Monday, December 27, 2010

Sick, sick, sick...


It's been a long two weeks.  Both Mom and Alanna got gastroenteritis, then we've had something like the flu the last week.  Sickness and autism do not mix well.  When my son was sick, he enjoyed cuddles and I felt I could "do" something to help him feel better, even though I really couldn't.  But Alanna, with her limited expressive communication, couldn't express her discomfort in any meaningful way.  We have not taught her to say "I don't feel well" using PECS, sign, or any vocalization yet, so the alternative is the old standby - crying, howling, and being generally miserable.  I tried to comfort her, and although she is generally quite affectionate (a fact for which I am most grateful), she would have none of it while she was sick.  I suppose I cannot fault her much for it seeing as when I was sick I would be happy to just be left alone (that could also be just wanting a break from the kids though too!)

While I am a biomedical skeptic, I can definitely understand the premise that kids with autism who feel physically ill are going to have behaviours and not gain skills to their potential.

Saturday, December 11, 2010

Compassion


One of the things that has really struck me since Alanna's diagnosis with autism is how it has personally impacted my world view.  A person in a wheelchair, a person with an obvious intellectual disability or other condition would have probably gone unnoticed by me in days past.  I might have been polite, even moderately helpful, but probably noticeably uncomfortable and any help or social contact given would have been primarily motivated by wanting to disengage as quickly as possible.  Let's face it - people are in general not comfortable around those with disabilities.  They do not know what to say to such an individual, or they may be simply afraid of them.  Children intuitively sense this from their parents and learn this response unintentionally.


When I was in university I had the opportunity to do a bit of street mission.  What struck me most in that short time was that most of all, the homeless people on the streets wanted to be acknowledged as human.  They wanted to be able to share their stories and not be treated as if they didn't exist.  I have to admit, after that experience, I tried, when I could, to not treat a beggar like a slot machine for my guilt, but rather, to try to treat them like a person and understand their stories too.


This is the same reality for those with disabilities.  It is easier to pretend they do not exist, like the homeless (or criminals, or other undesirables) than it is to engage them as just another person.  


A wise person once told me that he knew within a few moments of meeting a person whether or not they would be generous with their time or money because of a true generous spirit rather than guilt.  He said, A man who believes he is where he is because of his own actions believes he deserves his fortune.  But a man who knows he has his fortune because he was chosen to have it will be more willing to give it up for the service of others.


So, I challenge you dear reader - the next time you see a person with a disability, engage them, get to know them.  If you don't know what to say or what to do, say so.  It may seem uncomfortable to you, but realize that the person you are addressing probably already knows this and has answered many such questions before.


How do I play with Alanna?  She is not responding to me.
Why doesn't Alanna talk?
You're in a wheelchair - do you want me to kneel when I speak to you?
You're struggling walking, should I be helping you?
I know it's hard for you to hear, does it help to speak more slowly?


Having a child with autism has made me a much more compassionate person.  I am starting to see others as God's children, people to be loved and celebrated, and that although people have and always will make poor choices, many people are where they are because of circumstances too.


Before you think I am going to sprout "autism is a gift" nonsense, let me be frank - it's not.  It sucks and I hate it.  If I could do anything to make Alanna's autism go away tomorrow I would do it in a heartbeat.  I simply wanted to point out that in our life circumstances, we can choose how to react - to learn and grow, or to be a victim.  I am thankful I can understand others better - even if, given a choice, I would have preferred to never have had such an understanding.  Perhaps that makes me a terrible person.  I just think it makes me human.  Like Alanna.  Like all of us - with or without disabilities.

Thursday, December 2, 2010

How to Hire a Therapist



This was how I was feeling the other day when our longest serving therapist for Alanna announced she was resigning.  In truth, I am very happy for her - she is moving on to a solid full-time job at the school board.  She will be in classrooms and has years of experience working with kids on the autism spectrum.  Some lucky parents are going to be fortunate to have her around for their kids.

On the other hand, she has been with Alanna since she was 22 months old, and she knows Alanna inside and out... she calls them Alanna's "tells".  This is important because she can adapt her instruction based on how Alanna is reacting.  This takes a long time to develop well.  So I am admittedly very bummed about this situation.

