Do Alternative High School Curriculum's Improve Outcomes?

Watch Nick sing with the general education choir, and you tell me?

Everytime I push the envelope working to get more for Nick, I pray for more than a paper cut! Recently it's been all about not letting him graduate a social functional illiterate; which meant getting the district to work with me to build an alternative curriculum. They agreed and we built a schedule which got him out of the classroom and in settings where he could work on generalizing and using the skills he has already learned. 

One of his classes on our alternative curriculum is Choir, this year was his second year. Year one, he became aware of more songs and now listens to a greater body of music. When it came to the school performance last year, he was happy to go and get on stage, but he didn't sing he just swayed happily!. Which I was thrilled about. 

This year he got up on stage, still swayed and sang every word. He worked hard, and he delivered with all typical peers! So proud. 

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

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

Nick going to sing in the choir
Holiday program! 

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

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

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

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

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

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

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

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

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

autism spectrum turn 18 every year.


A Life Long Developmental Challenge

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

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

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

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

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

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

specific needs.

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

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

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

No Pathway to Work

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

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

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

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

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

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

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

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

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

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

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

ASD to have been employed since high school.

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! 

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? 

Ten Things NOT To Do In An IEP Meeting!!

My Top 10 IEP "No No's"

I don't know about all of you, but Nick's  first IEP, was also my first IEP and I made mistakes. Since then I've made more, and I've heard about the most common ones other parents make. Here's ten "Not to do's" to help you on your journey.  

1.  Believing the professionals are the only experts.

Although most parents do not have a background or degree in education, but that's not what makes them an expert when it comes to their child. we are the best experts for our kids. We know our children better than anyone. That's the position we have to take and that's the role we have to prepare ourselves to play. It's the knowledge and experience regarding their child not a credential or degree. Parents are experts in their own right; they also provide historical information and the big picture from year to year. They know what works and does not work with their child and can be a great asset to the IEP team.  http://autismdaybyday.blogspot.com/2011/03/real-autism-experts.html

2.  Not keeping records and making requests in writing.

Just the "Facts" Mam! -  Parents should never underestimate the importance of records.  Communicate in writing send all requests in writing and keep a record of everything! Before Nicky was 3 my records had already been used to get Nicky the proper medical care, diagnosis and successfully challenge the school district to obtain the best school placement for him. "Facts not Feelings" - no matter how right we might be, just saying so is not enough. Proof - not just our conviction - in the form of records of events, outside evaluations, logs of daily activities are our ammunition to fight for our kids. These are the tools of the expert parent. It wasn’t always easy but it’s how I got done what needed to be done.  http://autismdaybyday.blogspot.com/2008/01/records-will-save-you.html

3.  Not being familiar with Prior Notice of the Procedural Safeguards (34 CFR 300.503)

All sections of the Procedural Safeguards are important to parents. This particular section gives parents some leverage during the IEP meetings. Whenever parents make a request for their child in the IEP meeting, the IEP committee is required under Prior Notice to provide the parents with written notice with a reasonable period of time. The notice must include the following:

• A description of the action proposed or refused.
• An explanation of why the agency proposes or refuses to take the action;
• A description of any other options that the agency considered and the reasons why those options were rejected.;
• A description of each evaluation procedure, test, record, or report the agency used as a basis for the proposed or refused action;
• A description of any other factor that is relevant to the agency’s proposal or refusal.

We have found many instances where a parent requests an assessment or service only to have the IEP team tell the parent it cannot be done. By making all requests in writing and by requiring the IEP team to provide Prior Notice, the parents make the team accountable for its decisions. This practice also takes issues out the emotional areas, allowing all team members to focus on IDEA standards.

4.  Requesting a related service instead of an assessment that supports the need for a related service.

It's like everywhere in life, it's not what we think, but what we can prove. That's really not unfair and it helps other team members know we can be trusted and taken seriously when advocating for our child. Many times parents will request services such as speech, occupational therapy, physical therapy, etc. in the IEP meeting, with our support for the need. When the team does not agree on providing a service, go to the next step, request as assessment that supports the need for the related service. Instead of requesting speech for your child request a speech assessment. 

