Ending Early Intervention

As A approaches her sixth birthday (late this year), we are beginning to contemplate her next steps.  Most programming in many jurisdictions end around age six, and although Ontario's IBI program does not have to end at age six, there is a lot of pressure from regional providers to put children into school once they are school age.

When A was younger, I never used to want to say "she will not recover" because I did not want to limit her potential.  As we approach school entry, however, I can now write that and not cringe.  She has made so many gains in the past three years, but looking at her developmental trajectory, she will always be behind her peers, particularly in regards to communication, social skills, and academics.  I do not think she will be independent and I think I am okay saying that.  I still believe she would adapt well to assisted living, perhaps not requiring a group home, but living with some supports.

So now, like so many parents before me, lies the crucial question.  What next?  What now?

If past experience is any indicator, A can learn, but not observationally.  She needs everything explicitly taught in a very systematic, step-by-step manner.  Series of steps need to be chained together and a task analysis performed for anything beyond one step.  Teaching her this way is doable, but it requires the teacher to have special training in ABA techniques.

A's community school has 500 students, 300 between ages 4 and 7.  There are at least six children with ASD at the school.  There is a high ESL population.  There are other exceptionalities at the school.  There are four education assistants (EAs).

I suppose an IPRC for A and T would increase this amount of EAs... it may, or it may not.  There are no guarantees of them having any knowledge of autism or ABA.  There are no guarantees those principles will be used.  Since A has very limited speech, there is no way I will really know what is going on at school.  Although I would be less worried about T, he is just now beginning to tell us some of what he does in pre-school.

What to do?

Do I abandon A to the school system and begin saving money for her dependent future?  Or do I continue to invest in teaching her skills, in the hopes she will have more options in her adulthood?  She will not be completely independent, but the more skills she has, the more options she will have... and we can rest easy knowing we did our best to prepare her for the rest of her life.

Some children with autism learn so slowly, this may be an easier decision.  Parents may know that learning will be slow, understand school is "something to do", and can save for the inevitable supports their child will need as an adult.  Some do so well with IBI they can actually benefit from general education.

Then there is A, and many like her, in between.  They do not learn fast enough to function in general education, but not so slowly a parent can feel stopping all real learning makes any sense. 

Many parents have counselled me to be open to "inclusion" - even if A is at a JK level academically, that being in a grade one class makes sense.  She will be invited to birthday parties.  Kids will say hello to her.  She'll have "friends" in school.

These are all nice things.

Will it make any difference at age 21 when she is finished school, and all of her friends in grade one are off to university?  I wish A could tell me.  If she said, "I want to go to school with everyone else", this decision would be so much easier.  But she can't tell me, and I know she will get frustrated in general education, yet not pushed or challenged enough in special education.

What to do?

Socializing kids with autism is important, but I am not sure school is the place to do it.  Developmentally, as our kids age, they are further behind their peers every year, especially socially.  Some kids with autism are not as delayed, and so can benefit from the peer interaction.  But when the gulf becomes wide - an eight year old functioning like a three year old, the "peer" interaction no longer makes sense.  The social interactions of eight year olds are well beyond a three year old, unless adapted by the eight year old.  

I think children with autism can be socialized outside school in community activities, such as camps, community service clubs, and leisure activities, as well as programs intended for people with special needs.  

I think school is for learning.

What to do?

You'll have to wait to find out.  But there is a plan.

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?