Luckily we have already hired a replacement for this therapist.  Here is my advice for hiring therapists.  As always you are free to take it or leave it, or better yet, improve on it.

First - unless you are lucky enough to be in an area with private agencies (which in Canada is pretty much only the larger urban centres of at least 500,000 people), most therapists are independent.  In the South West catchment region for Ontario's Autism Intervention Program, there are no local agencies, though I am aware of a pre-school type program operating in Windsor.

Here is what I've found:
1.  The majority of therapists are women.  This is not very surprising in a profession working with younger children.  Also, men are likely to face huge obstacles (read: bias) against them because of the vulnerability of the population.  I am normally very positive about men working with children.  However, the thought of a male therapist alone with my little girl for hours a week, often working on things like toileting just doesn't sit with me.  It's completely unfair but that's just the daddy protector coming out in me.
2.  The majority of independent therapists are young.  Young being - early to mid twenties.  Most therapists who do well at the profession either get promoted to senior therapist positions (writing programming and supervising other therapists), or they leave in favour of something full-time with benefits in preparation for their up-coming maternity leave.
3.  Even with good pay and other perks, turn-over will be too high.  It takes a long time to train a therapist well, but there are two problems with ABA therapy jobs.  First, to make a living the therapist has to cobble together hours with multiple families.  The pay is therefore highly dependent on how busy they become.  They also have to deal with problems directly with the families and have no one to go to bat for them if there's a working issue.  Second, although most therapists enjoy working with children, it is a little isolating. If the child is presenting behaviours (i.e. you are being kicked, punched, bitten) and/or the child is not verbal (i.e., social behaviour is limited), it is a lot of work, and oftentimes there is no gratification because changes can be slow.
4.  Like anyone else, people leave for good reasons.  They get a better paying job, they want to change to careers, they get pregnant, their spouse got transferred, etc.  It all happens to everyone.
5.  Experience is great but "fit" is more important.  It's great if you can find an experienced therapist, but it will do you no good if the therapist is not experienced with your child's age group, or the way they learn.  I'd much rather hire a therapist who loves young children and is enthusiastic than someone who has worked exclusively with teenagers but has years of experience doing it.  Remember, this person is going to be spending hours together (probably 1:1) with your child every week.  They need to like each other!

I have resigned myself to #3 but wish I could do better.  It would be nice if everyone stayed at least a year but I'm not holding my breath.  Good times.

Sunday, November 28, 2010

Parental Assessment


The Childhood Autism Rating Scale (CARS) is a common clinical assessment used to determine if a child falls on the autism spectrum.  When we had Alanna initially diagnosed at 22 months, this instrument was used (along with many others) to show she had autistic disorder.


Looking back at the clinician's rating (and ours - both were on the psychological assessment), we rated Alanna 47.  The highest possible score is 60, and severe autism is anything 37 or higher.


We recently did the CARS together and Alanna's score dropped from 47 (our original score) to 37.  This means Alanna (according to us - we are not clinicians) is close to dropping from "severe" to "mild/moderate" (she needs one more 1/2 point to drop to moderate).  We were being conservative so I am pretty confident a psychologist observing Alanna would probably rate in a similar way.  Here's the cool thing... the cut off score is 30.  If Alanna were to drop another 8 points in the next couple of years, she would technically be rated as "not having autism" on this scale.


Now - it's just one scale.  Other scales could still rate Alanna has having autism even if the CARS does not.  The CARS also doesn't speak at all to her intellectual or adaptive functioning.  She could still have serious delays even falling off the spectrum.  Still, it is very positive to see that she appears "less autistic" than she used to.  Now, don't get me wrong - you would notice right away something is "off" if you met her.  But take it from me - she is much less autistic than a year ago.  She has come so much out of her shell.  In particular (from the CARS) we see she:
  • Is better at relating to people.
  • Has become much better at imitating.
  • Has improved play skills - she knows how to play with some toys.
  • Can cope with changes in her environment.
  • Is much less fearful and anxious.
  • Has better non-verbal communication.
It is nice to see this laid out in an assessment - it confirms what we thought but makes us be a little more critical of our opinions.  Sometimes the parents can be too optimistic.

Sunday, November 21, 2010

One Little Word

Words can be famous.  They can build up or destroy, be memorable or forgettable. They can make or break you, heal or harm you.  They can form a basis for deception, or strung together, tell a lasting truth.