5.  Accepting assessment results that do not recommend the services you think your child needs.

We've all read assessments that just didn't accurately describe our child and/or the right prescription of services. Under 34 CFR 300.352. Independent Educational Evaluation (IEE), parents of a child with a disability have the right to obtain an independent evaluation at public expense if they disagree with the results of the school’s assessment. When the parent requests the IEE (in writing) the school has one of two choices: they may either provide the IEE in a reasonable period of time or they may take the parents to a due process hearing. When an IEE is agreed upon, parent and school must come to an agreement as to who is qualified to assess the student. The examiner for an IEE cannot be employed by the school district . Parents should request the school district’s policy on guidelines and qualification for their examiners.

6.  Allowing the assessment information to be presented for the first time at the IEP meeting.

Parents are entitled to have the assessment information explained to them before the IEP meeting. we encourage parents to have the person who administered the assessment give them a copy of the report and meet with them to explain the report several days before the IEP meeting. This enables the parents to think through the information before making decisions for their child. If all IEP decisions are based on the information from the assessment, it only makes sense for the parents to be knowledgeable and informed about the assessment results in a way they can understand.

7.   Accepting goals and objectives that are not  measurable.

The longest time spent in an IEP should be on the meat of the matter, measurable goals and objectives. This is where we are saying, here's when my child is today and here's where we want him to be next year, and here's out detailed plan on how we are going to get their and measure our progress. THIS is the big stuff, but this is one more place where all IEP teams are not created equal. In school speak these steps are: The student’s present level of performance (PLOP) and states what  the student is currently able to do. The committee then develops the IEP goals and objectives. The goals state what the student is expected to accomplish by the end of the year in ways that anyone can measure how the outcome. Objectives break the goals down into increments. For example for an IEP held in January 15:

• PLOP

Based on the standardized testing and classroom work, your child is currently able to read on a 7th grade level with 70% mastery.

• Goals

By the end of the school year your child will be able to read on a 7th grade level as measured by standardized testing and classroom work with 90% mastery.

• Objectives

By June 15, your child will be able to read on 7th grade level at 80% accuracy with teacher assistance as measured by our standardized tests and classroom work .

By By December 15, your child will be able to read on 7th grade level at 90% accuracy with teacher assistance as measured by our standardized tests and classroom work .

Now that you've written them, stand back and ask yourself, do I really understand this? Can I see my child achieving this? Do I understand what the goal is? Would anyone reading this, who was not in the IEP, understand it a year from now? 

8. Allowing placement decisions to be made before IEP goals and objectives are written.

A successful placement needs the input of all the team members and it should be based on PLOP, Goal and Objectives. Many times after assessment is discussed, the IEP committee will determine the child’s placement. Goals and objectives are always written before placement is discussed. To ensure that the child is placed in the Least Restrictive Environment (LRE), the IEP committee must determine: Which of these goals and objectives can best be met in the general classroom?

With any remaining goals and objectives that cannot be met in the general class-room,  the committee determines: Which of these goals and objectives can be best met in the general classroom with modifications and support?

This line of inquiry continues until all placement options have been decided upon for all the goals and objectives. The committee must always start with the LRE and then work toward a more restrictive environment only as necessary. IDEA is very clear that the IEP committee must always consider the general education classroom as the first option for students with disabilities.

9. Allowing your child’s IEP meeting to be  rushed, or ending the IEP before you understand.

Rushed IEP meetings is a practice particularly common at the end of the school year when educators are frantically trying to have IEP meetings for all the students who receive special education services. IEP meetings may be held one right after another. If this is the case, or you just ran out of time do not be intimidated, ask to schedule a time to continue the IEP.  It is important that all issues are adequately addressed before closing out an IEP and signing off. Never let feeling rushed,   keep you from requesting that the IEP team meet again at a more convenient time to further discuss your child’s education.

10. Not asking every question you can think of that relates to you child.

It is very important to ask questions and lots of them. The process, that educators just seem to breeze through, is complicated to master. I spend weeks in advance of my first IEP just trying to learn the acronyms specific to special education, so I could at least try and follow what was happening!  All the terms can make the IEP process confusing and frustrating causing the most  brilliant parent to feel pushed out of the conversation before it begins. Here's the truth, we are not expected to know all the terms and acronyms, but we are expected to ask, so ASK!

