504.

What is ADA?: ADA is a federal law that prohibits discrimination on the basis of disability by public entities. It protects the disabled from discrimination on the basis of their disability in services, programs, or activities of all state and local governments. It extends to certain federally assisted programs, and all state and local governments, including those that do not receive federal financial assistance.

What is RHA?: The RHA is another federal law that requires any institution that receives federal funds for any purpose not to discriminate, exclude, or deny benefits to the disabled because of handicaps. This requirement extends to private and public schools alike that receive federal funds.

ACLU's Lawsuit: ACLU and the parents of several children brought a lawsuit against Wisconsin and several private schools because they failed to offer services to their disabled children. These parents sent their children to those schools with private school vouchers serving low-income parents. ACLU has filed this suit because these schools have accepted federal money but denied disabled students appropriate services; private schools that accept federal funds are required to provide disabled students certain appropriate services by law.

The Complaint: According to the ACLU complaint, only a meager 1.6 percent of disabled students attended voucher schools, while there are an estimated twenty percent of disabled students in Wisconsin. This disparity between disabled students attending private schools with a voucher and disabled students attending public schools is exacerbated when the quality of services offered to disabled students is examined. Not only are the proper services not provided, private schools openly state the same level of services, if any, will not be offered at the schools. This statement is further amplified by the schools' own actions.

The Stories of 3 Disabled Children

B.J., is an eighth grader who qualifies for disability services. She has Oppositional Defiance Disorder and a mood disorder and was enrolled in special education at public school, but her parent transferred B.J. from public school to a church-run private school. So, during 2010-2011, B.J. attended the private school, Concordia University School (Concordia), where her tuition was paid for by a voucher.

The ACLU complaint alleges that Concordia knew of B.J.'s disorders but did not provide any accommodations to her. Without providing any accommodations for B.J.'s disabilities, Concordia placed B.J. on a "behavioral" contract. Soon after placing her on this contract, the school expelled B.J., alleging she broke the contract. Consequently, B.J. had to return to the public school she left. Federal law requires schools not to discipline students for actions that arise from their disability.

S.E. is a four-year old child who is developmentally delayed and receives special education at public school. S.E.'s mother applied for S.E. to attend Messmer Catholic Preparatory School (Messmer). Messmer told S.E.'s mother no placements tests were required.

However, the complaint alleges that after Messmer was informed of the developmental delay, Messmer required placement tests and screenings. Messmer later told S.E.'s mother she should "give some serious thought to whether or not Messmer would be the right place for S.E. because it would not be able to give him what Milwaukee Public School was giving him." The school urged that S.E. be released from his special education Individual Special Education Plan. The mother refused to release S.E. from the Individual Special Education Plan; a screening process was conducted, however. When the lawsuit was filed, S.E. had not been admitted to Messmer.

S.E.'s mother also has another disabled child: K.S., an eight-year-old with Attention Deficient Hyperactive Disorder (ADHD). After K.S.'s application was complete, according to the complaint, Messmer conditioned K.S.'s school acceptance on taking medication for ADHD. K.S., however, was neither on medicine nor enrolled in special education at public school. S.E. did not think her child needed medicine. Nevertheless, Messmer refused to admit K.S. if he did not take ADHD medicine. Messmer informed the mother that if her developmentally delayed child "had academic problems, they did not want to be blamed." When asking whether her eight-year-old was on ADHD medicine, the school emphasized that "Messmer had a fast-paced academic program."

North Carolina

The above-mentioned individuals are the parties who filed the complaint against Wisconsin for violation of federal disability law. Wisconsin is not the only state where taxpayer dollars outrightly support discrimination. North Carolina is another. North Carolina implemented a similar voucher program where most of the vouchers are for religious, private schools. As of February 2014, Greensboro Islamic Academy (GIA), a private, religious school, was sought after by voucher applicants. Not all applicants receiving state vouchers are treated equally at GIA. The unfortunate parent who fills out a GIA application for her disabled child will be taken aback when she reaches the "RESTRICTIONS" section of the application and reads:

"Children with emotional and severe learning disabilities may not be accepted at GIA, as necessary program are not available to meet the needs of these children... After accepting a child, if it is determined that he/she has emotional or behavioral problems, and/or severe learning disabilities, etc. the child may be asked to leave..."

However, in February 21, 2014, Superior Court Judge Robert Hobgood ordered North Carolina to suspend its school voucher system. Dick Komer, a lawyer representing the parents, plans to appeal the decision. Will this victory be short-lived? How many other states will allow discrimination through their school choice voucher program?

Many states have indeed found school choice vouchers to be unconstitutional mainly because most states' constitution prohibit educational funds from being spent on anything other than public education. In other words, most state constitutions prohibit money being given to parents to choose a private, nonpublic school for their child to attend. This would violate the state constitution, but what about federal law? What about the disabled? What about their legal claims? Why are states missing this poignantly obvious, legally meritorious argument of disabled children? Who will fight for them? They cannot fight for themselves.

Luckily, the DOJ keeps fighting for our disabled children. The DOJ sent Wisconsin's Department of Public Instruction a letter demanding the agency enforce Title II of the Americans with Disability Act. Wisconsin's School Choice Program is still being investigated by the DOJ for violations of federal law. The investigation is expected to be complete by the end of 2014. Maybe the states will catch on before then.

Shayna A. Pitre has an undergraduate degree in philosophy and is currently pursuing a Juris Doctorate at Southern University Law Center. Growing up with a hearing impaired brother has made her a strong advocate for disabled children. "Fight for Those Who Can't" is devoted to advocating for not only the rights of the disabled, but the rights of all children -- the rights of those who can't fight for themselves.