When you can't find the words to say, sometimes you borrow someone else's... a quote added to the beginning of a composition, chapter of a book, or paper in university.  People with autism can use echolalia to convey a thought when they can't come up with the words on their own.

I marvel at the power of a word.

Today Alanna looked at me and smiled, then said Daddy.  She said it clear as a bell - she was clearly engaged and she knew what it meant.  I broke down right there beside her and sobbed.  I completely lost it.  The hope I had locked deep inside came out all at once and I just couldn't handle it.  My wife came beside me and wept with me and cradled my head until I could compose myself.

Before you revoke my man card, you have to understand what this means to me. I have been waiting for this word for three years, not knowing if it would ever come.  A child with autism is lost in their own world, and getting them out is a long, tortuous process.  Today Alanna was able to do more than just interact non-verbally... she showed recognition and called me by name.  It's as close as I've ever seen to her reaching out to me and expressing her feelings - something that comes to naturally to my son and other kids not affected by autism.

If you are a parent who has been through this - or perhaps you are still hoping for this moment, you know what I mean.  Something so small, yet so significant.  A memory I can hold onto during the bad times, the long nights, or the meltdowns.  I hope it will come again many times but there are no guarantees.

To all parents - treasure your children.  If they call you by name and recognize your face... if they show you their love, consider it a blessing.  It may be second nature to them, but to some parents these are words and expressions they will never hear.  They will love their children for years and never know one way or the other whether this is reciprocated.  They may dream, or guess, or think they know.  But to hear it for themselves is something else entirely.

She said Daddy!

Saturday, November 13, 2010

Alanna Turns Three

I can't believe it - my little girl is three years old in a matter of hours.  All this time I've been holding out - saying she is two until she is three.  Well, now she is three.  To celebrate this milestone we've created a little video on her behalf.  Happy Birthday Alanna!  You are so special to us and so many other people.  Keep amazing us - we know you will!


Friday, November 5, 2010

What is Autism Recovery?


I have often wondered what the term recovery from autism really means.  Most autism treatments do not make this claim.  Some ABA providers make this claim, as do some biomedical proponents.

I am not going to comment on biomedical treatments because I have little experience with them nor much belief that they work beyond a gluten-free/casein free diet (In my personal experience only makes autism "better" by making children who have GI issues feel better.  This is not the same as "recovering" from the core deficits of autism.)

This recent article by Adrienne Perry, one of my favourite local autism researchers, finally breaks it down for me.  According to her study, she defines "best outcome" as:
  • Testing in the non-autistic range on the CARS.
  • Testing 85 or higher in IQ - that would be "low average", or in the 16th (or higher) percentile.
  • Testing 85 or higher in Adaptive Behaviour Composite on the Vineland-II Adaptive Behaviour Scales.  This would mean the child is functioning at the 16th percentile or higher overall in their age group.  Note this includes social ability.
Of course, just because a child has accomplished "best outcome" doesn't mean they do not have residual affects of autism.  By definition, autism is diagnosed based on observed behaviour since there is no known medical test.  If a child tests non-autistic on the CARS, they are by definition not autistic.  Similarly, if their IQ and adaptive skills (that is, their ability to function in every day life) is close to average then one would expect the child is, for the most part, "recovered".

I think this is something of a misnomer because any "recovered" child with autism has more or less learned how to overcome their disability.  But the disability is still there.  For example, the CARS will ask if a child is distracted by visual stimuli.  A child who has "fallen off the spectrum" may still be distracted but know how to control the distraction, or at least not do it when people are looking.  It may not mean they've lost interest altogether.

Recovery or not, I think I personally need to get my head around the fact that autism will affect Alanna her entire life, and accepting that fact is not the same as giving up on her.  It's a hard pill to swallow.  I haven't taken it yet... but I'm trying.

Thursday, October 28, 2010

Why a National Autism Strategy Is Not a Panacea


Autism advocates in Canada have been working to develop a so-called "National Autism Strategy".  The latest has been announced by the Autism Society of Canada as part of the Canadian Autism Spectrum Disorders Alliance.  Another pillar of this strategy lies in bill C-360, which will not pass the House of Commons.  The bill is designed to ensure ABA and IBI are considered "medically necessary" as part of medicare and thus must be funded in each province.  In 2007, the Senate of Canada produced a report on autism services in Canada, making a number of recommendations.

