Sean Wasn't Born This Way--Fighting for Inclusion, Articulate Speech, and Appropriate Behavior

I've enjoyed the many private messages I've received since the show Born This Way aired.

Because I find myself repeating many of the same things I'm going to include the info here so anyone who missed it will be able to find it. (OK, I’m lazy and don’t want to type the same things over and over)

Fighting for Inclusion, Articulate Speech and Appropriate Behavior--all challenges we faced.

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When My Son said “I Don’t Want a Girlfriend with Down Syndrome” on TV!?

 Mortified. 

 The conversation commenced, “Sean, you have had a few girlfriends, and all but one has Down syndrome. Why did you say that to Rachael?”

“Rachael is my friend. I don’t like her like a girlfriend. I didn’t want to hurt her feelings.”

Men. Even men with disabilities are clueless.  This isn’t the first time I’ve heard men with Down syndrome say they didn’t want a girlfriend with Down syndrome…or even any disability.

Sean was a babe in arms when we attended the book signing of Mitchell Levitz and Jason’s Kingsley’s Count Us In.

Mitchell explained in no uncertain terms that he didn’t want a girlfriend with any disability.  The confidence our young men carry is admirable, but to employ those beliefs will leave them sorely lonely in the long run.

I made myself a mental note at that time, that I would set the expectation for Sean that his girlfriends would have some sort of disability. When he discusses his crushes on celebrities I ask, “Does she have a disability?” I want to introduce the reality that there will likely be no romantic relationship with a person without a disability.

Some may think I’m limiting Sean, but to allow him to believe otherwise would be truly limiting his opportunities for the relationship he desires. We are romantically attracted to people who have things in common with us, beliefs, interests and life choices.  If a typical girl was romantically interested in Sean I would have to question her psyche and possible ulterior motives.

Sean has apologized to Rachael and they continue to be friends. Thankfully she has forgiven him, and I only hope the rest of the Down syndrome community can forgive him…he thought he was being nice and letting her down easy.

After seeing this scene on TV and another discussion tonight I have reinforced that simply saying, “I like you as a friend,” is the nicer response.

Born This Way on A&E

Encourage not only your friends and family, but also your Educators, OB's, Geneticists and employers to watch Born This Way featuring 7 Adults with Down Syndrome

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Sequel Who's the Slow Learner? Adventures in Independence Is Published!

Adventures in Independence is the story of Sean McElwee’s journey into independent adulthood. It is a story unique to Sean, his parents Sandra and Rick, and the village that supports him, but it is also a story recognizable to many. It is about the love of parents willing to do whatever it takes to make a better life for their son – told through a series of poignant and often hilarious anecdotes.

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What to Say

    Since this is Sean's birth week, I wanted to share what happened after we found out he had Down syndrome.  
     Rick had to call the person doing our birth announcements with Sean's stats: "9 pounds 3 ounces, 21.5 inches long, etc." My thoughts were that our friends and relatives really needed more information about our son than his vital statistics.
     After telling four friends of his diagnosis over the phone and in person I really didn’t like their reactions. They were getting upset and apologizing. Their "I’m sorry’s were compelling me to comfort them and tell them "It’s O.K." and I didn’t have the emotional energy at the time to 
continue to deal with their sadness, when I had a new baby that I loved anyway, no matter what he had and I was worried about because he was in intensive care at the time.
     Then I thought, "well if this had happened to one of my friends what would I have said?" I couldn’t retrieve from my memory files anyplace I had heard the proper response, or even the improper response. So I decided to add a note to my son’s birth announcement telling people how we wanted them to respond. It read:

Dear Family and Friends,

Sean is a very special baby, and the birth announcement can’t possibly say it all. God has made Sean special and chosen us to be his parents...we feel blessed. Sean was born with Down Syndrome. We want to give you time to adjust to the news, so you wouldn’t feel the need to have an immediate response. We hope you will feel the same as we do, we’re happy and proud. We would like you to see him as we do, a beautiful baby boy. We also want you to treat him just like any other baby---Congratulate US. We have a baby, we’re a family now. This is not a sad moment, PLEASE do not apologize, we aren’t sorry. We are still gathering information on Down Syndrome and probably won’t be able to answer any questions for a while. We would like to encourage you to call us, come to see Sean. He sleeps, eats, cries and dirties diapers, just like every other baby, he’s just got an extra chromosome.

