Shame on Me and Shame on Us

A lot of attention has been given to the recent ruling at the Supreme Court of Canada.  It recently ruled that school boards in Canada must provide adequate services to children with disabilities and cannot justify not providing those services due to budgetary pressures.

From the Supreme Court Decision:

This declaration of purpose is an acknowledgment by the government that the reason all children are entitled to an education, is because a healthy democracy and economy require their educated contribution.  Adequate special education, therefore, is not a dispensable luxury.  For those with severe learning disabilities, it is the ramp that provides access to the statutory commitment to education made to all children in British Columbia.   

The synopsis of this ruling is that Jeffrey Moore had dyslexia, and the school board did not provide adequate help.  As a result, Moore went to a private school.  The SCC is awarding his family full costs, and the school board has to pay.  It will be interesting to see what implications this has for ABA provision in Ontario schools.

The Globe and Mail does not concur:

The Supreme Court of Canada has opened a Pandora’s box for public school boards by finding that a British Columbia school district discriminated against a dyslexic child when, during a financial crisis, it closed a special-education centre that provided him intensive help in learning to read. From here on, schools, school boards or provinces could be forced to bleed other programs to meet court-ordered educational standards for special-needs students.

And it concludes:

It makes the court’s unanimous ruling more out of touch that the boy’s public education unfolded between 1991 and 1994, during and after a recession marked by across-the-board restraint, and finally, the overcoming of Canada’s deficit. Many political choices went into those years, and similar choices await today; governments, accountable to voters, should be the ones making those choices. The court overstepped its authority.

I'm ashamed of us for thinking this way.  This is the old mantra, it costs too much, and we can't afford it.  Yet, as I have written before, no one seems to mind that we spent billions of dollars at the end of someone's life in hospital instead of acknowledging death is imminent... no one would allow that.  So why do we allow school boards to write children off because of cost?

Most of all, I'm ashamed of myself.  Ashamed that, without children on the spectrum, I would have agreed with the article.  Shame on me.

Why is this decision such a victory?  Another quote from the Toronto Star, on education in Ontario:

Denise Martins, the principal at Danforth Collegiate, said the school is doing the best it can based upon the staffing provided to us. The school’s support program includes one full-time and one part-time teacher, a child and youth worker and special needs assistant, and a social skills class runs over the lunch hour.

But Ford says it’s not the school or teachers that are to blame; she faults the board for not providing adequate resources. She says her son is being bullied by other students.

Other parents echo Ford’s frustrations with Ontario’s school system: one mother says she stopped working because of daily calls to pick up her son; another spent the night washing ink off her Grade 9 son after he was accosted by older boys; some parents decide to transfer their children to private school, spending thousands in tuition.

Here's the reason why school boards should not be able to hide behind budget constraints... as quoted by Ms. Martins.  They are "doing the best based on the staffing provided to us."  That's a cop-out.  This SCC decision says that children are entitled to an education, and "the school board's best" may not be adequate anymore.

This decision does not reverse Auton, but it least it gives us hope for children getting what they need for a real education in school.

 

Two Phrases You Should Never Say

 

There are two phrases a I hear a lot as an autism parent that I am writing to tell you - don't say them.  If you say one phrase I'm about to describe, you'll just look silly, and if you say the other, you will be unkind.

Phrase One - "We're all a little autistic."

Sorry there slick.  We're just not.  There are "autistic like" behaviours people can have, because autism is defined by behaviour.  But being socially awkward or a little OCD about where you like to sit doesn't mean you "have a little bit of autism".  It's like saying to a clinically depressed person that "we're all depressed" when we sometimes feel sad, or saying to a person diagnosed with terminal cancer that "we all have a little bit of cancer" (which is not untrue, it's just that our immune system zapped the cells before they grew into a nasty tumour).

Diagnostics exist for a reason, and based on said diagnostics, you either have autism or you don't.  To say otherwise is ludricrous.

By definition, enough autistic behaviours make you have autism.  Do not try to "normalize" what for millions of people is a very difficult disability with which to live.

Phase Two - "I don't know how you do it."

When I hear this, here is how it translate in my brain...

"I am so glad this isn't my life."

  

Unfornately this only serves to remind me that it is my life, even if it's not yours.