Notwithstanding the issue of adult supports for people with autism (post-education period), most efforts tend to go into school-age or younger children with autism.  I will not comment on adult supports since I am not well informed of the issues, beyond anecdotal evidence from parents claiming that they are terribly inadequate.

In Canada, education and medical care are constitutionally controlled by the provinces.  Some provinces welcome money from the federal government with strings attached, but some do not (notably Quebec and Alberta).  The only way for the federal government to directly help families affected by autism is through the federal spending power, which basically means giving money directly to parents, or giving money to other levels of government but only if the rules set out by the federal government are met.

Without going into all of the politics, this is very difficult given the current configuration of parliament.  There is also the issue of singling out autism spectrum disorders as deserving of money but ignoring other disabilities.  This is defensible in that the costs of IBI/ABA treatments are high, but then, not all parents with children who have autism use these methods or agree with them.

I am not going to say "no" to more support to families impacted with autism.  But attempting to force standards on treatment and detection (medical responsibility) or educational standards on the provinces will not work well.  The best we can hope for is more money in the system, hopefully more directed to parents to use as they see fit.

Sunday, October 24, 2010

Assessments

The provincial IBI program in Ontario likes to use two measures of progress - Adaptive Behaviour, like the Vineland II test, and IQ tests, such as the Weschler Preschool and Primary Scale of Intelligence (WPPSI).  Some parents do not care particularly about these measures, particularly the IQ test.  IQ is notoriously difficult to measure for autistic individuals due to the nature of autism:  communication is impaired so it is difficult for the individual to explain what they truly know.


If you live in Ontario and have a child with autism, you need to care about these instruments.  In particular, the Vineland II measures "adaptive" functioning.  This is basically a test to measure how well your child functions in life as compared to children their own age.  When used in an IBI program, it can typically be used to determine a child's "trajectory".  For example, in a six month period, is a child in IBI progressing at least six months in development for each domain?  If so, they are falling no further behind but not catching up either.  Failure to show enough improvement at the right rate results in the conclusion that the child's "development trajectory" is not being changed by IBI and results in a quick discharge thereafter.


The theory of intensive ABA (or IBI in Ontario) is that your child should be showing clinically significant gains across most domains or it is not effective (read:  not worth spending $60,000 per year of taxpayer money).  However, interestingly a 2006 study based on the autism program in Ontario found that all children, even those who were still progressing slowly, doubled their rate of development while in IBI.  From the study:
Rate of Development. As noted above, children were quite variable but, on average, were substantially delayed developmentally prior to the program. In fact, they had been developing at about one-third of the rate of a typically developing child. Children's rate of development (based on the Vineland age equivalent scores) during IBI was approximately double their rate prior to IBI, and this was true for all three initial subgroups, i.e., even the lower functioning children doubled their rate of development, as a group. This suggests that the developmental trajectory of children was altered during their participation in the IBI program. Many children were even developing at a typical rate (although they may not have "caught up" to typical peers).
So if you are parent of child in IBI, or waiting for IBI - pay attention to this test.  It is used to make clinical decisions on your child's continued progression in IBI.

Monday, October 18, 2010

Fun with Pumpkins

This past weekend we decided to take the kids out to grab a pumpkin and carve it up.  Alanna did a great job helping us scoop out the "guts".  It reminded both of us (Becca and I) of our childhood... we both felt like little kids carving up our jack-o-lantern.  Tyler was interested in the pumpkin but once we showed him the guts he was scared of it.  Maybe next year little buddy!



Friday, October 8, 2010

Confessions


I'm starting to get better at comparing Alanna to other kids her own age.  Many times, I'm able to accept where the kids are developmentally, and accept where Alanna is developmentally and how she does many things a normal kid does, albeit sometimes in a very different way.  However, I've got to confess, I did lapse into my self-pity again this week.  A very sweet little girl I know who is a little younger than Alanna saw her Dad after about a 45 minute separation, saw him, and came running shouting "Daddy, Daddy!" only to be picked up in his arms and swung around... naturally she had a big grin on her face.  After I got over coveting that simple interaction I realized that Alanna does that with me in her own way.  She might try to climb over me, smile, or press her body against mine.  If I'm really lucky I might even get a nice hug!  It is her way of telling me she missed me.