As time went on people said all kinds of stupid things to us.  And they still do.  In the beginning I was astounded, but today I realize they don't have anything but good intentions.  When Sean was 4 I wrote a whole presentation on 'What to Say' and presented it to a MOPS Group at our church.  It went viral in it's day, was used as a template for the Down syndrome Association of New Zealand's pamplhet "I Don't Know What to Say' that was included in their new parent packets.  Parents in several states asked and were granted permission to personalize it and give it in their area. It was printed in it's full form in one book, and in an edited version in "You Will Dream New Dreams."  I am thrilled that Sean's birth announcement and the speech touched so many lives.  The full text is linked here if you would like to read the whole thing.

http://www.whostheslowlearner.com/what-to-say/

Becoming A Parent…To a Child with Disabilities

Becoming a parent to a child with disabilities isn’t so different to becoming a parent to any child. You go into labor, push, push, push.  End up with a C-Section anyway, but in the end, there is a baby.  The baby is a baby, he’s my baby. I love him more than anything on earth, no matter what.

 

Then you leave the delivery room.

 

And all of a sudden the expectations can become overwhelming.  As a parent of a child with disabilities you have to become a student.

 

First a student of medicine.  The terminology must be deciphered; ASD that’s a hole in the heart…not a big deal, you learn after his first dentist appointment 2.5 years later, one out of every 250 people has one.  But it was pretty scary at 4 days old.

 

Medical professionals spend about 2 hours learning about Down syndrome in medical school.  They are told in that two hours that people with Down syndrome are profoundly mentally retarded, pacify the parents, dole out antibiotics, the kids will be sick all the time anyway.

 

Then after doing your own research, you find out there are actually vitamins that keep your baby from being sick all the time. But the medical professionals poo-poo them.  Well, not all of them.

 

That is when you become a student of Human Resources, interviewing the medical professionals to find the ones that actually have taken time AFTER medical school to learn more.

 

Geneticist: An extra 21st Chromosome. Thanks to the Human Genome project now we know what in our bodies is on that chromosome and what might go wrong, or might not, it’s still a gamble.

 

You never stop learning more about the medical aspects. Continuous learning it is called in the professional circles.

 

Then you become a Comforter. Comforting the friends and family members who think it is awful your baby has a disability.  Comforting new parents for years later continually telling stories of your beautiful baby and all he has accomplished as they sit in wonderment after a medical professional took all their hope away.

 

Then you become a Social Worker, learning the maze of available services, what they do, how they will benefit your child. And when your beautiful baby is three years old and thrust into the school system, you find out that you could have had more service, had you only known to ASK and your child would be more advanced developmentally had he received those services.

 

Oh, don’t forget those secretarial skills, filing, filing all those papers, evaluations, medical records…you never know when you’ll have to refer to them. And filling out endless forms, that all ask the same things over and over again.

 

The next Master’s degree is in Education Administration.  You learned as your child left the Early Intervention years there were services left on the table, you have become more adept at asking the correct questions.  Always looking for the appropriate classroom placement. Touring, interviewing and visiting every available classroom. Then because you ask all those questions, and seek help within the system, you are labeled a ‘Troublemaker’.

 

Then you get your Law Degree.  By studying the Education Code you find the legal basis for your child’s educational options, and as you present those legal choices you get labeled again. As a ‘parent who won’t settle for less than the best’ for her child.

That cute baby.

 

Oh yea, Advocate, there is some of that in there too.

 

Then you major in Marketing. Public Relations. First you have to market your child to the educational professionals, who don’t normally teach children with disabilities in their classrooms.  While you market your child, you work on your public relations, because, after all you have that label “troublemaker.”  Your child’s future depends on your success. That’s a lot of pressure.

 

Then you major in volunteerism.  Volunteering in the district then at the school, truly caring about all the students at the school. Truly caring about all the students in the special education system.  Encountering the most wonderfully accepting people you could every dream to know.  And encountering parents who have given up, and are on depression medication.  Their children are left to “the system.”  The constant studying has left them drained, nothing left to give.