The reality is we are all very capable of dealing with what life throws at us if we are forced to do so.  Circumstances shape our behaviour in a way we can't always imagine.  As a parent who loves his children, I have two choices, either deal with it and do the very best I can, or give them up to child services and hope for the best.  Since I could never do the latter, I am left with the former.

We do it because we have no choice.  That doesn't make us heroes.  It makes us human.

 

Speech Is Not Language

Perhaps one of my greatest frustrations with A has been her inability, even after years of therapy, to gain functional speech.  She has made a lot of progress, from nothing to sounds and many approximations.  But without augmentative communication in the form of an iPad, she is very difficult to understand.

It was cute to see tonight while she was cleaning up, she picked up a shape puzzle and put the pieces all in, and Mom and I listened ... oh so quietly, if we listened, we could hear her verbally label all of the shapes ... oval, star, square, rectangle... but even we had to listen so hard to make it out.

Many people look at A and have low expectations of her because she cannot speak.  A uses this to her advantage to get out of doing things she'd rather not do.  The assumption is that if she cannot speak she has nothing she wants to say. 

But, of course, nothing is further from the truth... there have been several times in the past where A has looked at me, said something I could not make out, and then was frustrated she had to go to her iPad to tell me something that may or may not be quite what she was trying to communicate.

In many journals, outcome in autism is associated with the "acquisition of language".  Clinicians will often say, "does A have language?"  But that is not what they are really saying.  They are really saying does she have verbal speech that is functional to communicate.  Language and speech are commonly related, but they are not the same.

A child like A might has language using augmentative systems (eventually we hope she will simply write her thoughts and have them read with voice output).  She communicates with a voice output system (Proloque2Go) that works like an electronic version of PECS, but with much better organization.

A child with speech may still not have functional language.  Some children who are fluently verbal still use PECS or other augmentative systems because their speech is not functional.  It is clear speech, but does not make sense, or communicate the intent of the speaker.  A child who can repeat anything you say but say nothing spontaneously based on internal motivation has speech, but not language.

My son T has good speech and language, though he struggles with a lot of jargon and some delayed echolalia.  Sometimes he drifts into "jibber jabbering" where very little communication occurs.  He struggles to express his thoughts sometimes.  But I have seen other children who use speech more like a "stream of consciousness" where almost all thoughts are being spoken, with little clarity of communication intent.

For A, what makes me feel hope is the increasing number of adults with autism who are non-verbal, yet are leading meaningful lives with a degree of independence, such as Carly Fleischmann, Jeremy Sicile-Kira, or the men (Tracy and Larry) of Wretches & Jabbers (a highly recommended film).

My sense is there is a sub-type of autism, and I think A has it, along with Carly and Jeremy and the men from W&J, that causes severe apraxia of speech.  Jeremy, Carly, Tracy and Larry have all said their bodies do not co-operate with their desires - they don't move the way they direct them to move, and they struggle with intense sensory dysfunction.  Having it explained makes me feel both happy to have understood A better, but also sad in knowing what she struggles to do in order to interact with her world.

I think Jeremy says it best...

"Good things  about my autism is my ability to see beautiful colors in everything I look at. I see bright colors even in  dust."

I have often wondered what A sees when she looks at things.  I wonder if she sees bright colours too. 

 

This Could Be You

Colleen Cunningham, a mother in Sarnia, is facing my greatest fear.  Her son Nathan, now 21, has cerebral palsy and has severe disability.  He requires 24 hour care.  You can read more about her story here.

Based on what I can glean from this article, Colleen is alone, aging, and her own health is failing.  Her son will never be independent.  But there is no room for him in a group home.  Colleen's desperate solution is to abandon him in respite care, forcing the government to intervene in his care.

My heart aches for this mother.  No one wants to abandon their children, and the irony is that Nathan could probably remain at home if Mom had some supports, but there is "no money" in agency budgets.  Other support services in Ontario, such as "Special Services at Home", have been frozen since 2007 or earlier.  You can apply for such services and be awarded money, but you are wait listed.  As families give up their funding, the funding is clawed back by the government.  Why we are paying bureaucrats to collect names and determine pretend grant amounts while people with disabilities get no support is beyond me.

