What the Public is Saying About Regional Center Service Disparities to Latinos and Blacks

If you are concerned about the differences in how regional centers are providing services, particularly to Latinos and African-Americans, we encourage you to attend: PUBLIC HEARINGS on Service Disparities Sponsored by  the California Department of  Developmental Services The Department of Developmental Services will hold four public meetings to consult with stakeholders, including consumers and families, advocates, providers, and protection/advocacy agencies, to review purchase of service data and develop recommendations to help reduce disparities. Discussion areas will include identifying cultural barriers and challenges in obtaining regional center services and the areas that need clarification for people to understand the service delivery system, as well as, plans and recommendations to promote equity and reduce disparities in the purchase of services. THERE WILL BE TWO HEARINGS IN SOUTHERN CALIFORNIA ATTENDED BY SENIOR DDS OFFICIALS: INLAND EMPIRE: Thursday, August 25, 2016 9:00 a.m. to 12:00 Noon Molina Healthcare Molina Aliso Beach Conference Room 550 East Hospitality Lane, Suite 100 San Bernardino, CA 92408On-site translation will be provided in the following languages: Spanish, Mandarin, and Vietnamese. LOS ANGELES COUNTY: Friday, August 26, 2016 9:00 a.m. to 12:00 Noon South Central Los Angeles Regional Center 2500 S Western Avenue Los Angeles, CA 90018On-site translation will be provided in the following languages:  Spanish, Cantonese, and Korean. For more information - Click here Let's get a big turnout.  Please join us!

Riddle me this? Where do we all send our kids where Common Sense is Not Common????

Riddle me this? Where do we all have to go, where Common Sense Not Common???? School! Beware the "Drill and Kill" it starts in 1st grade and continues to follow as a preferred educational method through high-school, which makes no sense! Let's be real, if my child has not learned the calendar by High School, continuing to do "Circle time and drilling months and days of the week" is not going to cut it! Clearly he doesn't care, or get the relevence. 

Until recently I thought that was the epitome of "No Common Sense", it couldn’t' get any worse. And then BAM...surprise more crazy crazy! My son who is not on the diploma track, has to sit in the classroom and do worksheets for English, math and history because it's common core! Common Core for WHO!!!  Nick is not on the diploma track  and he doesn't need to know the history of America or recite the Presidents. What he needs is life and vocational skills. He needs to be able to walk from point A to point B safely. He needs to be able to ask questions and follow directions relevant to doing a job. He needs to use the math and reading skills he has already learned to do a job. He needs to be given an IEP that lets him take what he has learned from Kinder to 9th grade and apply them. He needs to generalize what he has learned to the real world, so when he leaves school he has learned something that will help him exist in society! He needs and deserves an education that helps him to be independent, and memorizing information that means nothing will not get him there. 

However LAUSD seemingly disagrees with federal law, that states a student’s IEP is king. So, here I go again folks another battle. Wish me luck! 

Sincerely,

Angry Mom! 

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. 

Expanding Food Choices Can Work: Nick from Nuggets to Octopus!

Nick's Food Life

0 to 12 months - Nick could not properly digest any food. Everything he ate from breast-milk to formula to soy upset his stomach and had him in severe pain. He cried day and night, so much so he got a herniated belly button!

13 months to 3 years old - Everything Nick ate made him sick and he suffered from chronic diarrhea for 2 years.



4 to 8 years old - I was so happy he was eating and not sick, it was easy to live with the limitation of a diet consisting mostly of potatoes and chicken in every form imaginable. He loved chicken, he became obsessed with it.  I knew we had a problem on our hands after I nearly crashed the car when we drove by a McDonald's. Nick unbuckled his seat belt, leaped onto me from the back seat screaming "McDonalds" and demanding I get him McNuggets!



8 to 12 years old - We began working to vary his diet, against his will. He wanted chicken tenders or nuggets and fries so much he threw a massive tantrum and began banging his head against a restaurant wall when his food choices were not on the menu.  We knew things had to change. Slowly and  consistently we began adding more foods, implementing the "first this, than that" rule. Adding one food at a time, was a process that made it easy for us to learn what he liked, while keeping an eye out for allergic reactions.



Today - This slow and steady process has paid off. Nick eats bags of veggies, salads and just about anything. Last month he nibbled frog legs and wanted more! He requested roasted duck for Christmas, and last week he asked if he could eat octopus! I agreed, took him to a sushi restaurant, ordered it and he loved it, suction cups and all!!!