 

Then you become a Psychology major.  Then it turns out that your child isn’t allowed to have any behavioral difficulties.  Students who don’t have disabilities aren’t held to as high behavioral standards as students with disabilities. And when your baby, your cute baby hits another kid, because he can’t say, “Leave me alone,” with his words he’s the one who gets in trouble. 

 

Then you become a Behaviorist.  Disciplining your child, as you are expected to do, and not daring to allow the other darling to have one bit of blame.  It is your job to figure out WHY your child exhibits certain inappropriate behaviors, and advise the school personnel on how to deal with those behaviors. 

 

Then you may become an author, writing about the experiences to help parents coming behind you to navigate more easily.  Learning the publishing world—another Master’s Degree.

 

What will my next degree be in? I can’t say, I will know when the challenge arrives, and I have to crack the books on a new subject.   I will refuse depression medication, and I will never give up for my baby, my cute baby.

Common Core—Not Individualized – More Testing for Our Kids Proves Nothing

I have been really concerned about our congressional leaders talking about driving compliance in our schools by testing our children with developmental disabilities MORE.

Why can’t we review IEPs instead—confirming that the child is included in regular education classes, and proper modifications and accommodations are being provided? I can’t imagine it costing more that testing does.

 It’s pretty well known that many of our children don’t test well, and while they may know the information, finding out if they know it by a test is cruel and unusual punishment for the child, teacher and the parents, who see one more failure—and it’s not their child failing, it’s the system…all the way to the top. Achieving an IEP Goal is a much more reliable indicator they are making progress.

Nancy Bailey nails it in her article, “The Real Meaning Behind the Duncan/Huffman Tough Special Ed Compliance Talk.”

http://nancyebailey.com/2014/06/26/the-real-meaning-behind-the-duncanhuffman-tough-special-ed-compliance-talk/

And Again with another article, “Common Core State Standards Don’t Rhyme with Individual Educational Plans.”

http://nancyebailey.com/2014/03/25/common-core-state-standards-dont-rhyme-with-individual-educational-plans/

She makes a great point that Common Core isn’t individualized—it’s one goal for all.

I am planning on going to DC This fall and talking with our fearless leaders about how far off base they are, and would love to have your input on last year’s school experience on my survey:

Inclusive Education Access Survey.  If your child was not included in regular education, I would like your responses too. The survey takes two minutes, is only 10 questions and I need at least 1,000 responses. Please share with all your friends.

https://www.surveymonkey.com/s/9LMZ8ZM

Listen to the Podcast Introducing Your Child to Their Classmates

The Inclusive Class Podcast interviewed me on how we introduced Sean to his classmates in first grade.  Listen to the Podcast here:

http://www.blogtalkradio.com/the-inclusive-class/2014/06/13/introducing-your-child-with-special-needs-to-classmates

I want to encourage you to create a personalized book about your child that their teacher can read to their class this fall.  You are welcome to use 'My Name is Sean and I Have Something to Share' as a template, and include the information in the back of the book about Inclusive Education.  Ask your child's teacher to read it to the class, then send it home with each student--and a note asking the parents to read it to their children...but first they should read the end of the book about inclusion and about the child's diagnosis (include a fact sheet on their disability) so the parents are prepared for questions their child may ask.

There were two big fears children had about Sean...first--because his speech was so delayed he would touch the kids to get their attention.  I would see kids pull back when he did hat so that text reads, "Sometimes I forget to use my words and I might touch you to get your attention. It's ok to tell me 'hands to self' and remind me to 'use my words.'  Second they were afraid they could 'catch' Down syndrome...like a cold.  Once we addressed those two concerns, AND the fact that he had a book written about him, (even though it was home-made on the computer) he became an instant celebrity.

Introduce your child...Sean was the first person with Down syndrome I had ever met, and I always assumed he would be the first person with DS that others would meet, so I tried to remove the fears of the unknown as much as possible.

Pass It On

Sharing what you have learned and articles, and information that support your philosophy with the educators can go a long way to fostering their support for inclusion.

I took handouts from seminars I attended, articles about inclusive topics, evidence-based research and I printed them out. I created a 3 ring binder 3 inches thick and had it divided by topic.  This notebook was provided for Sean’s teachers to give them some critical information on inclusion and I also updated ‘Tips for Working with Sean’ each year as different behaviors emerged.

