Monday, 18 July 2016

When The Educators Need To Be Educated


I have been struggling over the last 6 weeks, trying to find a way to describe what has been going on with Jack.  I am not someone who jumps on my blog and bashes people.  I also have been repeatedly thanked for my "grace" by the school system throughout this situation, and I do want to maintain my goal of taking the high road.  However I do try to be honest about our experiences as a family.  And I do want to share what we have been going through.

Before I do, I have a confession.  When Jack first started school, and we were successful in keeping him mainstreamed for several years, I really didn’t understand what all of these other parents were talking about.  We struggled in getting Jack the help he needed because he was labeled “high functioning”, but with the help of an advocate, we were able to work through that, or at least to an acceptable extent.  So why were so many parents of special needs kids calling public school a nightmare?  Fighting so hard with staff? 

All it took was one bad experience.  As a special needs mom, my children have attended 8 different elementary schools, (and they are only 6 and 9) not because of problems, but because different programs are just housed in different places.  For the most part, we have had completely positive experiences.  Even Jack’s initial elementary school, which has a reputation for being particularly difficult on special needs families, was over all very supportive.  When he was moved to another program this January, it was not because he was failing to meet or make progress towards his IEP goals, it was because the teachers found he made the most progress in a small group setting, which this new program was said to offer for all core curriculum.  And to be fair, the program did “offer” this. 

I wish I could pinpoint what happened.  Where it all went wrong.  All I can really say is that the new school was not prepared to handle my son.  That my son went from making progress in all IEP goals in a mainstream program (since pre K), to a “more supportive environment” and his progress completely tanked, per their report.  I say per their report, because we saw a very different child at home, one who made great strides in his ABA goals, one who continued to be able to socialize with his friends from his old school with some support, one who successfully participated in an adaptive team sport, and enjoyed it!  In school?  I was told that he was not “capable” of “being with his peers”.  He was fully pulled out for all academics, and often pulled out of the pull out (to a one on one setting instead of small group).  He was isolated- not able to eat in the cafeteria at lunch, something that was NEVER an issue, not even for snack time in pre-k.  Something that my 6 year old “severely autistic” son does daily at his school, because he is supported.  His IEP progress report in June showed that he was not making adequate progress toward any IEP goals except....handwriting.  Which by the way has always been the bane of his existence.  No matter what justification was given to me, my opinion remains that the school did not want to deal with my son.  They did not like that he, as my husband so eloquently put it “upset the apple cart”.  This was a new, small program, and when I toured the school back in December I was shocked by how quiet the classroom was- my son is not quiet.  He is not naughty- but he is not quiet.  I think this was not appreciated by some of the staff.  I think his need to socialize and unfortunately disrupt some of these other children was resented.  I think that any and all possible behavioral issues were emphasized and examined under a microscope.  When your child is at home on the weekend and you ask him to go to his room and do something and suddenly for the first time in his life he responds with “is that a threat?”, it is clear that someone has been asking him that same question. 

I am not a mom who puts her son up on a pedestal.  I have always advocated for more services for him, I have recognized his struggles and taken action as much as humanly possible.  That being said, this spring was the first time I have ever experienced the feeling of my son seeming to be targeted.  Things that he would say out of frustration in his old school setting were interpreted in the worst possible way at the new school and perceived as actual threats.  And while he definitely was trying to express an emotion or frustration, it was never taken into account that he was scripting, something he has done since the age of 18 months old.  He pulls statements from programs he has watched or books he has read, and puts them into his dialogue if it seems appropriate to his situation.  When he was younger it worked against him because he was using sophisticated vocabulary and after people heard that, their expectations of his intelligence became super high.  Now it works against him again because he is not just spewing facts anymore, but also trying to find a way to express his emotions, something that is very hard for many kids on the spectrum.  He chooses a quote that sounds threatening, and is reprimanded as though it was an independent thought.  Yes, it was inappropriate, I get that.  But was it meant in the spirit in which it was received?  Ummmm, no way.  I promise that my 8 year old is not likely to seek revenge on you, BUT he does like to watch My Little Pony, and they do say that in an episode….

I mean, when he gets upset at home and cries he says “tears run down his spiny cheeks”.  No, he does not have spiny cheeks, he is quoting from a book about a little porcupine that we read when he was two years old.  He is telling me “I am sad, so I am crying.”  And I get that, so I don’t look for whiskers, or god forbid quills!

I’m not suggesting he doesn’t have any behavioral issues, because he does.  As our children get older, they are not maturing at the rate of their peers, which SHOULD be a duh for all parties involved in their care, since they are “special educators”.  Our children’s atypical behavior, while it has not changed, does stick out more than it used to.  And in a new setting- they are penalized for it.  Inappropriately.  They are judged harshly, they are treated like “problems.” What I am saying is that while it’s not fair, and it’s not right, we as parents have to prepare ourselves for this eventuality.  It should not happen, but in a situation where someone does not know, or take the time to get to know our children, it is a distinct possibility.  We went to his most recent IEP meeting (last Thursday) and it was suggested by the central representative that he would be ok in a type II special education program (which means still housed in a mainstream school, with the opportunity to interact with typical peers, as opposed to a type I, which is a separate day school).  My response was this- he absolutely should have been fine- however after his and this family’s experiences this past spring, he needs time to recover. He needs to feel supported and have time build his self-esteem.  When you are treated like an "issue” in a setting where you used to feel accepted and even loved, it can be very damaging.  We are just now, in summer school, working through his tears each morning because he does not want to go back to school.