Thanks to ABA and alot of patience we've gone from nothing to everything...amazing!

PS: He loves animals and read animal books all the time I think he plan might be to eat everything in the book. This could bring new challenges, LOL. I'll let you know.

Autism; When Boys Become Men. A Post High School Perspective

Dr. Wiley and Donna Ross Jones
@ Stephanies Day Resource Fair

Last summer I visited "Stephanie's Day" an autism resource fair held at the CBS Radford Studios. It was a family reunion of sorts reconnecting with parents I've met over our 12 year ASD journey. I was so happy seeing them, and so proud of the parents who've started organizations determined to fill the voids in our systems of care.  As the day went on my happy feeling faded as we talked about our kids - who just like Nick were becoming men - and our concerns for their futures. As we have for years, we looked to each other to exchange resources and  positive insights on "what's next" and it was clear we had little to share, because there are few options when it comes to housing, recreation, job skills, job creation and community integration. Hope came in the form of parents and professionals, like Dr. Pam Wiley who are dedicated to addressing the critical needs of our soon to be adults. The article below, by Dr. Wiley tells the story and speaks directly to the need. http://www.asha.org/Publications/leader/2013/130401/Gearing-Up-for-Reality.htm

Gearing Up for Reality

Helping clients with ASDs find their way in the world after high school takes creativity. by Pamela Wiley

"As I wandered the resource fair with both my kids in tow, it became strikingly clear how limited the options would be for Nicholas post-high school."

"A lot of money is invested in our kids when they are young but there is significantly less as they get older. You feel as if you're on your own."

When their children with special needs are young, parents are guided and supported through most of their child's education, often starting when their child is 18 months old. But what happens after high school is over? What supports will be needed or even available? After age 21 do the services stop and, if so, who pays for speech-language and other interventions?These are the real thoughts plaguing parents of high school-age children with autism spectrum disorders. Transitioning from high school to the adult world is a critical time in the lives of all students and their parents, but it is even more daunting for parents of children with ASDs. Sheltered programs are available for adults at the lower end of the spectrum, and college or technical programs for the very high-functioning students. But for those who fall in between, there aren't as many options.

We know the incidence of ASDs is increasing-according to the Centers for Disease Control and Prevention they affect one in 88 children and, as of today, the consensus is there is no cure. Autism is more prevalent than childhood cancer, juvenile diabetes and pediatric AIDS combined. According to Autism Speaks, a national autism advocacy organization, the annual cost to society is $126 billion and has more than tripled since 2006. Schools are being asked to do a better job preparing these students for life after school. ASDs are very costly, and as these children grow older, professionals and parents are becoming compelled to create opportunities and options for them to become independent and able to find employment. I know I am beginning to field more of these questions from concerned families and it's just going to keep coming.

As members of a helping profession, we are trained to identify deficits and then work on remediation. However, at some point in the treatment process, we must adjust and refocus our thinking to identify how these "deficits" can be redefined to become assets in the workplace. For example, a student who is antisocial or a social loner will be less inclined to engage in workplace drama or office politics; the student who has a tolerance for repetitive activities may be a good fit for mundane tasks that others find boring. These traits can be attractive qualities to an employer if expressed as a positive and not a negative. We have to help our clients and their families make this distinction. And to be effective we must become more familiar with the transition process and help identify options for these young adults.

What does the law provide?

First it's helpful to understand what is legally mandated. The Individuals With Disabilities Education Act has required transition services since 1990. However, in 2004, the legal requirements were revised to require an individual transition plan typically be developed beginning at age 16. The ITP is a legitimate part of the individualized education program, which is legally binding. The goal of the transition plan is to facilitate the student's movement from high school to the adult world of work, independent living (if possible) and community integration.

Although IDEA protections end when a child turns 21, Section 504 of the Vocational Rehabilitation Act and the Americans With Disabilities Act continue to provide protections beyond the age of 21. Still, these are not entitlement laws and can vary in interpretation and implementation from state to state. The National Dissemination Center for Children With Disabilities (NICHY) is a national disability-related resource bank of information listed by state to assist families in locating local organizations and agencies. Resources include parent groups and training, as well as research-based information on best educational practices.