 

This was the cover page for the binder:

This Notebook and it’s Contents are the

Property of Sandra McElwee

(If found or you have any questions please call _____)

The information contained within are articles written

about Inclusive Education, or Down syndrome and are being provided to anybody that is interested in more information about either.

Permission is granted to photocopy anything contained within this notebook, please do not remove anything permanently.

Contents

  1. Tips for Working with Sean
  2. Some Facts about Down syndrome
  3. Frequently Asked Questions about Inclusive School Programs
  4. Paraprofessionals in the Classroom: What Role do They Play?
  5. Neverstreaming
  6. The Special Edge; Dr. Alice Parker, Director of the Special Education Division of the California Department of Education endorses Inclusion
  7. Improving Education, The Promise of Inclusive Schooling
  8. Stocking the Pantry with the Essential Ingredients to Create and Maintain Inclusive Education (2 parts)
  9. Guidelines: Teaming For Successful Inclusion
  10. Building Inclusive Schools
  11. Checklist for Inclusive Schools
  12. Our School Doesn’t Offer Inclusion and Other Legal Blunders
  13. Friendships: Hell-Bent on Helping: Benevolence, Friendship, and the Politics of Help
  14.  Research Supporting Inclusion
  15. National Down Syndrome Society’s Inclusion Study
  16. National Down Syndrome Congress’ Position Paper on Inclusion
  17. Teaching Methods and Measurements for Reading and Math
  18. Going Against the Norm
  19. Integration: Being Realistic Isn’t Realistic
  20. The Need to Belong: Rediscovering Maslow’s Hierarchy of Needs
  21. People First Language; It isn’t Politically Correct, it is Politely Correct
  22. Teaching Children about Disabilities
  23. A Universal Design Process for Differentiating Curriculum, Instruction, and Assessment
  24. Steps for Modifying the Curriculum
  25. Example of Adapting Graphing Lesson
  26. Tying Shoes
  27. Typical Learning Differences
  28. Why Can’t you Understand What I am Saying? Speech Intelligibility in Daily Life
  29. Several Stories, photos of Sean and other miscellaneous items

 

I added to it each year, and at the end of the school year, before summer began each teacher ceremoniously passed it to the teacher for the following year—Summer Reading! When school started in the fall they didn’t have to figure this whole thing out on their own---which would be a huge learning curve and only delay Sean’s learning further.  I had the information, it was critical to share it with the educators so they would have it too.  I was educating the educators, and guess what? THEY appreciated it…in elementary school.  

 

For your notebook, there are so many more studies than there were when Sean was in elementary school, and the Internet is a rich library.  Find the items that apply and support your child, and start your own binder.

Life's a Beach...well, it was

Behavior equals communication. Behavior equals communication. Behavior equals communication.  People with intellectual disabilities do not choose to have bad behavior. There is some reason when their behavior changes.

Sean chose to stop attending his Transition Program in January. We supported that decision.  Our Regional Center (Dept. of Developmental Disabilities) granted him funding for a Day Program, which would provide a job coach.  Typically Day Programs get 60-90 days notice of a new client in order to have time to hire a job coach.  So Sean had nothing to do each day while waiting for his coach to be hired.

In February he started staying up late, and sleeping late.  I didn’t see a problem with this since he didn’t have any place to be each day.  He was playing video games and in his room at his Supported Independent Living Apartment (SILA).

At the end of February there was an Audit of the SILA by Community Care Licensing…and I was called for a meeting.

Turns out there’s a rule that a resident must take their medications in a two-hour-window each day, and there are no exceptions.  Because Sean was sleeping late he was missing his two-hour-window, and the auditor recommended they evict Sean.  In his defense they asked that he be put on a 30-day-warning to be able show that he could get up and take his medication within that window.  I tried to move the window to later in the mornings, but while the auditor was there he made them call the doctor who said the medication must be taken at 8am…so Sean’s window was 7am to 9am.

In March Rick and I called Sean every morning to make sure he was up and had taken his medication by 9am. He did fine until March 20th and he couldn’t wake up.  So I brought him home until April 1st when his Day Program began.  I thought once he had some structure to his day that he would snap out of it.  Interesting while he was home he put himself to bed by 10pm every evening, appropriately tired after his day.