As a parent, this is not only heartbreaking, it is maddening.  I, as Jack’s mom, have been traumatized by this experience.  My level of trust in the school system has plummeted.  I am at risk of becoming “that mom.”  The one that feels the need to drop in for “surprise visits” to ensure my son isn’t locked in a closet somewhere.  The one who calls every time my son comes home saying something negative, to make sure everything is ok.  I do not want to be “that mom”.  I never was.  But my son has the right to an education in the least restrictive environment possible, and he has the right to expect fair treatment.  And without question, he was denied both of these things this past spring.  And he is my child who can talk to me!

At the  IEP meeting with his school back in May, something was said that I will never, as a special needs mom, forget.  In the presence of the least restrictive environment specialist, the school behavioral specialist, our IEP advocate, and Jack’s BCBA, we were told that this school’s program was there to support children with learning differences.  We were told that they were not “equipped to handle autism and all the support that is needed for autism.”  Our BCBA still brings this statement up frequently- as someone who has been in special education for over 20 years, she was shocked into silence herself.  I want to say this, for the record.  None of us are- equipped to handle autism when first we encounter it.  I can assure you that John and I were not equipped to handle autism.  And yet, here we are, doing it!  Autism is being diagnosed at a head spinning rate- a rate that is increasing each and every year.  If your school does not become equipped to handle autism, you will be doing a vast number of amazing children a horrible disservice.  My son is phenomenal- and he will be back in a mainstream school in the next few years god willing.  More education for mainstream educators is clearly needed, and needed quickly.  My son did not deserve to come away from this experience feeling like he was a problem.  And it will take years to get him past this.  Equip yourselves, because if you are supposed to help children with “learning challenges”, I can guarantee you will be seeing more children with autism in your program. 

 


 
 



 

 

 

 

10 comments:

  1. I'm so sorry to hear about your experiences. Our son was born almost 11 weeks early in the 1970s and almost died when he was 2 weeks old, saved by an operation when he weighed 2.5 lbs. As a result of his very difficult beginning plus some genetic factors he developed into a child on the autism spectrum (Asperger syndrome), with dyspraxia, ADHD and possibly dyslexia. He had major problems with his peer group, couldn't copy from the board, found handwriting a nightmare, had difficulties concentrating unless the topic was of particular interest etc.etc. School was extremely difficult, particularly secondary school, and when he left his self esteem was at rock bottom. However (and this is why I'm posting this) we focused at home on his love of detail, amazing powers of concentration on his special interests and love of machines and introduced him to computer programming. We allowed him to spend as much time as he wanted computer related stuff (provided it didn't impact on our family life) and he went on to study computing at university. He is now 40, still on the autism spectrum but a happy and fulfilled adult, living on his own (about 200 miles from us) in a house he paid for himself and working from home for a major computer company. He has never been unemployed, although we have had to help out at key times in his life because of his dislike of change and very poor organisational skills. The details about his life, the challenges we met and the reasons for our decisions can be found in my book shown below.
    Dr Charlotte Aldred, author of 'Different or Disabled? A Positive Approach to Parenting a Child on the Autism Spectrum'. www.CharlotteAldredBooks.com

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  2. I'm so sorry to hear about your experiences. Our son was born almost 11 weeks early in the 1970s and almost died when he was 2 weeks old, saved by an operation when he weighed 2.5 lbs. As a result of his very difficult beginning plus some genetic factors he developed into a child on the autism spectrum (Asperger syndrome), with dyspraxia, ADHD and possibly dyslexia. He had major problems with his peer group, couldn't copy from the board, found handwriting a nightmare, had difficulties concentrating unless the topic was of particular interest etc.etc. School was extremely difficult, particularly secondary school, and when he left his self esteem was at rock bottom. However (and this is why I'm posting this) we focused at home on his love of detail, amazing powers of concentration on his special interests and love of machines and introduced him to computer programming. We allowed him to spend as much time as he wanted computer related stuff (provided it didn't impact on our family life) and he went on to study computing at university. He is now 40, still on the autism spectrum but a happy and fulfilled adult, living on his own (about 200 miles from us) in a house he paid for himself and working from home for a major computer company. He has never been unemployed, although we have had to help out at key times in his life because of his dislike of change and very poor organisational skills. The details about his life, the challenges we met and the reasons for our decisions can be found in my book shown below.
    Dr Charlotte Aldred, author of 'Different or Disabled? A Positive Approach to Parenting a Child on the Autism Spectrum'. www.CharlotteAldredBooks.com

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  3. I too am sorry to hear the latest developments. I wish that our system and more of our educators "got it". I was and still am disheartened to know that so many don't get it- even the ones that are supposed to be advocating for their students. This struggle over what I felt to be right versus what the system thought was sufficient played a main role in my switch to general education. I surrendered to how hard it was to fight so hard for things I viewed as a given. As a parent, you don't have the option to surrender and I admire your strength, your courage and your poise as you advocate for what you know is right for your boys. I would like to go back to special education some day- I am not proud of having "given up", but I do what I can to advocate for students with IEPs in my role as gen ed.