While I'm confessing, I have another thing to share.  My wife sometimes reminds me not to try to plan too far in the future (I am very much long term, forward looking person).  With Alanna, it is so hard to tell where she is going to be.  Some days, I feel happy knowing she will be herself (and develop as far as she can) and that's good enough for everyone, including me.  Other days, I worry myself thinking if I don't keep pushing for the best interventions, she won't make all the gains she could make... and have the best life she could have.

Case in point:  transition to school.  Alanna probably has a few years before this becomes an issue since she is not yet even three.  But when the time comes, do we spend $58,000 a year (how we would even get this money is beside the point) on a designated ABA school like New Haven, where Alanna will certainly learn more skills designed to get to be as independent as possible?  Or, would I use that money to save for her future (RDSP) or another a savings vehicle to provide her with lifetime care?  Yes, she will probably make some gains in the public school system, but she would make probably greater gains in a special school.  However, spending $750,000 until she turns 18 (assuming I had this money) to fund this education vs. saving it for a lifetime care fund is going to be a tough decision.  Some argue once the critical intervention time has passed, intensive intervention is not needed.  This is the refrain of the Ontario government, which stresses constantly that IBI is "time limited."  I am not sure I agree.  However when it is your money and you are responsible for the life of a child, it's not such an easy decision.  I wrack my brain on this stuff.

So perhaps I should "cross that bridge when we get to it", as my wife likes to remind me.  I'll really try.  Let's see how long I can put it out of my mind!

Thursday, September 30, 2010

Mommy Witch


One of the things I've noticed about having a child with autism is the perspective it tends to give you.  You focus on the positives, the little things - the small victories of daily life.  Recently, I was in an airport and had the misfortune of observing a mother with a five year old girl.  The mother was "reading" with her daughter, but she was incredibly nasty to her.  I heard things like, "I just told you that word", "You've got to do better", "Finally - thank you for getting it right".  The mother was rolling her eyes and very obviously angry.  The little girl was crying because, surprise, this was not much fun for her.  It took some self-control for me to not rebuke this person for being so unsupportive to her daughter.  I felt badly for the little girl because if this is the kind of person her mother is, she's going to need a lot of counselling.

At least this kid is trying to read.  At least she is talking.  Does it matter how quickly she is picking it up?  Make it fun for her and she'll learn it.  Man, what a witch.

Saturday, September 25, 2010

Ride and Stride


This Sunday we'll be participating in the London Ride and Stride for Autism Ontario.  I like this event because it's fun, it involves the family, and the money raised goes directly back to the local community for support and programs.  If you are interested, you can support Alanna's team here.  Just be sure to note you are supporting Alanna I!  

Sunday, September 19, 2010

Social Engagement

I have mixed feelings about Alanna's clinical psychologist lately.  On the one hand, he impressed me greatly this week when he said that Alanna is making good progress but he is concerned about her engagement and lack of initiation.
He is concerned she is too passive; taking direction but not initiating on her own enough.  Now, I agree with him completely, but Alanna does initiate to ask for things.  She asks for things all the time and if she wants you for something, she can be persistent!  However, she is often content to observe in a social situation and either zone out or wait to be invited to participate rather than go and do something.  For example, at pre-school, she will play with toys, but she will not go and pick something out she likes and play spontaneously.  You have to ask her to pick one or show her one to play with it.  This is fairly typical of how she is at home as well.

So the psychologist agrees with me in that he believes the ABLLS-R is not helpful for social programming.  His solution is to adapt RDI activities to increase engagement and initiation.  We will definitely be doing that.  However, he is also leery of us consulting with another behaviour analyst to get the programming and training in place.  Many ITs are very comfortable with discrete trial but engagement activities need to be more natural environment because by prompting you are kind of defeating the purpose.  The person with which we want to consult is someone with lots of experience in this area.  We think everyone will benefit from their knowledge.  How frustrating!

Friday, September 17, 2010

Issues in Education





Last night I had the pleasure of listening to Lindsay Moir speak about issues in autism education.  The dude knows what he is about - he knows about issues all over the province and how they have been resolved.  A few things I learned!