On April 10th Rick and I took a long-planned trip to Africa.  Sean was mad that we didn’t take him and while we were gone he missed us and he was depressed.  There were several days that he simply couldn’t get out of bed.  Instead of comforting him, and understanding, the staff where he lived became punitive and treated him like he was a delinquent.  For those of you who have read my book know that Sean has a 6th sense and KNOWS when he isn’t accepted and wanted, and his reaction that that spirals his behavior out of control.

We returned from our trip and on April 29th I was told Sean was being evicted because he refused to take his medication 6 of the days in April.  During this meeting the nurse on staff mentioned, “Sean has no problem taking his nighttime medication on time.”

Sean has NO NIGHT TIME MEDICATIONS!  I asked her what she was talking about, and it turns out when his doctor renewed his prescriptions in FEBRUARY she made a mistake and changed one to PM instead of AM.  The medication she changed to PM is a stimulant…it increases mental processing.  She was wiring Sean up then sending him to bed…no wonder he was staying up late at night! He COULD NOT GO TO SLEEP!

This medication stays in the system for 12 hours, so by the time the morning came around it was out of his system.  When he doesn’t take it, he has anxiety because he can’t process everything going on around him fast enough.  When he has anxiety he acts angry, frustrated and will yell at people, use an angry tone of voice and storm off. 

Add sleep deprivation.  A perfect behavioral storm.  The nurse at his SILA should have co-related the behavior change to the medication change.  I had no idea that the change had occurred.  She assumed I knew.  February is when he started staying up late. February is when the time of his medication changed. WHO's THE SLOW LEARNER???? 

The manager of Sean’s Day Program came to try to wake him up two different days. He was planning on telling me Sean needed a medical examination because he could see Sean was physically unable to wake up.  This man has met Sean 4 times and recognized there was a problem that was not behavioral, and the staff where he has lived for 7 months didn’t recognize his struggle.  This man also told me the staff had an attitude towards Sean, he said the staff had labeled him ‘A Behavior Problem.’  He sent me this short video about labels…and it fits Sean's situation.

https://www.facebook.com/photo.php?v=438332119646375

I didn’t raise Sean to be sweet. I hated the sterotype 'they're such loving children.'  I raised Sean to advocate for himself. But people don’t listen to him. They translate his lack of compliance as a behavior problem.  If he had been listened to at his home…a place that people with intellectual disabilities should be understood, respected and listened to then his medication error would have been caught, his frustration and inability to focus and lack of  sleep would have been understood and he would not have been blamed.  Behavior equals communication, nobody cared enough to figure out why his behavior changed, they were just afraid of an oversight agency citing them.

I was in the process of trying to get Sean another 30 days--with proper medication--when a new girl moved in…Sean was eating lunch with her then called her a ‘hippo.’   Bullies have been bullied.  Sean was being treated wrong by the staff, so he picked on the weakest person there, and we were told to pick him up immediately.

At the end of our trip to Africa we had to fly in an 11 seat prop plane around Mt. Kilimanjaro…in a storm…I knew I was going to die.  The entire 45 minutes I prayed and listed to praise music on my IPod.  What would have happened to Sean if Rick and I had died during that flight?

The moral of the story is nobody will love your child/adult like you do.  And I know now that I can never die.

Fight With Evidence that Inclusion is Best

     Since Who’s the Slow Learner? A Chronicle of Inclusion and Exclusion has been out I have heard from many parents who are still struggling even at the kindergarten level with gaining acceptance by their school districts to include their children with a variety of disabilities.                                                                                                                   

     I don’t profess to be an expert on this inclusion thing, just a parent who was forced to research and fight, by trade I am a medical device sales person.  And in the medical world you must have evidence that your product/drug/device works or there is no moving the process forward with lives on the line…lives that depend on the product working the way it is claimed to work.

     Education is also evidence-based.  New textbooks are examined, new ways of teaching are examined by the evidence that they are effective and beneficial to the students. Lives depend on the evidence in education as well. 

     The reality is kids not just the children with disabilities lives’ are marginalized by the schools that say ‘we don’t do inclusion’ but also the regular education students miss out significantly by not being allowed to learn along side their peers with intellectual disabilities.  And the evidence speaks loud and clear.

