Individualized Education Program

Schools Must Pay For Special Education Evaluations

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As a parent of who has had my share of battles with my school district’s Dept. of Special Education, I have come away with 3 take-home messages that I take with me every time an IEP meeting comes up:

1. The director of a Special Education Dept. is the person who has the least amount of knowledge of how my son thinks, acts, and is capable of achieving.  

2. Whenever possible and if left without opposition, school districts tend to follow the course that causes them to spend the least amount of money to properly educate my child.  

3. I am ultimately responsible for understanding my child’s IEP including the methods used by the district/teachers, and the state and federal laws that govern a child’s right to FAPE.  

So what does this mean? It means not only do I have to know my child, I have to know what the teachers are doing (right or wrong), I have to know what resources are currently available to me as a parent, what my child is legally entitled to under the law and finally, what options above and beyond the school’s purview are better for my child.  I need to know the whole ball of wax.  

To make a long story short, shortly after my son entered in-district Kindergarten from an ABA-based Pre-K, we knew the district’s methodology (TEACHH) was not a good fit for him.  Moreover, the district did not have a formal plan or experience teaching autistic children.  For many years, Mike wound up stuck in a system that not only undid all that he learned previously, but tried to teach him in an ineffective manner; behaviors naturally escalated.  We had to fight for formal BC/BA evaluations and were subjected to off-the-cuff comments suggesting psychiatric disorders as the underlying cause of behavioral outbursts.  We had to fight for, and sometimes provide, TouchMath books that helped him immensely.  We had to fight for a 1:1 aide during school.  It took years to get a psychologist trained in ASD to coordinate an educational plan and related services.  When we decided that Mike would thrive in an out-of-district placement that was ABA-based, we needed to bring an attorney to our CSE meeting to show how committed we were to that goal.  When the time came for his triennial evaluations, they were incomplete; the district still tried to make recommendations based on them, but we saw this as that avenue to have Mike assessed properly by properly trained clinicians.  When the district relented, and approved an evaluation by the Hofstra University Diagnostic and Research Institute for Autism Spectrum Disorders, those clinicians eventually found in Mike was what we, as his parents always knew: that he had an intelligence that needed to be harnessed and focused in an appropriate setting.  

The rest, as they say, is history.  Sometimes you have to be a real pain in the ass, but it is sooo worth it.-Ed


School districts should reimburse parents for independent educational evaluations of students with disabilities, at least in some cases, a federal court is affirming.

Though the U.S. Department of Education has long indicated that parents have the right to an independent opinion at public expense under certain circumstance, the Jefferson County Board of Education in Alabama challenged the rule. The school district declined to reimburse parents named in court papers as Philip and Angie C. after they sought an outside evaluation when they disagreed with the district’s assessment of their child, A.C.

The Jefferson County Schools argued that paying for parent-solicited evaluations goes beyond the scope of the Individuals with Disabilities Education Act because the long-standing federal law does not specifically mandate it.

But last week a three-judge panel of the U.S. Court of Appeals for the 11th Circuit found “no merit” to the school district’s argument.

“The regulation at issue here is valid so long as public financing of a parent’s IEE is consistent with the intent of Congress in enacting the IDEA,” the judges wrote in their opinion.

The court ruling notes that federal lawmakers have reauthorized the IDEA numerous times without taking away the right to a taxpayer-financed independent evaluation, which the Education Department implemented in the early days of the IDEA.


School District Tries To Switch IEPs For Girl With Angelmans Syndrome

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Mom Says School District Changes Autistic Daughter’s IEP, Balks At Letting Service Dog Come To School

The mother of a child on the autism spectrum wants you to read this story and ask yourself why did her daughter’s school district make the changes it did.

This is the story of five year old Devyn and her service dog Hannah. Devyn has “Angelmans Syndrome” — a combination of autism and epilepsy.

Hannah rarely leaves Devyn’s side. She can alert Devyn’s mom if Devyn is about to have a seizure and just by licking her face, Hannah can interrupt the seizure and help Devyn to start breathing again. 

The handle on her harness helps Devyn walk around independently.

So Devyn needs Hannah, especially at school. But just weeks before Devyn goes into kindergarten in the Gates Chili School District there are problems. For a while, the district said the dog couldn’t come. Now they say Hannah can come to school and Devyn can get her one-on-one aid. But the district refuses to train the aid on how to handle the dog.