What we have tried

Since 1997, our center, the Los Angeles Speech and Language Therapy Center, has offered a speech- and language-based summer camp for children with ASDs and other special needs. Because we provide a variety of services, including early intervention programs, speech-language intervention and social skills training, we have long-term relationships with our clients and have watched them grow up.

Last summer we realized that several of our older students with ASDs were ready for a less structured camp experience. Camp staff and I decided to incorporate them into the camp as speech buddies. A "speech buddy" is the term we have used over the years to describe typical high school students who earn community service hours for their volunteer participation. To become speech buddies, our students with ASDs were required to participate in the same training and weekly debriefings as all of our volunteer staff. The selected students were verbal and 14 to 16 years old. They had received services from our center for an average of eight years and all had participated in at least two of our programs.

Their development during the eight weeks of summer camp was amazing. They seemed to walk with a greater sense of purpose and pride. One young man reflected on his previous noncompliant behaviors and inability to express his emotions, and jokingly described himself as a "changed man." Another remarked, "I know I have autism, but I like being treated the same as everyone else. I just learn differently from other kids." This underscores the importance of inclusion and the value of meaningful peer engagement.

However, despite the growth, there were behaviors-poor self-regulation, inflexibility, overstepping personal boundaries and pragmatic language issues related to workplace jargon or idioms-that could potentially be problematic in the workplace.

For example, one morning I observed a young man standing in the hallway looking up at the clock. When I asked him what he was doing, he responded, "Waiting for my lunch to start at 12 o'clock." It was only 11:50, and I explained that phrase did not mean for him to stop working while "waiting" for 12:00.

In another situation a young man asked a high school volunteer if he could be friends with her on Facebook. Not wanting to appear rude, she agreed. Unfortunately, our student misunderstood her intentions and began to communicate with her too frequently and made her uncomfortable. From his perspective she was his "friend," and he was just being friendly. We revisited a unit from our social skills program that addresses friendship and the difference between a friend, an acquaintance, and a person with whom we may share a common space or interest. We also reiterated the rule that "shared interests do not equal shared personal feelings."

At the end of the eight weeks, we gathered informal feedback from the students and their parents. One young man said that he enjoyed helping and working with children while another, after assisting in housekeeping chores, said he'd like to have his own cleaning business. Another student said he would like to go to UCLA and come back to work with us. For this upcoming summer, we will expand on our model to include more students and will offer an eight-week pre-vocational training program.

This type of experience and feedback can be useful to anxious parents who sometimes find it difficult to envision realistic and attainable outcomes for their children. The experience also benefits the students because it encourages them to think about their post-high school goals and gives them a legitimate voice in the ITP process. By providing them with this summer work experience, we created job and career goals for students with ASDs.

A sea change

Our center isn't the only place creating these experiences. The number of nontraditional structures and creative job opportunities for students with ASDs are increasing. Many are through nonprofit organizations that offer vocational training programs that can lead to employment in fields-such asExceptional Minds Studio, an animation studio for young adults on the spectrum with a vocational center and summer camp for graphics and animation. Another is Farming Independence, which encourages students to grow and create things on a farm, and then sell them.

Other creative approaches are customized employment, which-as the name implies-tailors a job to suit the strengths and skills of the individual. Still another, "entrepreneurial supports," creates new businesses for individuals around their interests and skill levels. For example, a student who likes to destroy things that do not appear to be perfect can be given entrepreneurial support to go to different offices to shred papers and documents. The documents could be made imperfect by possibly tearing a corner and then given to the worker to shred. A board (often composed of family members, professionals, mentors or members of the business community) would be established to ensure success.

These novel approaches are in addition to more established options such as supported employment, which allows people with ASDs to work in competitive jobs while receiving ongoing support services, and traditional job opportunities or competitive employment options for higher functioning people who, once trained, can work relatively independently.

What is the SLP's role?

Speech-language pathology services are not provided by schools after age 21. Therefore, it is imperative to address speech and language deficits related to long-term productivity, which include verbal and nonverbal communication and social groups. This engagement can begin much earlier than the start of the transition (see "After Commencement, Clarity" in this issue). Incorporating social communication goals that address workplace idioms, theory of mind and executive functioning should be written into the ITP, even for the students who may be doing well in communication and behavior. Sample goals could be written as follows:

1. Given minimal assistance, student will identify the meaning of 10 common workplace idioms (clock in, hit the ground running, keep the ball rolling) in four of five trials.