 

IEP Parent Rights - Answers to 12 Most Frequently Asked IEP Questions

1. Parents do not have to sign an IEP at the end of an IEP meeting if they disagree with the IEP. 
2. Parents can sign an IEP with exception, for example “I am signing this IEP but I disagree with the teams decision to reduce my child’s hours for speech and I am at this time filing a request for due process”.
3. Parents who need a language interpreter to thoroughly understand everything being said/read in the IEP, can request an interpreter (which you need to do in advance of the IEP and I recommend you do so in writing). Parents will then be provided with an interpreter for the IEP at no cost to you.
4. Parents have the right to request that their child be assessed for Special Education without delay. 
5. Parents have the right to list all of their concerns in the IEP. 
6. Parents have the right to file complaints, including state complaints and due process complaints, and disagree with parts or all of the IEP.
7. Parents have the right to ask for an Independent Educational Evaluation at public expense when they disagree with the school district’s assessments. 
8. Parents have a right to request a new IEP meeting be held within 30 days of a written request when an IEP is already in place. 
9. Parents have the right to participate in the IEP meeting and have their opinions heard and noted. 
10. Parents have the right to bring any person to an IEP meeting with knowledge of the child or the child’s disability including social workers, case workers, family members, advocates and attorneys. 
11. Parents have the right to review and receive copies of their child’s educational records. 
12. Parents have the right to consent, refuse to consent or revoke consent for special education for their child. 

Why are Parents Afraid of the "IEP"

I was going over papers, talking to the school nurse and Nick's teacher in preparation for my son's Tri-annual IEP last week, when I was asked "You seem anxious, what's an IEP?"  I'm so used to being anxious I didn't notice, but she was right. Before I knew it I was telling her this story.  

IEP stands for Individual Education Plan and it strikes fear in the hearts of many parents. The terms Tri-annual IEP and Transition IEP can be even more anxiety provoking because experts - which can include people you and your child have never met - evaluate your child  to provide critical information that is used to determine services. IEP's are created in meetings where a students educational team and parents come together to review a students individualized educational needs to determine what has worked, what's not working and what would be best moving forward. It sounds good and sometimes it does goes well. Sometimes the entire team agrees on a plan of class's, transportation, supports and services to move a student forward.

"Why are parents anxious about IEP's; in short how would you feel knowing that the success of a critical part of your life or your child's was going to be decided by a committee, which may include strangers, on an annual basis? Hummm, I'm just sayin :)."

Parents are afraid of IEP meeting because they offer up a frightening annual opportunity to learn how many different opinions a group of adults can  have about what best serves a child.  All the education support services a student will keep, gain and loose in the next school year are at the mercy of the the IEP participants, who may or may not know anything about your child. From diagnosis (which determines eligibility for services), school placement, educational goals, classroom placement, behavior plants, behavior support, speech, OT, APT, behavior plans, transportation, are all of the table for renegotiation once a year! Not hard to see why parents feel a little anxiety around the process!

IEP's always have an element of the unknown, as different agendas, levels of knowledge, belief systems come into play and in the event of a disagreement the school districts typically have more resources to gain the upper hand in a dispute. Visions of David and Golliath have been known to come to mind for many a parent. For example; two weeks before one of Nicky's IEPs, an aid told me "People have visited his class from the district and one told me they were trying to see if Nicky no longer needed a behaviorist because he had good grades". Yikes, there went any calm I was holding on to!!! Really, good grades??. If this statement was accurate or not - which I will never know - it is an example of what happens in schools and our communities when people, even teachers and principles, have deep misconceptions about autism. There is still a great deal of confusion about behavior and intelligence in people diagnosed with ASD. For example some people think a person with autism who has normal intelligence can rely on their intellect to turn off and on any inappropriate behaviors they have associated with their diagnosis, or that autism does not mean unable to learn. Or in this case,  when behaviors improve due to intervention, and the success of behavior intervention is not necessarily proof that the support is no longer needed, rather it's probably proof that is is needed and working!

Transition to Adulthood: Guidelines for Individuals with ASD

This is from Ohio, so it may not be identical for your state, but the concepts are on target no matter where you live. It's written like an official document including narrative most parents raising a teenager or young adult already know, HOWEVER is you can get past what you know there's important information for all of us and it's a great tool to share with folks "who don't know". That said, I thought it was worth the share and spreading around J

A great supplement to the Preparing Individuals for Employment Module: Transition to Adulthood Guidelines for Individuals with ASD web-based booklets.  The current OCALI Transition to Adulthood Guidelines for Individuals with ASD has been revised and formatted into a series of free web–based booklets. Each booklet focuses on one aspect of the transition from school to adult life. Four booklets are now available on the OCALI website:

·      IEP Components of the Transition Process
·      Considerations for School Programming
·      Age-Appropriate Transition Assessment
·      Employment
Each booklet offers information about the subject area, implications for individuals with ASD, examples, and resources. Many direct links to more in-depth information are available in each booklet. While these guidelines discuss issues surrounding ASD and transition, much of the information is appropriate for any transition-age youth served through the IEP process. 