Do you have children with disabilities?  This could be you someday.

Children with severe autism are transitioned into a school system that is not designed for their needs, and inclusion zealots are happy we do this.  Inclusion is cheaper and better for the child, according to them.

Here is the harsh reality for many children with severe autism.  While they are included in classrooms, they may, if they are lucky, meet some children in schools who are willing to be their "friends".  I don't discount how happy this will make some parents, including me.  But at age 21, those elementary school friends are long gone and are probably replaced by support workers.  Inclusion is a happy place for the time, but that friendship is temporary and does not help the child gain long-term skills needed for independent living.  My own daughter A has friends close to her age, but it is not an even relationship.  It takes a special person to be friends with A, and as A ages and becomes developmentally further behind (at least socially), these special people will become harder to find.

School is a place for academic learning and socialization.  Yet very few schools have any formal teaching for socialization because the vast majority of children come to school with basic skills and learn the ropes as they go.  For many kids with autism, academic skills beyond literacy, writing and numeracy are not very important.  Life skills, or adaptive skills, are much more important.  I would rather spend a day teaching A how to use a public washroom then say teaching her about native Canadian villages.  But schools aren't designed to teach kids about using public washrooms, because most children don't need special training to learn this skill.

Parents, ask yourselves - when school is done at 21, are you comfortable knowing your child learned all they could to be as independent as possible?  If not, in my opinion, time was wasted.  Because in the end, the responsibility for the child falls back to you.  There is no schooling after age 21 in most jurisdictions, and in Ontario at least, getting into a group home is no easy task.

I admire parents who say they "accept the autism" and "just enjoy their children".  I think sometimes parents need to let kids be kids, disability or not.  But we also have a duty to our children, and for our own sanity, to prepare our children to be independent.  To me, that means making the most of every opportunity, and it means the public school system is no place for A.

Early intervention is touted as a way to save money by "teaching children how to learn" and allowing them to achieve "average functioning".  Yet very few children do so.  In Ontario's IBI program, the proportion of children meeting average functioning is only 11% of discharges.  There are also no studies indicating if children in this program retain their level of functioning after they enter the school system.  In other words, IBI gets them to a certain level of functioning, but we don't know if they can maintain that level once the intensive supports are removed in a school setting.

I don't want Colleen's story to be mine in 16 or so years from now.  Do you?

Inclusion is no solution - children need life skill teaching from discharge.  It's too bad Ontario's public education model will never put the individual's needs beyond that of its employees.  Shame on us for letting it happen.

The other shoe drops...

I've been awfully quiet of late.  Perhaps for some of you that's a good thing.

For many parents, once an autism diagnosis is given they have to ask themselves a very difficult question:  should we have more children?  This is a tough question to answer.  The reason why it's asked is because autism has a strong genetic basis, and based on recent research the risk of having another affected child is 25%.  Some parents might be willing to play these odds... a 75% win rate is pretty good, after all.

Having unaffected siblings is attractive for so many reasons.  As a parent, you have a special needs child but you also have typical children, which can somewhat dampen the heartache of having a child with autism.  Selfishly, this means you can experience having a typical parent-child relationship.  Some days, you can leave your special needs child at home and experience life as a "typical family" (I'm sorry if this offends some of you, but I am writing how I feel and this is the truth.)

Although I would never choose to expect or burden T with taking care of A when we die, I would hope that he would love her enough to do so.  So in that way, having a typical sibling is very comforting.

Except he isn't.

We have been concerned with T for several months now, on and off.  He has always lined up his toys, but his social communication was becoming more and more inappropriate.  He never greeted us, didn't use "mommy and daddy" without prompting, and had a lot of delayed echolalia.  Add in his difficulty with change, transition and insistence on sameness, and blammo, you have... autism.  Again.

Luckily, he is mild and will be getting the "PDD-NOS" designation.  He is fully verbal and has some great social skills.  He's a great kid and I don't love him any less, but I grieve for him because I know his life will be harder... and for us too. 

I thought this would be easier than the first time around, but it's not.  I'm still angry.  I'm still sad.  But it is what it is.

