Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30

Friday, August 24, 2012

Severe Special Needs and Back to School Reflections, Part 1

       For the next several months ('til November 3 when my daughter, Aimee, is wed and sanity returns to me), I would like to share my opinions about  public school systems and the education of children with severe special needs.  My son is now 26 and has been out of school for 4 plus years.  In Massachusetts, as I am sure in all states, Special Education services end at 22 years old.  After 22 years of age, there are NO entitlements (with the exception of SSI and Medicaid).  I want to share my experience as a former and thankfully retired high school Principal of over 30 years and the father and advocate of a son with severe special needs resulting from a 25 minute oxygen deprivation in a near drowning.  Adam is non-verbal, non-ambulatory, spastic with numerous contractures and musculo-skeletal issues. He has no ability to speak. The issues are too numerous to enumerate.  He spent 8 years in special education programs at the school where I was the boss, whatever that may mean.  Also, these posts apply to education in the "going in reverse" U.S.A. where every child with special needs is guaranteed by law school services (free and appropriate) from age 3 until 22 (earlier if the student gets a diploma).  I know nothing about education in the countries of many of my readers, but am interested!
      Public schools are not accepting and welcoming places for students with severe special needs in many cases but there are exceptions.  In times of limited budgets, special needs kids drain dollars from the Advanced Placements students, from the arts, from the vocational programs, from sports and activities. The simple reason is that  IDEA  is a federal mandate along with its state counterpart programs.  A lack of funds is never legally an excuse to fail to provide the services of an IEP (Individual Education Program).  A lack of the same funds can  result in the discontinuance of an Advanced Placement Calculus course or a football program (often viewed in a community as more important than any single child or group of children).  So an innate tension is established.

    Public schools are not accepting and welcoming places for students with severe special needs, especially on the high school level.  On the elementary school level, it is understood that students arrive at many learning levels with many learning styles.  Given the buzz words of "inclusion" and "in the least restrictive environment"; kids with severe needs are often included in regular classes with aides for a portion of the day.  Unless they are "screamers" or "melt-downers" or "stimmers", most elementary staff welcome these students and really believe in inclusive education.  Elementary school teachers are taught to teach kids and are not subject matter specialists.
     On the middle and high school levels, regular education staff are specialists in math, English and a sordid variety of somewhat boring subjects in the modern world.  Students with moderate to severe special needs who are included are a major annoyance and there is evidence of obvious displeasure and discomfort.  High School teachers were born and bred to teach math and not people.  They were born and bred to measure achievement against objective standards.  They are evaluated upon the academic success of their students. Our students with severe special needs who are "included" in a class or two for the sake of "inclusion" and being with "normal" kids will detract from those measures of performance.  High school can be hell...
     Public schools are not accepting and welcoming places for students with severe special needs, because they take time...time away from regular education teachers to attend meetings, time to modify curriculum and measurement methodology, time to tier instruction.  For students with severe special needs which are manifest in behavioral issues, they require special behavioral plans and functional behavioral assessments and can't routinely be excluded from school.  They are treated as different and difference is intolerable on the high school level.  They are bullied significantly to a greater degree than the "regulars", which means that staff need to intervene and stop lecturing on quadratic equations for a moment.  It's often easier not to deal....
     Public schools are not accepting and welcoming places for students with severe special needs because they are entitled to sports and after school activities with the transportation and assistance modifications which they have during the regular day.  This costs money, planning and convenience.  It implies that coaches and activity providers be trained learning about the needs of students who are atypical.  They also need to be coached on acceptance and how to embrace difference.

     Public schools are not accepting and welcoming places for students with severe special needs because they are entitled to summer programs according to an IEP, and not a predetermined summer program which is the same for all, for the same period of time; rather they are entitled to a summer program based upon their particular special needs if there is the possibility of regression of skills.
     Public schools are not accepting and welcoming places for students with severe special needs because their parents are usually annoying and demand progress reports, daily logs of their child's activities, and just frankly, are never satisfied.  Special Education staff are professionals (trained and bred) so they must know better than a parent who live with disability without respite. Ya think so ?
     Public schools are not accepting and welcoming places for students with severe special needs because related services like physical therapy, speech therapy and occupational therapy have outmoded models of service delivery which have remained unchanged for 50 years and often do more harm than good.  
     Public schools are not accepting and welcoming places for students with severe special needs because staff in special education positions are generalists and have little in depth knowledge of autism, cerebral palsy, muscular dystrophy, traumatic brain injuries, genetic and metabolic factors, on on.  They are trained to remediate language arts and math delays.  What's  ABA (Applied Behavior Analysis)?
      Public schools are not accepting and welcoming places for students with severe special needs because everyone knows that if you can't keep a parent happy, a child safe, and demonstrate progress, the option is another day placement ($70,000) or residential placement ($250,000).  It is never about what is best for the special needs student but rather about the budget and what may be lost or about an increase in the tax rate.  The amazing fact is that the  advanced placement programs and football never suffer and the superintendent's salary bounds upward in an unconscionable spiral.
     Public schools are not accepting and welcoming places for students with severe special needs because our children may have left placements in boiler rooms and closets, but really have not.
     The series of blog posts will focus in depth on the blatant failures of school physical therapy, speech therapy and occupational therapy programs.  They will focus on school's keeping parents in the dark and away from after school and transportation requirements.  Posts will cover parent rights and how schools evade the requirements of IDEA, 504 and ADA.  They will cover every obstacle I have encountered in a good school system, with an adequate principal (me), faced with ensuring the severe special needs of his child were met in a way which was based on scientifically based remediation and therapies.  No, even my school, was not an accepting and welcoming place for students with severe special needs.
       There are exceptions and you may have found one.  The exceptions are  far fewer on the high school level.  I will address every issue with honesty and personal prejudice.  If there are issues which interest you that I have not included, please comment and I will follow up.  Please stay tuned for the trip on the little yellow school bus which is the high point of exclusion.  First topic will be the abject failure of school-based physical therapy for students with severely compromised bodies.