2. When given specific social situations, student will demonstrate critical thinking skills to generate appropriate solutions with 80 percent accuracy ("You come home from school and discover the door key is not under the mat. What can you do?")

3. When given social scenarios, student will correctly identify the perspective of others in four out of five opportunities when given minimal assistance ("Your friend has a party and no one comes. How might she feel?")

As professionals, we are in a unique position to find ways to leverage our students' natural abilities and fixated interests into career possibilities and encourage families to do the same. Examples of how some private and school-based SLPs are helping their high school students with ASDs are:

• One SLP collaborated with classroom teachers on her student's pre-vocational goals and reinforced them in her treatment groups using role-playing and social stories related to workplace situations.
• Another SLP opened her personal contacts list to help her students secure volunteer opportunities and gain exposure to the world of work. She most recently connected one of her students with her neighborhood dog walker.
• The care provider of a musically talented 21-year-old with an ASD asked an SLP for her thoughts on encouraging him to pursue singing. She thought it was a great idea and supported the possibility. She accompanied the young man as he initially began to sing free of charge at local clubs. He was subsequently "discovered" by a local singing legend and now receives compensation for opening her shows.

The common thread that binds all of these examples is creativity, which is nothing new to our profession. We demonstrate our creativity and commitment to these children daily as we work with them to enhance communication. Now we must use our professional skills and creativity to help them see a way into their future.

Pamela Wiley, PhD, CCC-SLP, is the president and founder of Los Angeles Speech and Language Therapy Center, Inc. pswiley@speakla.com

cite as: Wiley, P. (2013, April 01). Gearing Up for Reality : Helping clients with ASDs find their way in the world after high school takes creativity.. The ASHA Leader.

He has a Girlfriend!!?.

Yep, here he is just hanging out with the cool kids!

Wow! I just got this picture from his aid at school. The caption read "He has a Girlfriend".  My heart dropped into my stomach. No, she's never been over to visit, they don't hang out after school. No, I don't think they are going to the Prom - at least not this year, but he sure looks good and wow does he have good taste! 

ASD & Puberty Part II - “Parents, Part of the Problem, or the Solution?”

He's so big!!!

For all of you who thought my post on puberty "Boys without Boundaries" helped you, I have to share that it was perhaps an even greater help to me!  It was like letting go of a secret.  I've always believed that what we can’t put to words, we can’t put rest. We have to talk about things to really process them. Telling you the truth made it possible for me to process and let go of some of the shame, embarrassment, inadequacy and fear that shows up for me as I watch my boy become a man in a world where he doesn't fit.  

For the umpteenth time it was up to me to get out of the way, and be part of the solution not the emotional mom who unwittingly, and with all good intentions had become part of the problem. (I hate that!)  Here's what is; Nick is Nick  he doesn't see the world the way I do. I have to constantly remind myself that I can't superimpose my emotions on him!  Once I acknowledged it was my feelings, ideas, and issues keeping me from doing what’s best for Nick  things started to change. I pushed past my stuff and started talking about it, and asking more people for help.  And perhaps most important of all I started asking the questions I really didn't want to hear the answers too, but knew ignorance wasn't going to make it go away. 

As of today, none of his behaviors have changed, in fact in some ways they are worse. Puberty and how fast he's growing is playing a role in how he responds to medication, so he's way less focused, frustrated and not sleeping so good. We're working our way through it.   

On the upside, I've found that if I prepare myself and frame the really difficult conversations in clinical talk or humor or pretend I'm not really taking about my family, I can talk about the tough stuff.  This is good because our team is having direct conversations and as a result I've asked that they point out when I'm treating him like my baby, and not like the man he is becoming.  None of it's comfortable, and I’m still not ready for him to grow up. I’m just moving on the path of accepting there’s not a darn thing I can do about it. 

I’ll keep you posted. 

500,000 New Adults With Autism Will Be Looking For Work. Are You Hiring?

Will you hire him? I can hardly believe my son is one of the 500,000 children with autism who will reach adulthood in the next ten years. If you want to know what I’m concern about right now, this is it!