"Happiness can only exist in acceptance."
   - George Orwell 

Toronto Board of Education and Ontario's Double Standard

The Toronto District School Board has decided to follow thorough on its plans to eliminate 87% of Education Assistants.  Over 400 education assistants will be laid off, and over 400 early childhood educators (ECEs) will be hired to replace them.  ECEs are required by Ontario law to deliver the new full-day kindergarten program.

Don't feel too bad for the educational assistants though.  The government has offered to hire them as ECEs if they will complete their ECE training at a local college within two years.  

I have posted before on how unfair this is to special needs students.  Don't be fooled - the lack of assistance for students will result in more students being sent home or attending for partial school days only.  Parents will have to fight more than ever for services that should be provided to them freely.

If that is not unfair enough, consider the double standard the government applies to early childhood education and special education.  Apparently, to work with four and five year old children in an educational setting, you need a one or two year diploma to qualify you to deliver this education.

Colleges in Ontario have offered a good program in Autism and Behavioural Science for years now, yet no educational staff who work with children with autism require this diploma.  Tell me why an untrained educational assistant is qualified to work with children with autism, yet that same EA requires a year or more of training to work with young, typical children?

There is no choice for children with autism in Ontario.  Either the child is home-schooled (partially or full-time), the parents are on the hook for the full cost of their education, or parents must flee the jurisdiction.  Don't worry though, little Jonny is getting a fully trained early childhood educator and can attend school all day.  It'll save his parents a bundle on child care.  What's not to like about that?  

Latest Toronto School Board Plan Proves No Accountability in Special Education

The Toronto District School Board is considering a proposal to balance its budget by reducing educational assistants by 87% (reducing 493.5 full time equivalent positions to just 63.5 positions).  The stated reasoning is to hire 400 early childhood educators to fulfill the board's requirements in implementing full-day learning for four and five year old students.

Special education funding is very seriously misused in Ontario.  Although money is allocated for special education, it is given to each school board to do with as it pleases (a fact stated by an education official in the above article:

A spokesman for the education ministry, Grahame Rivers, said funding for the TDSB has increased since 2003.

“Ultimately, it is the TDSB’s decision how to best allocate resources in Toronto schools,” he said.

 Funding is increasing, but funding does not follow each student.  It is allocated based on the needs of the board.  In this way, "special education funding" is a joke - there is no accountability in the way the funds are spent.  Why even bother having distinct funding streams if the boards can spend any way they please?


How is it fair that hundreds of students with special needs are having support staff taken away so that hundreds of four and five year old children have a longer school day?  Schools will do what they can, but the result of this change will result in most students not attending school or attending with reduced hours.  Luckily A is not yet in school, but if she were (and she is old enough to go into early years education) there is no way she could attend without support and actually learn anything.


Some of you may disagree with me on this, but I don't even believe full-day early learning is needed.  I believe it is a back-door way of getting free childcare in Ontario so that parents get a free ride.


Interestingly, a study in the United States on their Head Start program (which includes pre-school education, nutrition and other services for low income families) states that:

The benefits of access to Head Start at age four are largely absent by 1st grade for the program population as a whole.

Obviously we can't compare this directly to Ontario's program since in the United States kindergarten is not full-time.  However, early learning at the four-year old level does not appear (in this study) to influence academic trajectory.

Ironically, parents who try to assist the schools by trying to provide staff of their own are re-buffed and educational assistants will grieve any attempt to put in staff because that person is taking the job away from a unionized EA.  A parent cannot put their own staff in place to help their child, but they also cannot rely on the school to do so either, especially with so few EAs available (now just 64 education assistants for a city of almost three million people).


So for parents of typical children who are four and five:

• They pay taxes
• Both parents can work with free child-care, a.k.a. full day learning
• Extra income = more opportunities
• And if you're in Toronto... special academy schools for kids in music and leadership

For parent of children with special needs:

• They pay taxes
• Their children must attend fewer hours or not at all
• One parent must remain home to home-school or be around when the school ejects the student, or must work full-time to pay for private education
• Parents cannot pay for an EA themselves even if they have the means due to union grievances
• The dollars spent per child for regular children are not refunded to them - they pay the same tax for less service

In short, if you are a regular kid, the system works.  If you're not, you're screwed.