      In 2008 Robert Jackson, Ph D., examined 40 years of worldwide evidence comparing segregated educational practices with inclusive practices and found that children with an intellectual impairment benefit from inclusion academically and socially. While the advantage over segregation was sometimes nonexistent or small, in the larger samples and meta-analysis, significant benefits were found for inclusion, with children who were segregated losing percentile ranks in comparison to their peers. No review could be found comparing segregation and inclusion that came out in favor of segregation in over 40 years of research.

The full comparative study can be found here:

http://www.include.com.au/wp-content/uploads/2011/11/Inclusion_Seg.pdf

If the educators poo-poo that study because it was done in Australia, know that he examined world-wide evidence, but if they are looking for something closer to home in a similar comparative study Mary Falvey (2004) notes that “no studies conducted since the late 1970’s have shown an academic advantage for students with intellectual and other developmental disabilities educated in separate settings.”

     The full comparative study can be found here:

http://www.mcie.org/usermedia/application/6/inclusion_works_final.pdf

     So let’s ask our educators, do they provide education based on evidence of what works, and what benefits their students the most? And if they answer ‘no’ then we certainly don’t want them educating ANY students, but if they answer yes, let’s print these out and become the teachers, educating them on the research, on the evidence that not one study EVER has shown that segregation is more beneficial to any student than inclusion.  

My Name is Sean and I have Something to Share Now Available

When Sean was in first grade I created a book on our computer to introduce him to his first grade classmates.  We had encountered a few children who were afraid they could 'catch' Down syndrome, they couldn't understand his words and and we also needed to enlist them to help Sean stop throwing rocks. Information is empowering and his teacher read the book to all four First Grade classrooms.  Sean was an immediate celebrity, and the kids then understood how to communicate with him from the information contained in the book as well.  As I wrote 'Who's the Slow Learner? A Chronicle of Inclusion and Exclusion' I wrote about this book, and decided that it should be available. So I had it published as well.  Now you can get one at http://www.amazon.com/dp/1478729570

It will be available on BarnesandNoble.com soon as well.  I also had read books like this to Sean when he was younger then would say, "You're just like the boy in this book!" I used these books as a way to explain to Sean that he had Down syndrome so he would always 'know' and never have the day that he 'learned' of his Down syndrome.  I don't know who she was but a young woman had come onto our internet Down syndrome listserv and told us the story of her sister finding out from a social worker at age 14 that she had Down syndrome. She was very angry at her family for many years for not telling her first.  Acceptance of oneself is critical to becoming a well balanced adult. And acceptance can only happen when you know what you need in the way of supports, and being able to communicate those needs.  

Siblings can also learn from this book and it has many photos of Sean participating in sports and other activities he was active in during first grade.  It truly shows that he is more alike than different!

Accommodations and Modifications “Fair” is not everybody getting the same- fair is everybody getting what they need.---Unknown

Accommodations and modifications need to be individualized for students, based upon their needs, and their personal learning styles, and interests.  It is not always obvious what adaptations, accommodations, or modifications would be beneficial for a particular student, or how changes to the curriculum, its presentation, the classroom setting, or student evaluation might be made.

     The term "accommodation" may be used to describe an alteration of environment, curriculum format, or equipment that allows an individual with a disability to gain access to content and/or complete assigned tasks. They allow students with disabilities to pursue a regular course of study. Since accommodations do not alter what is being taught, instructors should be able to implement the same grading scale for students with disabilities as they do for students without disabilities. Examples of accommodations include:

·         sign language interpreters for students who are deaf;

·         computer text-to-speech computer-based systems for students with visual impairments or Dyslexia;

·         extended time for students with fine motor limitations, visual impairments, or learning disabilities;

·         large-print books and worksheets for students with visual impairments; and

·         trackballs and alternative keyboards for students who operate standard mice and keyboards.

·         IPAD and Apps—beg, borrow, fund raise but get an IPAD

     The term "modification" may be used to describe a change in the curriculum. Modifications are made for students with disabilities who are unable to comprehend all of the content an instructor is teaching. For example, assignments might be reduced in number and modified significantly for an elementary school student with cognitive impairments that limit his/her ability to understand the content in general education class in which they are included.

