Wednesday, April 19, 2017

Autism: Desperate for Answers and Solutions

Before we knew our son had autism and before he was referred to early intervention, we knew Gabe wasn’t talking as much as his talkative older brother or as much as the parenting books state.   I spent hours searching through child development books and language development books I could find.  I looked for ways to help Gabe learn to talk.  I thought if he learned to communicate all the other problems would disappear as his frustration levels dropped.   I bought books and toys hoping for a miracle connection with Gabe.  It never happened.
All of my research was done in bookstores and libraries.  The internet was in its infancy and not a viable source of information.  While searching the many bookstores, I never once even considered looking at the books in the “children with disabilities” section.   It never occurred to me that Gabe might have a disability.  This is a little surprising considering my parents are special education experts and I taught a special education class for a few months as a long term substitute teacher.  But I had on blinders.  I couldn’t even let the thought enter my head. 
All the general development books say is “read, read, and read”.  Read to kids to help promote language development.  Read so they can model language.  Read to foster social interaction.  Read.  Read. Read.  Not a single one gave suggestions for the child that abhorred reading.  Neither did they indicate I should consider he had a disability.  Maybe they did but I was not able to recognize it as it related to Gabe’s situation.  These were frustrating and terrifying months.  I remember looking at all the books about learning a second language and wishing for at least one book about learning a first language.
Around this time my father borrowed a book from a speech therapist in his school district called It Takes Two to Talk(Jan Pepper, 2004)   This book gave me the first clues on how to help Gabe.  I was very frustrated that this book was not available to the general public even in the large bookstores near Ohio State University.  If my father wasn’t working in special education and discussing Gabe with a speech therapist, I never would have found the book.  This book was a start and it gave me hope but it did not contain the answers I needed.  Our desperation remained.
When we were first learning that Gabe had a disability the internet was still very new.  But, it had progressed enough that I was finally able to use it for limited research.   It had a few relevant and reliable sources.  Even with our now archaic dial up connection and ancient computer, I was able research without traveling to a larger city or university library.   Rather than comforting me, the plethora of websites with conflicting information and opinions, overwhelmed me.  Had I caused his autism by having him vaccinated?  Thank God the “Refrigerator Mom” theory prevalent in the 1950’s was debunked by this time. 
Website after website discussed the latest theory that vaccinations were causing the rise in autism.   I read horror stories from parents who claimed to watch their children’s transformation from normal to autistic immediately following the shots.  So many sites proffered solutions ranging from simply removing glutens from the child’s diet to ridiculously expensive intensive individualized therapy and potentially dangerous procedures.  What I read terrified me.  I was scared that the only future for Gabe after his father and I died was for him to live in a group home.  My greatest fear revolved around his inability to communicate.  He needed to be able to communicate enough to not be exploited or hurt.  At the very least he needed to be able to tell someone if he is hurt.  At 3 years old, he still could not tell me when he was hurting or hungry or thirsty or tired let alone tell me someone had done something to him that they shouldn’t.  
I was desperate for answers.  I was willing to spend any amount of money on a toy, video, book, or therapy if it promised to fix whatever was wrong with Gabe.  Probably the only things that saved me from wasting massive amounts of money were my own extreme tightness with money and scientific skepticism. Ordering o line was not nearly as easy as it is now.  I would probably have wasted more money if it had been.  I was desperate and felt an urgency to finding answers that almost made my head explode.  Gabe was vulnerable unless he learned to communicate.
I did buy all sorts of books and toys hoping for a miracle.  Gabe had no interest in the books and toys his older brother had loved.  If he even looked at something in a store I pounced and bought it.  He loved sand, water, and trains.  Books and anything that involved other people were of little interest to him.  Any toys he seemed to like at therapy, I bought but he ignored them at home.  His brother enjoyed all of them but not Gabe.
During Gabe’s second and third years, he repeatedly and consistently rejected almost every attempt I made to read to him.  He squirmed and wiggled until he slid off my lap.  Gabe had a way of making his body rigid and unbendable.  Nothing I did could make him bend and sit when he wasn’t interested. There were only two books that he consistently would let me read to him during this phase: Walt Disney’s Mulan picture book which matched the Disney animated movie Nate loved to watch and a barnyard counting book I had read to him since he was very small.  I tried book after book.  Sesame Street, Disney characters, bright colored books, and all the books loved by his brother, Gabe scorned all of them and tried to escape.  I spent hours in the bookstore looking for books he might like. 

Finally, I gave up fighting him.  I needed to build on his interests.  Gabe loved trains.  I found a thick book about trains that had lots of pictures.  We looked through that book every day.  I didn’t read to him but at least he was sitting in my lap listening to me talk about the different trains.  I can still remember him turning the pages and looking intently at the book.  This led to what I dubbed “Train Therapy”.  I was still desperate but now it seemed we had a way to connect to Gabe.

Tuesday, April 18, 2017

Public vs Private; Response to PragerU

Response to “Special Needs Students Want School Choice Video on PragerU by Jake Olson”

Not many topics can trigger me to action as quickly as those related to the education of special needs children.  At first I was excited to hear the success story told by Jake Olson in his PragerU video.  He overcame the loss of his sight academically and socially from the sounds of his video.  My excitement turned to disappointment when he started talking about school choice and private schools being the only way this could possibly have occurred. It worked for him but that does not mean that public school are unable and unwilling to provide similar levels of education to special needs students even those who are sight impaired.