Fairness is not when everyone gets the same thing.  It's when everyone gets what they need to be successful.  This isn't fairness.  It's time for special education funding to follow the children they are to fund.

I feel sorry for the parents of kids in Toronto.

Great Entertainment, Poor Reality

The new drama Touch starring Kiefer Sutherland is about a boy who, although autistic, has the ability to manipulate numbers, see patterns, and appears to be able to predict the future.

This makes for great entertainment but exacerbates the stereotypes of autism and autism reality.  At least the boy is non-verbal - this is a rarity in depiction of autism although it will be interesting to see how they get him to communicate.

When we first found out A has autism, we ourselves thought this meant she would have an extraordinary gift in some area.  This is called savantism, and it is actually very rare.  


Jacob, the protagonist, is actually a prodigious savant.  The different between regular savants and prodigious savants is that prodigious savants have a skill that would be considered unusually amazing even in a person without developmental disability.  This condition is even rarer (in the above article, 50 people in the whole world).


Good entertainment, but bad for educating others about autism reality.  I don't suppose people really want to watch Fly Away anyway.  Too bad - that is much closer to reality.

 

Much Ado About the DSM-5

There has been much discussion lately, both in the blog-sphere and in some on-line news feeds about the upcoming changes to the Diagnostic and Statistical Manual Revision 5 (DSM5).  This guide, produced by the American Psychological Association, is used to diagnose disorders that are primarily behavioural, or that have no known cause with specific diagnostic tests.  There is no known blood test for depression, for example - you have it if you exhibit certain behaviours in a specific way.


Autism is defined in the DSM5, and the definition is changing.  Currently, Autism Spectrum Disorder refers to any one of three conditions:  "classic" autism, PDD-NOS, and Asperger's Syndrome.  A good definition of autism and PDD-NOS is here and it gives good examples for the uninitiated.


With Asperger's Syndrome, cognitive and language development, as well as daily living skills, are unimpaired.  With Asperger's Syndrome, the primary deficit is language as it is used for social purposes.  This includes social spoken language and non-verbal cues.  Asperger's Syndrome also includes repetitive behaviours but these tend more toward intensive interests or routines with no function rather than stereotypies (it is more likely you will see a child obsessed with dinosaurs and needs to go home a certain way over hand flapping, for example).


This triad of disorders is well established and most autism services are based on these diagnoses.  The DSM5 purports to eliminate these three disorders and replace it with a single diagnosis:   Autism Spectrum Disorder.


This new label has many concerned because it may cause several people who presently have autism to fall off the spectrum into a new diagnostic category.  This isn't a bad thing in itself, except that once identified with a condition, it is difficult to let that go when nothing has changed except the DSM manual.  Further, and more importantly, legislation is notoriously slow in catching up with realities and services will be denied to people who previously would be eligible.


Concern has come in the media not surprisingly from people concerned with the higher functioning end of the spectrum (Asperger's and PDD-NOS).  These individuals may revert to Social Communication Disorder if they lack many repetitive behaviours, whereas before it would have been autism.


Concern has also come from the more silent side of the spectrum, people who have autistic disorder but also intellectual disability, which comprises a sizable portion of the people with full blown autism.  Because of the phrase that ASD "cannot be accounted for by general developmental delays", there is concern people with autistic disorder will revert to Intellectual Development Disorder.


The authors of the DSM-5 believe these changes will enhance the specificity of the diagnosis.  I don't disagree, but concern is primarily around (a) identification with a disorder and (b) services associated with a disorder.


One might think the easiest way to solve this problem is just to extend current autism services to those now qualifying for social communication disorder (SCD) or intellectual development disorder (IDD).  The problem with this, of course, is that by re-classifying autism and spreading existing ASD over these broader categories is that there will be many people with SCD and IDD who were never diagnosed with autism and legislators will be loath to increase costs by increasing services for now what is a much larger group of people.  SCD is a new diagnosis and appears to be designed to catch people who fall out of ASD so at least they have "some label".


This will put enormous pressure on clinicians to give an ASD diagnosis when SCD or IDD is warranted, especially when an ASD diagnosis was indicated on the DSM-IV.  In short, the muddy waters will be worse than before.