Transition to Adulthood Guidelines

"Transition to adulthood" is a complex and ongoing process that starts as soon as a child is born and continues as the child becomes an adolescent,  to early adult life and then through the stages of adulthood.  While this process is complicated at best for any person, the individual with an autism spectrum disorder (ASD) faces unique challenges that require specialized considerations. This set of guides will help the user understand these challenges and raise awareness of these important considerations

A critical time for transition planning is in the early years of middle school through the first few years following graduation from high school. This time period is the focal point of the Transition to Adulthood guides and will assist the individual with ASD and his or her team in reviewing the issues of adulthood related to employment, postsecondary education and adult living during these years. Implications for the individual with ASD to consider are highlighted throughout. Identification of  resources and many active links to important information are provided. Use this set of guides as a reference and resource and to help frame a way to think about the issues related to adulthood.

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Age-Appropriate Transition Assessment

In this volume, Age-Appropriate Transition Assessment, the user will take a close look at the intention of Age-Appropriate Transition Assessment (AATA) and the implications to students with autism spectrum disorders (ASD). Accurate and meaningful AATA is critical to the development of a plan that both fits the student’s interests and strengths and meets the student’s needs. 

Application of this process for students with ASD requires special consideration. The goal of this guide is to assist the team in understanding these issues and to provide assistance with the development of an AATA plan. The resulting plan should provide useful, accurate and individualized information that leads to critical skill development for the future based on the student’s preferences interests, needs and strengths. 

View Age-Appropriate Transition Assessment

Employment

In this volume, Employment, the user will focus on the post school outcome of employment. The guide begins with a  focus on planning and preparing the individual with autism spectrum disorder (ASD) for employment during the transition years. As the user moves through the volume, the focus comes to include information and considerations for those seeking employment or for those currently employed. Implications for the individual with ASD are highlighted as well as resources for improving career development and employment support. The goal of this volume is to help the user understand  the issues surrounding  successful employment for the individual with ASD and to highlight the supports and resources  that lead to and assist in maintaining meaningful employment. 

View Employment

IEP Transition Components

In this volume, IEP Transition Components, the user will be introduced to the legislation that supports transition planning for the individual with a disability, as well as the legislation that provides for ongoing services for adults with disabilities. Each step of the IEP transition planning process will be explored to allow users to review their own documents and plans. The goal of this volume is to assist in creating a process that results in a meaningful  IEP document for the youth with ASD that will serve as a guide for the team in the future. 

View IEP Transition Components

School-Age Programming

In this volume, School Age Programming to Prepare for Transition to Adulthood, the user will take a close look at important elements  of educational programming for transition-age youth and the implications for students with autism spectrum disorders (ASD). While academic achievement is a required area of focus of an educational program, other areas of skill development that must be considered as well in order for students to achieve a successful adult life. For students with ASD, this includes issues such as social competency and life skills development. 

The goal of this guide is to assist the team to understand these issues, to offer strategies and to suggest additional resources that can  enhance the development of a secondary education program that prepares the student for a successful adult life. 

View School-Age Programming

You can click on this link to get more …..http://www.ocali.org/project/transition_to_adulthood_guidelines

Warrior parents fare best in securing autism services

This just published today in the Los Angeles Times

Finally statistics confirm what so many families have known; when it comes to services

all things are not equal. Areva Martin and I formed Special Needs Network, because we saw first hand how families were being impacted and why we need groups to teach advocacy to families living in under-served communities.

Warrior parents fare best in securing autism services

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. 

Paranoid or Prejudiced – Discrimination & Litigation a Tale of Two Schools

“I was so frustrated it didn’t make any sense and it was unfair, it was discrimination!.  

How could our kids attend magnet schools, which are open to all children, if transportation was not an option for them? The district had effectively made it impossible for kids with issues like Nicky to attend the magnet schools – by restricting access.”

I've heard stories for years detailing how middle school inclusion failed because our kids became outcasts under the academic and social pressures in middle school, and how success depends on the attitudes of the administrator in charge of special ed, which we never control.  That said, leaving the quasi safe environment of elementary school for middle school, was not a change I welcomed.  I took middle school seriously, and I applied to a small K-12 magnet school from our districts “Choice’s” program and a small learning community (recommended by his IEP Team) at our local middle school.  In reality the challenges I encountered were not the one’s I was told about, but being emotionally prepared for an uphill ride helped.