1 In 3 Autistic Young Adults Lack Jobs, Education

CHICAGO (AP) – One in 3 young adults with autism have no paid job experience, college or technical school nearly seven years after high school  graduation a study finds. That's a poorer showing than those with other disabilities including those who are mentally disabled, the researchers said. With roughly half a million autistic kids reaching adulthood in the next decade, experts say it's an issue policymakers urgently need to address. The study was done well before unemployment peaked from the recession. The situation today is tough even for young adults who don't have such limitations.

Ian Wells of Allentown, N.J., is 21, autistic and won't graduate from high school until next year. He is unlikely to attend college because of his autism. He wants a job but has only found unpaid internships and is currently working part-time and unpaid as a worker at a fastener factory.

He's a hard worker, with good mechanical skills, but has trouble reading and speaking, said his mother, Barbara Wells. She said his difficulties understanding social cues and body language can make other people uncomfortable.

"I'm very afraid" about his prospects for ever finding long-term employment, she said. "It keeps me up at night."

The study, published online Monday in Pediatrics, was based on data from 2007-08. It found that within two years of leaving high school, more than half of those with autism had no job experience, college or technical education.

Things improved as they got older. Yet nearly seven years after high school, 35 percent of autistic young adults still had no paid employment or education beyond high school. Those figures compare with 26 percent of mentally disabled young adults, 7 percent of young adults with speech and language problems, and 3 percent of those with learning disabilities.

Those with autism may fare worse because many also have each of the other disabilities studied.

The researchers analyzed data from a national study of kids receiving special education services, prepared for the U.S. Department of Education. About 2,000 young adults with one of four types of disabilities were involved, including 500 with autism.

It's the largest study to date on the topic and the results "are quite a cause for concern," said lead author Paul Shattuck, an assistant professor at Washington University's Brown School of social work in St. Louis.

"There is this wave of young children who have been diagnosed with autism who are aging toward adulthood. We're kind of setting ourselves up for a scary situation if we don't think about that and how we're going to help these folks and their families," Shattuck said.

Government data suggest that 1 in 88 U.S. kids have autism and there's evidence that the rate is rising.

Within the next 10 years, more than 500,000 kids with autism will reach adulthood, said Peter Bell, vice president for programs and services at Autism Speaks, an advocacy group that helped pay for the study.

"It's a huge, huge issue," Bell said. "Unfortunately there are many families that really struggle to understand what that transition ultimately entails. …They face the reality of having a child who may potentially not be able to have enough services to keep them busy during the day." "It's only going to get worse …" Bell said.

His own 19-year-old son has autism and is being home-schooled and Bell has hired therapists to prepare him for jobs and other life skills.

Carol Schall, a special education policy specialist, said the results confirm smaller studies showing difficulties facing kids with autism as they transition into adulthood, and also highlight a need for better job training services offered in public schools for special education students.

She is involved in research at Virginia Commonwealth University investigating whether on-the-job training and teaching social cues to high school students with autism makes them more employable.

Kids are taught a range of practical skills and appropriate behavior. "It takes a much higher degree of intensity for them to learn skills" than for other kids, she said.

Preliminary results show this training has helped kids with autism find and keep jobs, she said.

———

Online:

http://www.pediatrics.org

———

AP Medical Writer Lindsey Tanner can be reached at http://www.twitter.com/LindseyTanner

Let's Pray the Day of the "Mall Walkers" Has Ended!!!

Senator Carol Liu,  John, Steve & Al from Ralphs,
Barbara Firestone, Donna Ross Jones

Until Nick was diagnosed I never paid attention to how many people with developmental disabilities lived, worked or went to school around me. Sadly, until I loved someone with a disability, they were invisible to me.  

Conversely, as Nick has grown I have realized I never noticed how many people with developmental disabilities were all around me, including people employed at our local grocery store. Because of Nicky I've learned the commitment required to hire a person with special needs, and the strength of character it takes to stand up to the ignorant people who are bound to have something to say, a reason why some feel that our children are not appropriate for public jobs.

Donna Ross Jones at the Ca. Senate Select Committee on 

Autism and Related Disorders Excellence in Employment

Awards. 