     Sean’s curriculum was highly modified and accommodated. One of the biggest misunderstandings of inclusive education is to think that a student with Special Educational Needs must comprehend and be able to keep up with the regular education students.  That is not true at all.  While in High School Sean learned about the government, he didn’t write term papers, he circled the answers on modified worksheets. But he still learned about the government.

     Behavior interventions can be included as a modification.  When Sean was in junior high the district designated a BICM—Behavior Intervention Case Manager for Sean.  This is a person who has received formal training on functional analysis assessment and the development and implementation of Positive Behavioral Intervention Plans.  The formal training includes a review of the regulations pertaining to behavioral interventions and their implementation, conducting all aspects of functional analysis assessment, and developing positive behavior intervention plans based on the functional relationship between the problem behavior, it’s maintaining variables, and alternative replacement behaviors.

     Inclusion without accommodations, modifications and support services is otherwise known as DUMPING.  When a student with special educational needs simply is put into a regular education class with nothing else being supplied is a sin of the greatest proportion.  That is the fastest way for the district to prove that a students should be in special education and not included....by setting them up for failure.  

Here's a link to a list of possible Accommodations and Modifications, but it is nowhere near a complete list of everything that can be implemented.

http://www.smartkidswithld.org/getting-help/the-abcs-of-ieps/examples-of-accommodations-modifications/

Where Did the Title, and the Idea for the Book Come From?

     I’m a big fan of the Blue Collar Comedy guys and love Bill Engvall’s “Here’s Your Sign” stories and Jeff Foxworthy’s “You Know You’re a Redneck…” bits.  Sean has always outsmarted all of us adults.  I frequently explained to his teachers that to teach Sean was easy, as long as they were smarter than him.  But when he hit seventh grade and I began documenting the outrageous behavior the educators and administrators were exhibiting, I kept thinking to myself, “Sean’s not the slow learner here.” 

     He had a Positive Behavior Management Plan (PBMP) that clearly outlined what would trigger an undesirable behavior, but they refused to implement the plan.  The result was them constantly triggering outbursts from him, then justifying their attempts to remove him from regular education by using those outbursts as "proof" he shouldn’t have been fully included in their regular education classes.  After I filed an IEP Compliance Complaint they attempted to change his motivators from video game and television time to raisons and cherrios I knew they were the ones who were taking much longer to learn than Sean was--he was in 7th grade, not kindergarten. 

     When we skipped 8th grade to avoid more hostility and went on to the high school the educators were a little more stealth, but after violating Sean’s civil rights five times I decided enough was enough and filed a Civil Rights Complaint.  That’s when I thought this could be a book---you can’t make this stuff up!  But I realized it would be a big downer to just write about the negatives, and the elementary school experience had been textbook brilliant. The amazing elementary school experience coupled with the great students Sean went to school with are the greatest testament to the powers of inclusion.  

     Sean's high school classmates were his biggest advocates and went to bat (literally) for him in high school…they saved his job as assistant to the baseball team, and got him into the Drama class play at the last minute when the teacher had not cast him in a role.   So, the contrast between good and evil began.  It took me seven years, two re-writes and several rounds of editing, but the book is now available for purchase as of this week.  I hope you enjoy it, learn from it and if you are an educator, never ever pull any of the tricks that the secondary educators did.

First Opportunity to Purchase Books!

Sean and I will be presenting at the Care and Kindness Conference in Mission Viejo, California on February 8th.  We will have books for sale and will both be signing them!  Many fabulous speakers, we are honored to be presenting at the same conference with them!  Details at http://careandkindness.org/MissionViejo/indexMV.php

Our Presentation:  Sean McElwee was born with Down syndrome and entered his neighborhood school as a fully included kindergarten student with the supports, accommodations and modifications he needed to be successful.  He was included in all aspects of his elementary school; learned to read, exceled in math, performed in Talent Shows and most of all made many friends.  Sandra and Sean will share the story of pioneering his inclusion with the result of transforming an entire elementary school from segregated special day classes to all students with disabilities becoming included in regular education classes.  Sandra Authored the Book, "Who's The Slow Learner? A Chronicle of Inclusion and Exclusion" the first book to follow a student with special educational needs' educational journey from preschool through high school graduation.  Sean is now 20 years old, lives independently in Laguna Beach attends a Transition Program and takes classes at Saddleback  College

Source: careandkindness.org/MissionViejo/indexMV.p...