Devyn’s mom can’t understand it and she wants you to know about it.

“It would help me to have the community understand where we’re at right now and maybe get their support to put a little pressure on the school as to why they’re not communicating with me because there’s been a break down somewhere and I can’t really figure out why we are where we are right now,” Heather Pereira, Devyn’s mother said.

Here’s where the breakdown started

In March, Devyn had an individualized education plan, or IEP. It said Devyn would get a one-on -one aid and a service dog. (See picture above)


But in June, the same IEP made no mention of the dog or the fact that three doctors prescribed it for Devyn. (See the picture above)

So how does that happen?

Heather says she got a notice from the district in the spring asking her to sign a form to correct the IEP. If she signed it they wouldn’t have to have a meeting. She had done it before, so she signed it this time.

But, Heather says the the district told her they were only correcting “clerical errors.” There was nothing about the dog. But when she gets the revised IEP in June, all reference to the dog was gone.

The Gates-Chili School District Statement

“The District has never denied a properly documented accommodation for any student, including a service dog. Furthermore, the District has never unilaterally changed an Individual Education Plan (IEP) for any child.”

Girl Scout Wins Gold Award for Pamphlet on Autism

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Girl Scout wins Gold Award for pamphlet on autism
Photo by Travis Pratt
Caitlyn Miller recently wrote a pamphlet titled “The Autism Puzzle: Finding the Key to the Missing Pieces” for a Girl Scouts project she started last summer and won the Girl Scout Gold Award for her efforts.
DETAILSTo obtain one of Caitlyn Miller’s brochures, contact her at themissingpieces@yahoo .com.

Caitlyn Miller was diagnosed with autism when she was in middle school.She had been having a hard time with her schoolwork. Her grades dropped from excellent to middling, and she had a difficult time organizing for class or interacting with her peers. She often could not make eye contact.

She would cry or close herself off from the outside world, and not say a word to anyone. Herteachers and principal thought she was being difficult.

“It was just frustrating,” she said.

Then a school psychologist, John Rolph, diagnosed her with a form of high-functioning autism known as pervasive developmental disorder — not otherwise specified, she said.

She started taking medication and supplemented her regular classes at Middletown Middle School with an Individualized Education Program that augmented her organizational and social skills.

Everything started to improve over time, said Caitlyn, who is now 16. Her grades have picked up, she no longer needs her medicine and social interactions are not a problem.

“I probably could have been diagnosed earlier,” she said. “Maybe my middle-school years wouldn’t have been so disgustingly awful.”

Caitlyn is now publishing 1,000 copies of a pamphlet on autism she plans to hand out in the school system, at doctor’s offices and anyone else that wants a copy.

She wrote the pamphlet, “The Autism Puzzle: Finding the Key to the Missing Pieces,” for a Girl Scout project she started last summer. She earned the Girl Scout Gold Award for her efforts.

The pamphlet is not a technical document, but more of a firsthand telling of what it is like to live with the disorder.

People with autism, for instance, have a tough time recognizing and understanding social cues such as facial expressions, vocal intonations and hand gestures, she wrote.

“They live in a more literal world than figurative one, making it difficult for them to understand the social meanings and intentions of others.”

Avoiding probing questions or statements can add to confusion and emotional distress, as can surprises, she wrote. When a meltdown occurs, it is better to leave an autistic person to calm down.

Writing is one of her gifts, Caitlyn said, and she particularly enjoys creating science-fiction stories.

When she becomes an adult, she would like to join the Navy and become an officer, she said.

“I’m American, and I want to help protect my country.”

The Value of Socialization Services for Kids on the Spectrum

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Those of you who read this blog know how much of an influence my son’s socialization group Helping Hands Behavioral Outreach has had on his development.  When we first learned about HHBO, I was typically skeptical of how much help it could provide to my Autistic child.   It became relatively clear however, that the idea of modeling behavior to improve social (and eventually academic) interactions were key to his overall improvement.  Not only did it help Mike interact directly with adults and other children in his group, it helped him in ‘social’ situations: cooking, playing and sharing his art.  I firmly believe that the development of social skill will be the foundation for everythink my son accomplishes; these skills will help him become more independent, help him to seek help when necessary and eventually establish friendships.   This story on Ohio’s IDEA House is just another example of dedicated professionals shaping the lives of children on the Spectrum.