Now, I notice everyone because my attention has shifted from early intervention to life skills and independence. I think about how community, independence, pride in a job well done, and being a part of something are essential to every human's well being and safety. I pray the day of the "Mall Walkers" has ended. I think a lot about "Where will he work?", "Where will he fit in?", "Will there be anyplace he's welcomed everyday?" and "Will anybody care"?  and mostly  "Will he be part of a community where he matters, where he's not invisible"?  I imagine scenarios that are not so good. It was with these concerns in the fore front of my mind that I noticed our local grocery store. It is staffed with all kinds of people, including people with different disabilities, physical and developmental, all woven seamlessly into a team, proudly interacting with customers and simply doing their jobs. I felt a sense of pride in my local store and the future.  Maybe just maybe there will be a place for Nick. This one store, this one manager's decision to hire people with disabilities, gave me hope! When I talked to the manager I learned that not only was he employing a wide array of folks, but he was not doing so in connection with any state program, but entirely on his own, paying full wages for real jobs!!!!!!!!!!!!!

As a Task Force member of the California Senate Select Blue Ribbon Commission on Autism and Related Disorders, I had the opportunity to nominate businesses which had gone a step beyond in hiring individuals with developmental disabilities to be recognized by the Senate for their important efforts.  I couldn't wait to nominate our local Ralphs and to publicly thank the manager and his team. 

I was thrilled when they were chosen to be recognized. The store manager attended a celebratory recognition luncheon hosted by The Help Group and Dr. Barbara Firestore, accompanied by two very special store employees.  The manager talked about his amazing employees who were always on time, always excited to do their jobs, and willing to do tasks that bored most folks.  

Diploma Track and a Certificate; What’s the difference and why does it matter?

“Even if Nicky is the best reader or mathematician in his grade, it won’t matter if he can’t get safely across the street, and right now he cannot. That said, my priority is not Nicky graduating with a diploma.”  mom

Diploma Track and a Certificate; What’s the difference and why does it matter?

I overheard two conversations; first was a family upset because they didn’t know there was more than one "track" and another was a family who pulled their son off the Diploma track in 10^th grade when they learned the difference.  Seemed to me if people were this excited, it must be an important part of the conversation I needed to have before Nicky hit high school. I asked around, and here’s how it was explained to me. If anyone has any additional information..please email me or leave a comment.  The difference between certificate and a diploma when a student exits High School is:

Ø  Both a High School of Diploma and Certificate of Completion  allow students to participate in the high school graduation ceremony.

Ø  The Diploma track is the standard curriculum in general education. It has set courses (math, English, science, foreign language etc.) which all students are required to take.  

Ø  Graduation with Certificate is based upon the student opting out of the Diploma track for an “Alternative Curriculum”.  When a child in enrolled in “Alternative Curriculum”  the IEP team has flexibility to schedule  classes based on a student’s individual needs, which can include Community Based Instruction (CBI)

Ø  A Certificate of Completion – is not a document presented to get a job, or used to get into college.

Ø  Students on the diploma track will have a document to show potential employer’s colleges and universities that they completed the mandatory requirements of high school.

Ø  If a student is on the diploma track and pass’s (even with all D’s) Public school is no longer responsible for the students education beyond 12^th grade. As soon as you get your diploma you are exited from the public school (that’s why the prom and activities are before the diploma).  The public school districts are no longer your resource for education. 

Ø  From age 18 diploma track students exited from high school  will be rely on other state resources, department of rehab, regional center for educational/vocational supports.

Ø  Individuals with an IEP, enrolled in an alternative curriculum can stay in public school system until age 22 or until they receive a diploma, whichever comes first.

Ø  18 year old students walk with their peers for graduation, moving forward they go into a post -secondary program, utilizing school district resources/funds.

Ø  Public schools tend to have the best resources when post-secondary students will still get 7.5 hours of instruction.  (Unless you go to a workshop or day center)

Conclusion for this family: Nicky is not on the “Diploma” track. My priority is not Nicky graduating with a diploma. Even if Nicky is the best reader or mathematician in his grade, it won’t matter if he can’t get safely across the street, and right now he cannot. For us, opting for the alternative curriculum lets us focus on life skills directly related to his independence while he is in high school.  I would like him to have the choice to remain with our school district until age 22, so he can move into LAUSD’s post-secondary programs and access educational programs designed to move him toward independent while meeting his individual needs.  The best way for us to do this it to jump off the Diploma track and create a curriculum where the priorities in his education are classes/programs/activities that directly impact independence. 