Five months of unwelcoming conversations, requests for new documents and assorted problems delaying the processing of his application with our local school - ended with this voice mail from an administrator “Do you really think this program would be good for Nicholas and the other 31 students in the class?”, left on the last day of school without a return phone number!  Instead of ignoring me, we could have spent the last 5 months addressing their concerns about how to successfully include Nicky. Any doors I had left open for the possibility the school was simply disorganized, or the unreturned calls and requests for unusual paperwork were not about him, were closed after hearing that message.

I was getting really discouraged. Thank goodness I took my own advice and applied to more than one school, because the other school called and offered a slot to Nicky. I was so happy, a school called us, they wanted him.  I felt like Sally Field in her “You Like Me” Oscar speech. I was so excited I immediately took the spot.  

School started, I began requesting an IEP to address Nicky’s transportation needs. 1 month into the school year I was still spending 3 hours a day driving Nicky back and forth. Finally, I received a letter saying the school district would not provide transportation.  I thought Magnet schools were required by law to provide transportation for attendee’s living outside a certain radius.  I was happy to put Nicky on one of the bus’s provided for other students; he just couldn’t ride safely without an aid. I was so frustrated it didn’t make any since and it was unfair. How could our kids attend the magnet schools which are open to all children, if transportation was not an option for them? By refusing to provide health and safety supports to enable Nicky to ride the bus, the district had effectively made it impossible for kids with issues like Nicky to attend the school – by restricting access.  I wanted to believe it was just the result of confusion; It must be me, I wasn’t speaking to the right people.  My mission ended when an administrator was directed to explain the districts position to me. Our 20 minute conversation came down to this "The district was not required to provide Nicky with support to ride the bus. If I wished for him to remain at this school I could drive him." I literally broke into tears and asked if she understood what she was saying to me, in effect our kids could not go to the magnet schools unless their parents could drive them, and how many parents could do that?. I’m spending 3 hours a day driving him.  How long could I do it?  She then asked why he wasn’t at his local school, teary eyed I replied “They didn’t want him”.  I pressed on thinking I could say something, she could grab onto that would change the direction of the conversation, and she simply said “You choose this school, so you can choose to drive him or not. It’s up to you but our decision is final”.   

Beat up, outraged and discouraged I found a lawyer who filed a discrimination complaint with the Office of Civil Rights, asserting that the district discriminated against Nicholas on the basis of his disability because it failed to provide him with the necessary accommodations he requires in order the access his magnet school bus transportation both to and from his public school program and to and from school sanctioned fields trips.  Almost two years later it was determined that the district policy did discriminate against Nicholas and he was provided with transportation and supports.

The number of unfair things that happen to our kids defy comprehension or reason, they could keep me in angry, sad and tied up in knots and battles everyday if I let.  Years into this journey I’ve learned those are not the feelings I want consuming me. So I pick my battles, in an effort to leave room to be happy and live our life.  Looking back, it’s pretty clear things worked out exactly how there were supposed to, and this go round I fought the right battle. Nicky loves his school and it’s a wonderful fit for him. Because it’s K-12 he’ll be there through HS. If I had battled to get Nicky into our local school, he would have been in a school where he wasn’t wanted, and we would been looking for a HS next year, and we would not have fought a battle that could help so many kids. 

Thanks Nicholas for another opportunity to make a difference.

A very special thanks to our attorney Jodi Ossen Bynder of Newman Aaronson and Vanaman.  If  anyone has any specific questions about the complaint filed with the Office of Civil rights. Email me at autismdaybyday@gmail.com

The Dummies Guide to Winning for Your Child in IEP Meetings

It's IEP season and I just got an Email  from a mom whose son is about to transition from preschool to elementary and she'd appreciate any  input to avoid the inevitable conflict and tug of war she was expecting. 

My best advice is:

• Be prepared. Take nothing for granted. Know what you want for you child and be ready to explain why. Explanations that do not work include; Because, Other kids have it, I heard it works, I think it's a good option won't cut it. Even when it's true it's not a good argument. 

• Bring your own data. If you have access to outside evaluations and reports before your IEP, get them and bring them with you. If outside evaluations are not an option for you, make a journal and keep a record of what's happening with your child (day by day and even hour by hour if necessary to show patterns) at home, in the community, at school, in therapies. Use your journal to draw a clear picture of what's going on with your child. Showing your detailed knowledge of what's working and what is not establishes you as a serious parent and advocate and it can make all the difference. 