Ontario Spends More on Special Education Funding Per Student Than Any Other Jurisdiction IN THE WORLD.


I found this one hard to believe.  But it's not so hard, when he explained that a lot of this money gets diverted from special education to teacher salaries.  Last year, enrollment in the local school board dropped by 1500 kids.  Only 15 teacher positions were eliminated.  Since we know they were not teaching 100 students each, those teachers must have been re-assigned.  Teachers in Ontario are expensive.  After five years of teaching, many teachers are making $85,000 per year or more and they have the most powerful union in the province.  Not only that, but their massive pension plan (well managed too) owns a lot of businesses, so the politics are very complicated.  The claim is that, despite huge losses of Education Assistants (EAs) funding is still flowing - and special education money is being diverted to other areas.  This is because special education dollars are allocated on per board basis, not per student or even per school!


Your Child's Rights
I found out our children have the right to:

  • Attend school for a full day, if other children can go for a full day.
  • Have their needs met properly - can take a variety of forms.
  • Go to school if not toilet trained.
  • Be properly supervised for lunch if other children are supervised.
Grants
There are several grants available to school boards.  One, the Special Equipment Amount (SEA), allows parents to buy whatever they need for their kids to succeed at school.  There is no cap on this amount.  This means that, for example, if we needed a speech output device for Alanna at some point, that would get covered.  This is good because these devices cost $10,000 or more.  There is another grant to get two attendants (EA / Nurse) if your child has severe behavioural problems or is medically fragile (the first can be authorized by a psychologist).  And finally there is a grant to educate staff on autism.  This is fantastic because most reasonable teachers and support personnel will take the opportunity to be educated if the training exists!

Ways to get an EA
Lindsay was very clear that EAs are only one way to get needs addressed.  The other way is basically relying on "volunteers" - students in post-secondary settings who need placements, or seniors.  You cannot pay for an EA in the system because the union grieves that as work contracted out.  However, there are ways around this.  One woman in Toronto contracted an ABA worker to accompany her son 25 hours a week to school.  However, the contract stipulated that she was not paid for those hours - they were volunteer hours.  However, the woman paid the worker to be "on call" for 25 hours on the weekend.  The fact that she had never called on the worker on the weekend was apparently not important.  The school board took her to court on this one but lost.  I think this is complete nonsense personally.  If a parent is going to fund a support worker, why the heck wouldn't the school want that?  Yes they can't "control" them but it frees up resources for elsewhere.

You Need an IPRC For Your Child To Be Legally Exceptional
Many schools just try to put children on Individual Education Plans (IEPs) but if you don't initiate the Individual Placement Review Committee (IPRC) process to get your child officially designated exceptional, then the principal can withdraw services at any time.  IPRC kids must always have their needs met as specified by the review committee.  You can initiate IPRC on the first day of school.

Thanks to Lindsay for a great information session.

Monday, September 13, 2010

Augmentative and Alternative Communication


If you are a parent of a non-verbal child on the spectrum, you will have agonized over this topic.  These children need a way to communicate and in particular to communicate their needs.  Without a functional communication system, the child will use other means of communication, like leading an adult to what they want, or crying, screaming, and self-abuse.

The most common system introduced to children is the Picture Exchange Communication System (PECS).  The goal of this system is to make a child an initiator (not just a responder) of communication and to understand its usefulness through exchange of pictures for desired items.  Later, children can make comments and have simple communication exchanges with PECS.  This is the system Alanna uses.  There are six phases of PECS; Alanna has remained in phase three for months.  Currently she is able to go to her communication book, choose what she wants (or choose something representing a label if we ask her what something is) and bring it to us.  If it is a request she does it spontaneously without help and she brings it because she is internally motivated to get something.  We have not gone to phase IV because that phase introduces sentence structure, and we had, to this point, been making good progress on speech.  The concern from our psychologist was that Alanna could just start saying "I want" instead of the actual items, which she was at that point.  However, her vocals have really decreased.  Hours of mand training for good clear approximations are now met with silence or throaty "guh guh" sounds.  So now the question... continue with mand training with this much intensity or dial it back and introduce more complex PECS to allow Alanna to speak in sentences and comment?