  1. Phil, Even though we have had to fight as well, you did make the school a better place for Carly. I remember in 7th grade there was a trip to The Big E. For some reason the transportation department didn't want to take Carly. I walked into the office and you said, "I hope you'll support me on this.". I never had any school official ask me that question. It was always me asking for support. Back to the trip: I didn't know there was an issue until you told me and you resolved it. Thank you for that. It takes a lot of vigilance. We got ABA for Carly and no one could deny it worked. Now, instead of an outside consultant, the district hired an inside person last year. Carly has one more year, and I am scared about what the future holds. She needs to be actively engaged every day - and we hope we can do that for her. My best to you, Sharon, Adam and Aimee.

  2. Thanks for the kind memory, Deb. Our salvation was always a wonderful paraprofessional that was linked to Adam for all his years...a life saver. The post school future is always scary and remains such for us. After our move, we check 3 day habs contracted by DDS and on our part it was a quick NO even if it allowed us a few hours of respite for a few days a week. So our reality is that Adam is with us and will's a safer, kinder place and protected from the world. My best to you and Carly...I hope the future unfolds in the way which is most caring and beneficial to all.

  3. That's an amazing insight into the public education system Phil. I considered a mainstream school for Chantel - but being a teacher realised that the curriculum didn't cater to her needs and support was low. Opted for a special school which was a wonderful and happy environment for her for 15 years. Felt very anxious about her leaving. However she adjusted well to an adult day option program and again I am very pleased with the outcome. Royce travelled a similiar path. I feel I have been very lucky and 'taken care of' when I hear some of the other stories from people's experiences.

  4. Phil,
    I'm glad you continue to speakup and share information related to special needs in our schools. I am sure you made a huge difference in others' lives within your school. It must have been very frustrating to be within the system and to still have to fight for Adam's rights.

  5. This was an eye opener Phil. I have done extensive research on the history of the disabled, dating back to the late 1800's, and it's mind blowing that even with the "progress" it's still so backwards. I have always said that I don't agree with forcing inclusion classes on to teachers who have regular classes. When I was working in a hair salon in my past life (hair designing was my first passion but the schedule was too much being a single mom with a kid with disabilities) a client was blabbing to the colorist about how she was being forced to "teach" (she used air quotes when she said this word) this kid and how it took so much time away from her other normal kids (her words). She also lamented over how she would now have all this extra work to do in order to follow the guidelines that she never even signed up to follow.I sincerely doubt that she, and her colleagues who agreed with her, would be effective with kids like ours.
    I can't hold it against her, though. Not everyone is cut out for teaching or caring for folks with disabilities (although she didn't have to be so hateful about it). That's why I really fear for the students who are forced into inclusion classes forced on to teachers that really don't want to do it.
    I stand firm on the notion that education is key. I've heard so many people say that they don't know what to say or do. If they are shown what to say & do, they may be able to do it. One never knows till they try!
    Your list is daunting and scary. It makes my heart palpitate. It makes me feel like nothing can be done to change it, ever. But I heard something today. This lady was trying to do something positive in her community and was asked if she thought there was too much that needed to be fixed & didn't she think she was trying to do something impossible. She said something to the effect of the following: "I'm only trying to clean up my little corner of the world. If someone else cleans up their little corner, then eventually the corners will meet." This is how I try to look at things. Otherwise, I will just give up!!

  6. Thank you!! It is refreshing to hear this from a school administrator. I am a parent of two severely autistic sons, living in Texas. if you want a recipe for a disgruntled parent, that is certainly it!
    My boys are still in elementary school, so I can imagine things will get worse. They are semi-toilet trained, occasional "shriekers", constantly stim, and determined to eat any art supply or hand sanitizer they can get to. But also can sing any song they've heard once, show affection (occasionally, but not usually at school) and understand more than most people might expect. It is such a relief to me to hear another person say the truth about public schools and severely disabled kids. I tend to think it is just Texas, but I guess it is wide-spread. Best wishes to you and your family. Glad to have found your blog.


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