"Behaviors" In Action, Nicky 1, Mom & Sister 1 - Part 3 Success, Video of a Dr. Visit

All my ABA training failed me in this moment (See hospital video 1 and 2) because Nicky just wasn't going to cooperate. Aften an hour of trying to connect his EEG, with the help of three nurses we failed when home. But it's not over here we are back again with supports in the form of Nicks big sister. Nicky was working us, first me and then his sister. But in the end, his sister and the nurses get it done, while Mom - who's comfort has become the ultimate reinforcer - stays out of the room.  It's funny to see how easy and fast the process goes once Nicky resigns himself. 

"Behaviors" In Action, Nicky 1, Mom 0 - Part 2 - Home & Back Again

We head home and nobody's happy. Nicky's frustrated, then sad. We get home, review the video and head out again. Here's what happens when we leave the hospital and head back once he's watched the video (video number 1) and talked about what happened.  It's a good peek and melt down and recovery.

My Girl Turns 18, The Best Surprise Party EVER!!!

WE SURPRISED YOU….& 

YOU SAID IT COULDN'T BE DONE!!  Gotcha!!!!!!!!!!

One of the best days EVER is how I rank Evyn's surprise birthday and graduation party!. What I wanted to do more than anything was to give Evyn a day that was ALL about Evyn. A day where she was the center of the universe, a day she would remember for a lifetime. A day where she didn’t have to share a second of the sunshine with her brother, a day where life was just about happiness, her happiness.  A day were everyone showed up JUST for her, a day to share with all the amazing people who make up the village that's brought us safely and successfully to this happy day. And maybe most of all a day where autism was not in the lead role….but just hanging way back like the understudy. We did it! Thanks to everyone :) 

Parents Surviving and Getting It - Changes, Transitions and our Kids

Nicky has been on the verge of a breakdown almost every minute of every hour for two weeks.  His frustration tolerance is really low. It's like if meltdown happens at level ten...he's been floating between level 5 and 8 all the time, so just one little thing and BAMB he's gone!  Not a fun time for any of us. But there's good news, I know that this too shall pass!!!! Time and experience is our friend because I've been here before. I can go down my check list...



Getting Sick...Probably not
Medication Reaction... Probably not
Change in Schedule...Yep
Anxiety... Yep

The school year is ending. He know's it's ending. His routine will stop, he won't see his teachers and when
he comes back to school in the fall. He doesn't know what teachers or kids will still be there. He's anxious. It happened last year and it's even stronger this year because he's more aware of his routine and the MANY ways it can change.

He know's he will go to summer school, but he doesn't know where and he doesn't know the kids.

The therapist who is with him three days a week at school, takes the summer off.

Last summer I promised we would go to the San Diego Zoo in July. He's been asking about it everyday since December and he's literally been counting down the days!. It's almost here and he's loaded with anxiety about making this long awaited trip.  PS: This was a great way to teach him how to measure time and keep tracks of the months.

So, I know this too shall pass. I know what it is, I know what he's feeling and that's the next best thing to not having the problem at all!

"It's coming" vs "It's here". The end of a chapter......

Countdown to my daugher's High School Graduation....

Morning will never be the same. Next week Evyn turn's 18 and she graduates from High School. Two MAJOR milestones in two days and I'm having a hard time really taking it all in. 

Yesterday as I got her up early to be at school by 6 am for a senior trip, it hit me that in 14 days this will not be mine to do. Don't get me wrong I've haven't glamorized our mornings; getting Evyn up and out the door on time every morning has been a source of battle in our home since 1st grade and I threatened to give up time and time again! Never thinking about how I would feel the day it would end.  

For 18 years my life has been waking up to take care of her, peeking in her room to make sure she's okay and seeing her as she started her day. Since she started pre-school about 3,510 hours of my life has evolved around waking her up; making sure she's dressed for school, has lunch, a clean face, breakfast and getting myself dressed and driving her to school.  

In two weeks this chapter will be over and I feel sad. 

News Alert: 10 Impressive Special College Programs

10 Impressive Special College Programs for Students With Autism

http://www.bestcollegesonline.com/blog/2011/05/25/10-impressive-special-college-programs-for-students-with-autism/  

Many autistic teens out there have the brains to make higher education a breeze, but are lacking in some of the social, time management and organizational skills they’ll need to make the grades they deserve. Luckily, there is a wide range ofcolleges out there stepping up to offer support and help for students with autism spectrum conditions. Here are 10 of the growing number of colleges that can be a good choice for students with autism, as they can provide support groups, assistance with courses, special classes and all the information students need to get a degree.