IDEA House builds kids’ social skills

The alternate education option IDEA House exists to fill the social needs of struggling students in a way no other organization is doing. After only one year, the center has seen a huge response.

IDEA House works to close the gap in the school system for children with disabilities, particularly kids on all ends of the autism spectrum. The service center fills the social needs of children in a way no other organization is doing.

Considered a child’s home away from home, the year-old service center in Stark County has been growing rapidly. Founded by Angela Shumate, IDEA House offers help in ways no other local organization can. The professionals at the center give IEP support, serving as a parent advocate, offer after-school tutoring, help with homework and Friday night game nights.

IDEA House is an alternate education choice for parents who feel their child needs more one-one-one treatment than a public school can offer.

“We really strive to work with the whole family, offering support to parents and siblings. We connect parents so that if nothing else goes right that day, they can talk to another parent who’s been there to create that support system,” explained Shumate.

She’s realized many parents aren’t even aware of some of the resources available to their children. For example, if your child has been diagnosed with any form of autism, you can apply for an Autism Scholarship Grant of $20,000 a year. The money would go toward an alternate education for your son or daughter from ages 3-21.

“We are the only service provider in the area that doesn’t cost parents above and beyond that $20,000,” said Shumate. “The State doesn’t turn down any child diagnosed with any for of autism on the spectrum, including Asperger’s syndrome. They just need to have an IEP in their school district to qualify.”

While IDEA House can’t provide transportation for parents, they do provide a learning experience that heavily focuses on the social skills of those with disabilities.

“When we do our weekly game nights, it’s set it up so that when there’s awkward situations, we can stop them and teach them,” explained Shumate. “It stinks to see the kids uncomfortable and learn a tough lesson, but we’re there to do it in a very loving, supportive way.”

Adding to the great news, Shumate said they have “really exploded in a big way.” On May 1 the organization will be moving into a “big, beautiful home” on Cleveland Avenue. The blessing brings a natural learning environment with a home setting.

“The kids will do life skills, like set the table for lunch, prepare their own food, wash dishes,” explained Shumate. “They’ll also have ‘down time’ to watch TV, just as they would be at home. We are here to teach kids how to have an independent, successful life after school. I have no doubt many of our kids will go on to college. There’s no program out there going to this extent.”

IDEA House will host an open house on May 12 where parents can ask questions and get to know the staff. And there are still 5 openings for next year via the scholarship program. Of course, there’s an unlimited amount of tutor sessions available weekly. Most sessions last one hour.

“I’m not sure where my passion came from,” said Shumate. “I always see the hidden gem where someone else doesn’t. For me, it’s about realizing the potential in people.”

On the Web:

To learn more about IDEA House:

To learn more about Ohio’s Autism Scholarship program and grant:

Adapting to Autism: A Family Affair

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The grandparents

“I’m very lucky for the family that I have,” said Susan Belmore of Fall River, whose son, Luke, 10, was diagnosed with autism two months before his third birthday. “Both sides. They all jumped right in.”

Belmore said that especially in the early days, it was difficult to get Luke to sit for long periods of time and going to family functions took a lot of effort. “Nobody ever complained. They’d all say, ‘There’s nothing he can break that’s not fixable.’”

Belmore says she gets lots of help from family members: Her sister is always Googling information about autism, her 20-year-old niece often babysits the kids, her sister-in-law purchased special learning videos for Luke and her aunt is always willing to pitch in where she can.

Eager to keep her family life as “normal” as possible, Belmore didn’t shy away from taking Luke on outings to the zoo or corn mazes or Laser Gate. “Sometimes it took us longer [to get there] than other families,” explained Belmore. “I wouldn’t go without backup. I had three kids — I needed help!”
Her mother was always ready to provide that backup. Beatrice Martins and her husband, Joe, a Fall River School Committee member, wanted to learn as much as they could about autism. They took a class called “More than Words” to learn how to help their grandson communicate, and each year they participate in a grandparents brunch hosted by Community Autism Resources.

“We are in a position to share what we’ve learned with the group,” said Beatrice Martins. “It’s wonderful to be able to let people know it gets better.” The couple learned to communicate with Luke using pictures, they adapted to helping him follow visual schedules and they learned to keep an extra close eye on him because, like many autistic children, Luke sometimes wanders away, oblivious to danger.