    Keep your head up and if there's ever anything I can do, you know how to find me! Robin

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  4. Dr Charlotte:

    Thank you for sharing Different or Disabled.

    I would probably recommend that the "Educators who need to be re-educated" read the chapters on Language and Communication and think, really think, about how this applies to Jack and to other students they might know and connect to. I think also the Change chapter could help them.

    Glad that they admitted they were not equipped to handle [specific problem/practice].

    Yes, the home Jack is probably the real and the supported one.

    "Is that a threat?" And I would remind them "This is a special education classroom not a terrorist cell". And, yes, Jack has been terrorised.

    "Now it works against him again because he is not just spewing facts anymore, but also trying to find a way to express his emotions, something that is very hard for many kids on the spectrum. He chooses a quote that sounds threatening, and is reprimanded as though it was an independent thought. Yes, it was inappropriate, I get that. But was it meant in the spirit in which it was received? Ummmm, no way. I promise that my 8 year old is not likely to seek revenge on you, BUT he does like to watch My Little Pony, and they do say that in an episode…. - See more at: http://jackandnatesmom.blogspot.com.au/2016/07/when-educators-need-to-be-educated.html#sthash.SUKDLbHo.dpuf"

    I can see the summer school people studying the episodes.

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  5. I was rocked by this.
    My son is going into grade three. He has always been in a mainstream class and his school especially his principal has always been rock solidly in his corner.

    I am so worried this will not always be the case. His principal has left and he will be with a new teacher this year after having the most wonderful teacher for two years in a row. My blessing is that I know his teacher handpicked his next teacher and also suggested class mates he works well with.

    I know so often children are failed by the school system.
    This post reminds me that despite my previous experience, despite my advocating not only could his education be at risk but his self esteem and all the huge gains he has made because of a system that still hasn't learned the true meaning of inclusion, support and individual needs.

    I take heart that parents are becoming better educated in their child's rights, and better connected to each other providing a better base to advocate and demand changes.

    ReplyDelete
  6. I was rocked by this.
    My son is going into grade three. He has always been in a mainstream class and his school especially his principal has always been rock solidly in his corner.

    I am so worried this will not always be the case. His principal has left and he will be with a new teacher this year after having the most wonderful teacher for two years in a row. My blessing is that I know his teacher handpicked his next teacher and also suggested class mates he works well with.

    I know so often children are failed by the school system.
    This post reminds me that despite my previous experience, despite my advocating not only could his education be at risk but his self esteem and all the huge gains he has made because of a system that still hasn't learned the true meaning of inclusion, support and individual needs.

    I take heart that parents are becoming better educated in their child's rights, and better connected to each other providing a better base to advocate and demand changes.

    ReplyDelete
  7. I was rocked by this.
    My son is going into grade three. He has always been in a mainstream class and his school especially his principal has always been rock solidly in his corner.

    I am so worried this will not always be the case. His principal has left and he will be with a new teacher this year after having the most wonderful teacher for two years in a row. My blessing is that I know his teacher handpicked his next teacher and also suggested class mates he works well with.

    I know so often children are failed by the school system.
    This post reminds me that despite my previous experience, despite my advocating not only could his education be at risk but his self esteem and all the huge gains he has made because of a system that still hasn't learned the true meaning of inclusion, support and individual needs.

    I take heart that parents are becoming better educated in their child's rights, and better connected to each other providing a better base to advocate and demand changes.

    ReplyDelete
  8. ALL THANKS TO DR WILLIAMS FOR THE GREAT DEED HE HAVE DONE FOR MY DAUGHTER?
    My daughter suffered from autism for more than 2 years which we started experiencing in her when she turned 1 year and 5 months we all thought it will end but got even worse as days went by. We tried all several treatments and therapy prescribed by various doctors we met but to no avail, she lost total concentration and always complain of sensitivity to sound . She usually tells me she haves poor eyes contact. This were steady disorder that disrupted her entire life, even at night she slept less because of this.It was during a casual conversation with a friend that i learned about Dr Williams herbal medicine I was able to contact him on his email address. and give him all the necessary information that he needed,few day later he sent me the herbal portion and his medicine was able to restore her back to normal and she is very okay now without any side effects whatsoever. If you have autism, do not hesitate to contact him on drwilliams098765@gmail.com for advice and for his product. I hope this also helps someone out there

    ReplyDelete
    Replies
    1. thanks Jessica for the good recommendation to Dr Williams with his herb my son is now also free from autism am really so grateful .

      Delete
  9. This comment has been removed by the author.

    ReplyDelete