1. Drexel University Autism Support Program: Drexel has one of the most comprehensive autism support programs out there for college students today, aiming to create a more diverse experience that includes those with not only cultural differences, but neurological ones as well. Through the DASP, students can find peer mentor training, support from advisors, as well classes and programs to help them better adapt to life in college. Additionally, students can work to become advocates for the condition on campus and eventually pay their help forward by supporting successors.
2. Rutgers Developmental Disabilities Center: Autistic students at Rutgers are offered several options that can improve their college experience. From getting a single dorm with no roomies to accommodations that can help in the classroom, the school is taking a serious look at ways they can attract and assist students with autism spectrum disorders. Students can check out the Douglass Developmental Disabilities Center for additional help from other students, psychologists and other professionals, or enroll in the Asperger’s Disorder College Program – which provides goal development, meetings with team members, orientations to campus life and helpful guidance for socializing and studying.
3. Mercyhurst College AIM Program: Students at Mercyhurst who have an autism disorder never need to feel alone on campus. The school offers a program designed to help students with autism called the Asperger’s Initiative at Mercyhurst, offering support in the academic and social aspects of attending college alike. Students enrolled in the program will get group and individual help with building communication skills, researching and writing papers, developing social skills and other aspects of college with which many students struggle. The program is in its third year and still going strong, making Mercyhurst a strong contender for students who have an autism spectrum disorder.
4. Midwestern State University: With so many students being diagnosed with autism these days, this school thought it was wise to help them meet their college goals by creating a support program. Through it, students with a range of autism disorders can find help from counselors and peers. They may live in a special house on campus along with two peer mentors, where they will gain the skills they need to learn to live independently and become a successful college student. Additionally, they will receive help from staff members with any problems they may face in adjusting to their new life. While the program is doing well, it still needs additionally financing to help it continue through 2012.
5. St. Joseph’s University Kinney Center for Autism Education and Support:While not as comprehensive as some of the other autism programs, students at St. Joseph’s will still find some great resources through the Kinney Center that make getting a higher education a little less daunting. The Center not only reaches out to the larger community to promote autism advocacy, but also helps students with learning more about the disorders and how to live on campus. Additionally, they organize events and courses that can be of great interest to those with autism and can help individuals get out and make new friends.
6. Boston University Supported Education Services: Free to anyone attending BU, this program offers individualized assistance with building academic skills and supporting students with autism disorders during their time in college. It can be a great way for them to get help in adapting to college life and finding the motivation to seek out social interactions. Additionally, BU is a great place to follow the latest research being done on autism today, and students in the life sciences may even be able to take part in making discoveries that could change how the medical field sees the spectrum.
7. University of Alabama College Transition and Support Program: Through this college program, students will get help improving their study skills and other academics while also learning about what will help them better interact with peers, teachers and others on campus. Founded in 2006, the program works with a few students each year, providing them with support from faculty, clinical psychologists and graduate students. The creators hope it will help students gain the skills they’ll need to not only succeed in college, but live as an independent adult and work in their chosen career field as well.
8. Autism Collaborative Center at Eastern Michigan University: This autism support program is one of the most comprehensive, but also one of the most expensive — sometimes running parents up to $8,500 per semester. Yet it provides support in every aspect of college life and will help students to steadily improve both academically and in socially throughout their time in school. Help from the ACC can range from nutrition therapy to academic support, and students will not only be able to interact with staff, but also a large number of autistic students from the college and the surrounding community.
9. University of Connecticut SEAD Program: The goal of this program is to help students and their families make the transition to college a smooth one, assisting the former in learning more about their disability and how to function as an independent adult. It is open to any student accepted to the university with an autism spectrum disorder and is available at varying levels of intensity. Participants reveive access to support from staff, weekly meetings and a range of materials that can make the college experience a whole lot less intimidating.
10. Marshall University Autism Training Center: Students who choose to attend Marshall will have access to its Autism Training Center. This organization offers a number of programs that can help college students learn to better manage their classroom assignments, make new friends and learn to live independently. They’ll also receive support from advisors on a daily or weekly basis, meet with professors and get help finding social activities on campus. Parents and students should be aware, however, that this support doesn’t come cheaply and can run as much as $3,200 a semester– a price that many are willing to pay to get the help and guidance they need.