Butterflies and Second Chances by Annette Hines: A book review

I recently read Butterflies and Second Chances, a memoir written by Annette Hines.  Annette wears many hats (wife, daughter, lawyer), but she writes this memoir as a mother of a child with a disability.  In a way, this is also a memoir for her daughter Elizabeth.  As I read Annette’s book, I was drafting my own memoir, and I could not help but notice how many parallels there are between her story and mine.  This holds true even though we had different roles in our families (she is a parent; I am a sibling), and we were separated by many years and miles in between.

Even though I noted some differences in stories, what stood out the most was the incredible similarities.  Annette evolved from being an “outsider” with little knowledge of what it meant to be part of the community of parents, family members, and people with disabilities, to being on the “inside.” She narrates with so much emotional depth how she became an insider after her daughter Elizabeth was born and medical issues began to surface.

Much like Annette, I evolved too, although my own evolution came much earlier in my life, as my brother was born when I was 7 years old.  I also became an insider little by little, learning more and more through the years, and adding my voice to the fight for equality when I became an adult.  Just like Annette, I remember the constant looking for answers.  My parents always had questions that mostly remained unanswered.

And much like Annette’s second daughter, Caroline, I felt like I was the “do-over” kid, even though I was born first.  In my case, I felt the pressure to be the “perfect daughter” all by myself, and I made sure that I would not give my parents the smallest headache.  I assumed that they needed a perfect daughter, an overachiever, a workaholic.  My long periods of perfection were accompanied by some periods of rebellion, which in retrospect were just a cry for help and my own way to show human needs.

Annette and I are also remarkably similar in our choice of loving partners.  We both married men who have supported us and provided the scaffold we needed in times of need.  In her memoir, Annette recounts how her husband stuck with her through thick and very, very thin.  I recently heard her say that she would “walk through fire” for her husband.  I remember thinking right at that moment that I would do the same for mine.

Annette’s career revolves around service to people with disabilities and their loved ones.  It did not start this way, but naturally, over the course of her life, service to the community became her profession as well as her life.  My own career and life are sometimes indistinguishable from each other.  I cannot divorce one from the other.  I have worked so hard to be an advocate that I can honestly say that my friends and family are advocates too, and many of them have chosen a profession of service to this community as a career.

Becoming part of the special needs community is a process, and no one is ever “done” learning better ways to be a full participant in this community.  In my own practice, I refer to the community as a big family, one that is constantly growing and extending its arms around the world so that we can all earn the respect that we deserve and claim our place in the world.  Annette’s focus is on building an ever-growing circle of friends, families, professionals, and caregivers, so that nobody ever feels that they must go it alone.

The parallels in our lives are so real and profound.

Thanks Annette, for allowing us into your life.  You made it easier for me to tell mine.

Get Butterflies and Second Chances here!

The Special Education Reform and Its Unintended Consequences: Part 2

The Special Education Reform as addressed by the New York City Department of Education intended to align process and policy more closely by emphasizing the core principle of the LRE (Least Restrictive Environment) and asserting that every student with an IEP would receive instruction, to the extent possible, with their peers who do not have an IEP (see Part 1 here).  Furthermore, the NYC Department of Education emphasized a policy that would consider strong academic standards and scores.  At face value, this sounds like the right approach.  Who wouldn’t want all children to be able to learn together and with the highest standards, right?

The problem with this approach is that as I mentioned many times before, the NYC Department of Education targeted equality, but not equity.  What does equity mean, as opposed to equality?  Placing two students, one with an IEP that calls for a self-contained class, and another one without an IEP, in the same 25-student class, is equality, but it is certainly not equity.  Too many adjustments would have to be made in order to serve this student’s needs, and even then, it may not work.  The appearance of equality does not support the reality of what students actually need.

This is exactly what is happening in many public schools in New York City.  I am sure that this is also happening throughout the nation.  The rush to make the “reform” a place where ALL students get the SAME education on the account of equality has resulted in extreme lack of services and desired outcomes for students with disabilities.  When I was still working with the NYC Department of Education, I saw cases like this almost daily.  I was told by the powers-that-be that my role was not to place students in specific classes or even provide information regarding the school’s classroom provisions. 