From the video:
“I went to Orange Lutheran, a private high school in Southern California. My school gave me a tutor that was able to help me through Calculus and other Advanced Placement courses. They gave me the same opportunities and expectations as any other student. And now, I go to a great college. But this was only possible because I was born into a family that could afford private school.  In California, that’s the only way special-needs students can be assured a good education.
Why? Because in California, and in most states, if you’re a special-needs student, you don’t have any choices. If you cannot afford a private school, you are stuck -- in going to the public school that the government chooses for you. I tried that at first, but right off the bat there were problems. All the special-needs students in my district were grouped into one class. Academic ability didn’t matter; interest didn’t matter; it only mattered that you had a disability. Even if I were to outperform other students, say, in Honors Chemistry, I couldn’t take the class with them because I was blind. And this was in Orange County, California – home to some of the nation’s top public schools! Imagine what it’s like in less fortunate communities.
But, thanks to my parents, I had options. So I left the public school and went to a private one.”

My son was diagnosed with autism just shy of his third birthday.  At the time, he was very autistic. Non-verbal.  Non-social.  Non-everything.  His future looked bleak.  I won’t bore you with the details except to say it was a very long and difficult journey from the little boy who experts thought might never become independent to the college sophomore majoring in business and finance.  For this video, the most important part of the story- All His Education and Therapies Were Provided Through Our Local Public Schools. 

I never enrolled him in private therapy or private lesson.  Not even a tutor.  We never had the money to afford such things and we made sure that the local schools provided what he needed as is required by federal law.  At times, we were at odds with the schools and had to push for his inclusion in the local school with typically developing kids.  Always the goal was independence and integration.  By high school, he needed only minimal assistance.

IDEA (Individuals with Disabilities Education Act) clearly defines the legal requirement to educate children with special needs in the Least Restrictive Environment (LRE).  The LRE should be used as a driving force for integrating the children with typically developing children as much as possible.  For most children I have known over the years, this means a special education class for core subjects and extra help but regular class for extra-curricular subjects and socializing.   Many are like my son and transition back into the regular class for more and more subjects as their skills develop. 

But my son wasn’t blind you may say.  So?  When we arrived in this small rural district there was a freshman in high school who had been blind since birth.  The only major placement accommodation made for her was to place her in one of the smaller elementary buildings rather than the large one.  This may have been her normal placement based on residence.  I don’t know for sure.  Therapists and tutors came weekly to help her learn to navigate with a cane and read braille.  An aide translated worksheets and tests into braille.  The student’s braille machine hooked to a computer to print her work for the teachers to read.  This student also played drums in the band and marched.  Yes, a blind student marched with the band.  She graduated with honors and later graduated with a degree in special education.

You may think this was just a couple of flukes.  A couple times when the system that usually fails actually worked.  I worked as a substitute teacher for years in my son’s school district.  I wanted to keep an eye on him and learn as much as I could about the various teachers and classes he would encounter.  Time after time I saw students with disabilities receiving quality educations comparable to typically developing students.  A student began losing his eyesight in elementary school.  Like the other blind student, he has tutors helping him learn to cope and a tutor to learn braille.  

A deaf student returned to our school after years in a school for the deaf.  He had an interpreter but was integrated with his peers.  Sadly, I can not tell you this deaf student graduated with honors and went on to attend college.  Elliot died suddenly during his sophomore year in high school. The week after homecoming, a Tuesday I believe, Elliot started feeling a little off.  The next day he died.  The same conditions that caused his deafness left his body much weaker than any of us knew.  The whole town mourned our loss.

I am eternally thankful that he and his parents decided that he should attend his local school instead of traveling to the city and the school for the deaf.  If Elliot had not attended our school, hundreds would have been deprived to the chance to know him and learn from him.  Despite his difficult life, Elliot had a spark of life that was beautiful and contagious.  That learning and growing as a community is one of the goals of the LRE.  Isolating Special Needs Students into private schools deprives all of the chance to become a community.  In only the most extreme cases who I advocate for alternative placements.  My goal for my children Is for them to become independent and contributing members of our society.  They cannot learn to become members of a community if they are isolated. The community cannot learn to accept them if they are segregated.

I have not always agreed with recommendations of my school district and have fought hard for my son to be challenged and integrated.  The IDEA provides the path for parents to advocate for their children and push for the student’s needs be met.  I do not live in California and do not know California law.  However, it can not over ride federal law which state a LEAST RESTRICTIVE ENVIRONMENT.  Placing all blind students in a single classroom and refusing to allow a student to attend a class just because he is blind is a clear violation of IDEA.  As a parent, I would have fought that. I fought for my son to be in regular classes as much as possible from the time he was in kindergarten until high school.  Parents have a voice and power in the IEP (Individual Education Plan) development.  It needs to be used. For those of us without the resources to send our children to expensive private schools, working within the system is the only option but it is an option that can be optimized and productive.  My son was once thought to need constant supervision and some had little hope for his future academically.  All his success is through our public education system.  It can be done.