“It really has raised our awareness of what people are going through,” she added. “That’s what this is about — reaching out and helping people.”
Beatrice Martins also accompanies her daughter every year to an autism symposium in Providence. “We’ve learned so much,” she said.

A former educator herself, Beatrice Martins attends Luke’s Individualized Education Program meetings, and from the beginning advised her daughter to keep the atmosphere as friendly and non-adversarial as possible. “You quickly look and learn,” she said of the process, which determines what class Luke attends, what therapies he receives and what lessons he will learn. “My daughter’s role has grown over the years. It’s so interesting to see how you blossom and grow. I’m so proud of my daughter and son-in-law.”

When it comes to his grandson, Joe Martins insisted, “We always try to involve him — he’s included in anything [we do].” For Luke’s recent birthday, his grandparents enjoyed taking him to dinner at the Olive Garden and then to a movie.

Joe Martins admitted he’s very protective of Luke, though. During one visit to the Buttonwood Zoo, Luke witnessed a man stepping over the line while waiting for the train. Since autistic children are often sticklers for rules, Luke kept trying to pull the man back over the line where he belonged, and his grandfather worried that the man was getting irritated. “When I tell them that he’s an autistic little boy, they usually back off,” Joe Martins said.

And of course, his grandson’s diagnosis has given the former superintendent director of Diman Regional Vocational Technical High School an even deeper understanding of special education. “When people ask ‘How come it costs $16, $17, $18,000 to educate [special ed students] and my kid only gets $12,000 [the average cost to educate a regular ed student]’ I say thank the good Lord your child only requires $12,000,” Joe Martins said, noting that he does not get involved in his grandson’s IEP meetings. “I get a lot of people calling me for help on a variety of issues, and special education is one of them. I will help anyone who comes to me. I don’t solve their problems — I don’t have the authority to — but I will tell them what to do, step by step.”

The siblings
Joe Martins is also proud of the relationship his grandchildren have with their brother Luke. He said Luke’s sister Katelyn is more nurturing, while his older brother CJ is more competitive — all very common in any sibling relationship. And he says his older grandchildren make him proud as well. “The cousins all realize Luke is different. They will be protective,” he said.

When her older daughter started dating, Lisa Smith Watt, of Taunton, would always say with each new guy, “I hope he realizes he will someday have responsibility for your brother.

“We put a lot of stress on the other children,” admitted Smith Watt, mother of an autistic son, Nick, age 12. “She says now, ‘Mom you used to freak me out. Nick was a lot of work. I wasn’t sure I could handle him.’”

Smith Watt said, too, that with all the therapists coming in and out of the house, the countless doctors’ visits and more, sometimes the siblings can feel lost in the shuffle.

Sarah Aguiar, 14, of Swansea says she doesn’t mind seeing so much attention given to her two younger sisters, both of whom are on the autism spectrum. For instance, the little girls have an iPod Touch and an iPad, both a teenager’s dream devices. “It doesn’t upset me. If they need it they need it,” said Aguiar.

She lets her little sisters rearrange the pictures in her room — a recent remodel didn’t go over too well with Sophia, age 7, who like many autistic children doesn’t like change. And Aguiar admitted that the iPad and iPod have helped her sister gain language. “I love how she says my name more now. It’s worth it.”

In fact, Aguiar recently gave a speech in English class about autism, hoping to raise some awareness herself. “A lot of kids are mean to people that have [a disability],” she said. “It really frustrates me.”

The significant other
Enjoying a date with her husband, Bill, would be tricky for Susan Belmore if not for family, she said, because she only feels comfortable leaving Luke with people who know him well and who know how to communicate with him or deal with the occasional meltdown.

And Lisa Watt Smith, who split from Nick’s father, points to a divorce rate among parents of autistic children of 80 percent. She freely admits that, at least when Nick was first diagnosed, she was so immersed in his care — she even had two phone lines to accommodate all the calls she had to make to doctors and insurance companies and therapists — that the marriage took a backseat.