Personally I feel the better approach would have been to combine autistic disorder with PDD-NOS as "Autism" and leave Asperger's Syndrome alone, combining the two under "Autism Spectrum Disorder".  It is grossly unfair to millions of people who presently have autism to be re-classified as IDD alone.  Similarly, I sympathesize with people who have supports with Asperger's Syndrome but now do not with SCD.


I think A will remain diagnostically ASD, but now that language impairment is removed from the autism criteria as well, she would have co-morbid Language Impairment as defined by the DSM-5.


Watch for a little chaos in 2013.  

What is your life worth?

I am generally not a fan of re-printing material verbatim from other locations on the web, or re-hashing a discussion to which I may simply give a link.  But in this case, I will make an exception because it is so important it deserves an exception.

Amelia is a little girl with Wolf-Hirsch-horn syndrome.  You can read her story here.

The short version of her story is that she needs a kidney transplant, and this surgery is potentially dangerous due to potential brain damage.  The problem is that the attending physician does not believe Amelia should have the surgery because she is "mentally retarded".  I am not sure of all of the governmental rules of organ donation in the United States but it appears your IQ and adaptive functioning are enough to condemn you to death if you need a new organ.

Keep in mind that by definition 2% of the population is "mentally retarded" because this diagnosis is based on cognitive ability combined with adaptive behaviour (ability to communicate, socialize, and take care of one's self) relative to the rest of the population.  By definition, 2% of the population is always mentally retarded.  We can get collectively smarter or better at being independent, or collectively less smart and less independent, and 2% of us will still be "mentally retarded".  In other words, this diagnosis is not criterion based (if can't do X, then they are "mentally retarded")!


The doctor's response was bad enough, but the social worker's response was even more appalling.  She was in the family interview to try to convince the family to give up, because hey, Amelia won't go far in life anyway, and when she needs yet another kidney in 10 years, Amelia's parents may not even be around to take care of her.


Really?  That's the value we put on a life?  What a slippery slope we have started.  Mentally retarded today, perhaps tomorrow the elderly, or the low class factory worker.  In fact, why not simply ration all health care based on our usefulness to society and our potential measure of quality of life?  It's well known in Canada, for example, that people aged 65 years or higher cost double the annual health bill of people under 65, and people 75 and older double the 65-year old people.  Easy way to save money - if you are 65 or older, pay your own way or suffer because hey, you might need more surgery later and what are you going to do with your life anyway?  You're 65!


If anyone spouted off this nonsense they would be laughed off or lynched with extreme prejudice.  But apparently my logic does not apply to "mentally retarded" people at the Children's Hospital of Philadelphia.

New beginnings

“Every day is a new beginning. Treat it that way. Stay away from what might have been, and look at what can be.”

"Today's decisions are tomorrow's realities."
- Marsha Petri Sue

As we enter 2012, I am trying to keep Marsha's words in mind.  Our long-time senior therapist has resigned to pursue a career at the local regional provider and we are adjusting to the change.

One of the traps I am trying to avoid is "have we done enough?"  Years from now, like many parents, I will look back and ask if we did enough intervention with A to try to ameliorate her autism.  The harder we work now, the easier later will become.

Parents of a newly diagnosed child desperately seek a way to help their child "recover" from autism, a loaded phrase, but essentially a phrase meaning their child achieves average functioning in most areas.  The success of many children is still a minority - very few children meet this milestone.  I am learning to focus less on recovery as a goal and instead look at how far we have come, and how far A has come relative to most others with autism.


Perhaps my biggest disappointment is A's inability to develop functional spoken language, despite trying everything.  She has some words, but her articulation is very unclear.  She is able to communicate well with her iPad and for this I am very thankful, but it is still not the same.  In fact, I have had people comment that if not for the iPad they might have trouble detecting her autism as easily.


Looking back, I have to be content that we did everything "right", and the present reality is best outcome for us...

• She was diagnosed at 22 months
• ABA began at 22 months
• Funded EIBI began at 30 months
• Tried PROMPT, intensive speech therapy for hours

So as we begin a new year, I'm trying to look forward with this in mind - thinking about what might have been is useless.  We have to look to the future and measure A's future progress against her present ability instead of grasping at recovery.