Once, I was told that giving information to a parent with a child with special needs, who happened to be actively seeking information, was unacceptable.  “That information should have never left your mouth,” my immediate supervisor admonished.  My supervisors’ supervisor (the person who managed all field enrollment in the city), once toyed with the idea of banning access to the special education system to all employees, so that we could not “see” what kinds of services the students needed.  It was not our job, she said, to deal with the family’s need to have their child placed correctly from day one.  This was the school’s “problem,” not ours.  Therefore, why would enrollment personnel have access to this information? She concluded.

Many children with IEP recommendation go without their recommended services and their recommended placements.  The approach of treating every student the same does not translate into treating every student with equity, with the supports that each individual student needs in order to succeed.  Children deserve to have these services in place from the first day of school.  Letting schools “figure out” how they will service the students robs them of months, if not years, of a proper education.

If you have a child with an IEP and you feel that your child is not making progress, you are probably in this situation. 

If you want to know how to best deal with this issue, join our private/free Facebook group so that we can discuss this better, and subscribe to my YouTube channel for updated information.

Stay tuned for more information coming soon!

The Special Education Reform and Its Unintended Consequences: Part 1

Like you, and perhaps like many other educators, administrators, and parents, I was excited when the New York City Department of Education adopted the Special Education Reform.  At that time, I was working with the specialized district in the city, namely District 75, and I was seeing the influx of students whom I felt could have been given a better chance in a regular school, perhaps with supports, perhaps with a self-contained setting.  I was appalled at the numbers of students who were referred to District 75 daily.  So, when the special education reform became policy, I could not wait to see its results.  What I could not anticipate was how quickly I would get to see its unintended consequences.

My brother Fernando, whose LRE was District 75

For starters, what is the special education reform?  To answer this question, I am going to be specific to New York City, even though similar versions of this have happened everywhere in the United States.  The New York City Department of Education decided the citywide rollout of this policy would start in the Fall of 2012, with a partial rollout as early as 2010.  It entailed following the provisions of the law at its core, regarding diligence when applying the LRE (least restrictive environment) to placement of children in special programs.  At its heart, the special education reform “is aimed at ensuring that all students with disabilities are educated to high academic standards, in the least restrictive setting that is academically appropriate, and at the same schools they would have access to if they did not have IEPs,” as then-Chancellor Walcott said in a letter.

My brother Fernando, whose LRE was District 75

As I mentioned, this all sounds good.  After all, we are following the letter of the law and applying its provisions.  Right?  That’s what I thought at the beginning.  I felt that too many students were being recommended services in a specialized school that could be managed in a regular school.  But what happened after the beginning of the rollout (between 2010 and 2012), was that many of the students who would have stayed at their regular schools in self-contained classes (see the continuum of services here), were now being recommended for District 75 schools. 

Why was this happening?  Many of the psychologists I talked to told me that since their schools were no longer supporting self-contained classes (whether in elementary, middle school, or high school), they felt that the children they were supporting would be better served in a smaller class, even if that meant transferring them to a specialized school.  This was the opposite of what the reform intended!  I was appalled, but I was even more appalled at the fact that there were close to zero self-contained classes available for these children that needed them.

My brother Fernando, whose LRE was District 75

Over time, and while I was still working with District 75, we noticed that the influx of students who had specialized school recommendations waned a bit, and for me, this meant that perhaps students were receiving more accurate recommendations at the school level.  Little did I know what was happening on the other side of the fence.  Students in public schools were being recommended classes in their regular public schools, but the services were far from being accurate for the children they were supposed to serve.

Do you want to learn more about the special education reform and its unintended consequences?

Stay tuned for Part 2 tomorrow and check out our YouTube channel and free/private Facebook group.

See you tomorrow!

Dr. Ingrid Amorini-Klimek.