She said now, however, her boyfriend Paul and her son get along famously. “When you start dating you almost feel bad because your significant other may not really understand the disorder at first … that dream of us retired and swinging on a swing under the apple tree? That swing will have to be big and have plenty of reinforcement because Nick will be on it with us,” she said. “Paul says he thought about all that but it was a 20-second conversation with himself. He says, ‘You were so worth it. You were both worth it.’”

When a child is diagnosed with autism, the entire family must learn to adapt | The Autism News.

A Child With Autism, And A First Job

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A Child With Autism, And A First Job

I went to the supermarket the other day and on my way out to my car I saw a young employee walking eagerly towards a stray shopping cart. He caught my attention because his stride was a little too coltish; his smile was a little too giddy. He was “one of ours,” as my husband Ned likes to say with fondness when we spot someone who’s probably autistic — like our son, Nat.

My son Nat is severely autistic, and even though he is 22, I still get a little frisson of pride mixed with fear when I am out with him. Fear because of all the times over the years that he has erupted in public, angry and scary, over something I couldn’t control — like being in the “wrong” supermarket (he did not believe that the boutique-ish Whole Foods was a real supermarket). And of course I feel proud, too, when we’re out together because first of all he is a truly happy soul, with a goofy gigantic smile. But more important, any time we are out and it goes well I feel triumphant. How many moms feel gleeful and victorious after a trip to Starbucks with their 22-year-old sons? But if Nat has asked for his brownie on his own and been understood by the barrista, score ten points for us.

So anytime I notice someone like him out in the world, I get all soft and squishy — another of my husband’s phrases. Especially if I see one of ours working somewhere. I think this goes way back to that terrible meeting at his school where I realized the team was gently coaxing us away from academic goals for Nat. The conversation around the IEP table was full of ugly gray words like “pragmatics,” “training,” and “voc.”

But over time I adjusted to this, and eventually I took it and ran with it. Nat getting a job became as much a fixation for me as getting into college. The draconian realities of his challenges made us let go of one life for him, but I sure as hell was not budging when it came to his working. I wanted him to make his mark on the world anyway. I wanted everyone to see Nat as a real person and not some guy with a disability.

Not that he slid right into it, but he did seem to take to a job a lot easier than to school work. They started him on Meals on Wheels, to get him accustomed to the concept of going to work. As soon as he had it down – riding in the van, picking up the meals, bringing them into the person’s home – he was like lightning. When a task makes sense to him, and creates order in the universe, he is the best worker around. Very few people can keep track of order and routines like Nat can. So there are certain jobs that are perfect for him. Eventually the school got him a job at a Papa Gino’s pizza restaurant, assembling boxes. He learned his job so quickly that the problem became basically how to get him to stop making boxes long enough to clear a place for himself at his table. His supervisor would look in on him and find him surrounded by towers of cardboard. The restaurant offered him a second job of delivering coupons in the neighborhoods nearby, and this was his best gig yet. Nat has always been a perpetual motion machine, with long legs to match. Even as an infant he had pushed himself up from my lap on his tiny fat baby legs. Walking around a neighborhood with one defined task was a dream job for Nat.

Recently I heard that his Day Program was helping him apply for a job at a supermarket, putting away shopping carts. But, they told me, he’d have to have a job interview and pass a psychological test. There’d be a criminal background check, and a two-week trial period. “This is not playtime,” the director of his Day Program told me. “This is a serious job.”

So when I saw the guy like Nat putting carts away, I just had to see what he was like, and how he did the job. What were the pitfalls, what sorts of things did someone like Nat have to watch out for? I decided to test this employee, a small, subtle test. I just wanted to see what would happen if I pushed the cart over to him but then veered off to return it myself, something a little out of the ordinary.

Nothing happened, of course. He noticed me out of the corner of his eye and just let me put my cart away. He knew his job, and the store had trained him carefully. I felt really stupid on a number of levels. What was I thinking? That because this young man had a similar diagnosis to Nat, that I could interchange them? Of course not; he has a whole life too, just like Nat, and perhaps a mother who wants him to make his mark as well!

I see that I have to be careful not to take “one of ours” too far, into patronizing and trivializing. But it’s tough to remember, as Nat’s program director said, that this is serious, and real, even though that is exactly what I want for him. Nat is not a typical 22 year old, able to tell me to back off and give him space. I have to remember that just because he is adorable and seems young, he is absolutely an adult who loves his work.

So I guess this means I should not start shopping at his supermarket…