• Bring Support; Find out how many people are going to be in the IEP meeting and take an advocate, friends or family to try and have an equal number of folks on each side of the bargaining table. It just seems to bring balance and reduce the vulnerability of being outnumbered. 

• Learn your legal rights. Treat the IEP like a negotiation. I have some materials on legal rights and the IEP on this blog and I recommend visiting http://www.ncld.org/parents-child-disabilities/ld-rights and http://www.specialeducationadvisor.com/top-ten-parental-rights-in-special-education/

• Stay calm, but make no assumptions that everyone will have the same plan for you child. 

• Visit the school first, see the programs, meet the staff. Your school setting is going to one of the most important settings in your child’s life, you want to build relationships so people will work with you. If you want to be in that school remember it's okay to be firm and fight a good fight, but remember that you're gonna be around these people for years. Think ahead to what you want that relationship to feel like after the IEP, and for the next one.

• Know Your Options. If the IEP is a total failure or just not what you want to sign off on, don't  sign it. You don't have to sign the IEP if you don't agree with ALL of it. You also have the legal right to challenge it and go to the next level. 

• It can't all happen at school. In truth there are some things that can't happen at the school level. Some decisions have to be kicked upstairs, it's not a ruse.

• People First: I always remind myself that teachers are so valuable, and they are not paid enough for what they do. So they must be there because, even if I can't see it, they care they want to help". This helps me to stay calm. I know that making an enemy out of the school team no matter how much we may differ, won't help Nicky.

Then she asked what my first IEP's were like. I was honest…for me those early years were awful and I am so glad they are behind me. The years when we just know so little about ourselves, our children and the systems that are supposed to support us. The years where we are grieving and desperate to help our children, often armed with little more than passion are rough. I'm not sure if the early IEP's were rough because of other people, or if they would have had a different outcome if I had been more knowledgeable  Who know's, but I do know that I have had a few bad and many good IEP's. However it was the bad IEP's that taught me the most, and it is those lessons that I cherish.

Moving on she wanted to understand the challenge so I told her that after Nicky was diagnosed parents began to tell me that the IEP (Individual Education Plan) meetings were nightmares. I was nervous before I ever had one scheduled. An IEP is an annual meeting where parents are invited to join a group of teachers, administrators, therapist to decide everything from what classroom your child should be in, to what services he would get, to educational goals.

I was told over and over that if you were not prepared, your child would suffer because schools didn't just hand out services because the kids needed them, you had to prove you needed them. One mom even had a three inch IEP binder full of every report, evaluation, every doctor visit. She kept detailed notes about his development all neatly organized by therapy and dates. She told me that armed with her binder, and the knowledge that other parents told her "take nothing for granted" and "get an advocate" her IEP for her 5 year old had ended well. She had got the services she believed he needed and she was certain that her preparation was the key to her success.

Being the good warrior I started my binder and my first IEP was a success. Nerve racking but successful. Then came a transition IEP where I wanted him moved to a new school with a program that I felt was better suited to him. It was during this IEP meeting that I learned how bad an IEP could be, for me. The meeting lasted 7 hours, I developed a fear of IEP's that lasted for years. I remember trying to be calm as people debated what was best for Nicky. I even remember that the conversation went so far as to cast blame on Nicky and I instead of staying focused on how to help him...AMAZING. It was so stressful I was physically sick to my stomach before we finished. For hours we debated over which services he would get and why he needed a new program. Fortunately I had spent weeks collecting documents to prove what he needed I had documents what had happened. I knew the burden of proof was on me. I proved that his language skills has regressed in his current setting, I proved that he was not being properly supervised, I proved that the teacher gave him food that made him sick. I showed why if he didn't have an aid he would be a health and safety risk (Nicky was a darter), I proved that he couldn't get access to FAPE (Fair and Appropriate Public Education) with out one on one support. I even came prepared to prove that my kid who has greatly impaired speech and sensory integration challenges needed speech and OT.

They still denied his services and placement. I had to move on to legal mediation. In mediation I presented my information, and I got everything I asked for and everything Nicky needed.

After years of IEP’s - many of which have been incredible successful - I am finally past my over the top sick to my stomach type nervousness. All the same I don't think any family should go to an IEP unprepared. I know I will never go into an IEP unprepared.