Verbal behaviourists like Dr. Mark Sundburg, Dr. James Partington, or Dr. Vince Carbone are fairly persistent in their view that non-verbal children should be taught sign language.  Don't get me wrong; we use a verbal behaviour type therapy approach.  However, sign language is not always suitable... Alanna, for example, has a lot of trouble with imitation in general.  She is improving, but her language acquisition is much faster with PECS.  There is also the problem of usability - most people are not going to understand sign, especially if they are approximations.  However, a sentence of pictures is clear to almost anyone.

There are problems with PECS, though.  Eventually she will have too many and we will have to switch to a voice system if she is not vocalizing or picking up some sign.  To me, PECS seems more functional for long term use, but sign language seems better for learning how to talk.  Obviously, we want her to talk!

Here's hoping for some clear direction...

Monday, September 6, 2010

Non-Labour Day




There was no labour going on today.  Today, we met Grandma and Grandpa and took the kids to Storybook Gardens, where they were able to see animals and play on equipment, go through a maze and ride the merry-go-round!  Hurray!  Thanks to some good therapy, Alanna is able to enjoy climbing on the equipment and sliding down the slide independently.  It was great to see her enjoying herself, feeling proud of her independence and us knowing she was safe to do it. Thanks Grandma and Grandpa for a great morning!  Also, special thanks to Grandpa for the great photos!






Saturday, September 4, 2010

Simple Joys and Decisions

Alanna is finishing up some imitation programming in head action imitation and foot/leg imitations.  She'll next move through the typical ABLLS-R sequence, like mouth/tongue imitations, arm/hand imitations and fine motor imitations.


Tyler, now 15 months, is imitating spontaneously.  I don't need a verbal Sd to get his attention, like "hey copy me!"  He makes eye contact with me and just tries to copy me, usually correctly but sometimes in a funny way.  This morning, I pointed to my nose and he pointed to his head like a gun (maybe he knew what he was doing after all!)


When I see this, I can either respond with a "I wish it it were this easy for Alanna but it's not", or I can find joy in this simple moment of being a parent, having fun, and knowing that I am so thankful he does not experience the same difficulties Alanna does in this seemingly easy task.


Today I choose the latter and I laugh at him - we have fun.  This moment never comes for some parents and I am happy it came for me.  Beyond thankful.

Monday, August 30, 2010

IBI Helps Most Children to Some Degree

I was looking through some old links and happened across this link on ONTABA.  Adrienne Perry, a professor at York University, has a significant research interest in IBI and is actively publishing on this subject.

Of note from the link above:
Children's rate of development (based on the Vineland age equivalent scores) during IBI was approximately double their rate prior to IBI, and this was true for all three initial subgroups, i.e., even the lower functioning children doubled their rate of development, as a group. This suggests that the developmental trajectory of children was altered during their participation in the IBI program. Many children were even developing at a typical rate (although they may not have "caught up" to typical peers).
Here is an interesting note - even those children considered lower-functioning doubled their rate of development while in IBI.  Even those kids "cut off" from IBI because their "trajectory" is not altered doubled their rate of development.  This statement tells me that discharging children from IBI because progression is not fast enough is more about money and is not what is best for the child.  Putting kids in school therefore would slow their rate of development to what it would have been pre-treatment.  Put another way, transitioning to school a child who cannot learn from their environment halves their rate of development.

In a more recent journal article:
Perry, A et al.  Predictors of outcome for children receiving intensive behavioural intervention in a large, community based program.  Research In Autism Spectrum Disorders (2010). 

On the impact of age at entry:
"...if the goal of IBI is to alter developmental trajectories and boost children into the average range, this may only be feasible if children begin IBI when they are very young.  Thus, it is critical that efforts are made to encourage early diagnosis and to reduce wait lists and ensure children receive IBI early whenever possible." pg. 10
The above quote comes out of some discussion that "best outcome" cases were strongly correlated with age at entry.

On the use of benchmarks:
"Thus, it seems to us most responsible to offer children with autism an initial trial of IBI, as recommend by the Ontario Expert Clinical Panel and to monitor their progress carefully using clear and specific benchmarks, as recommended by the Ontario Benchmark Development Expert Panel." pg. 12
It is important to note the authors, with the notable exception of Adrienne Perry (to my knowledge) are all current clinical directors in the Ontario IBI program or have been clinical directors in the past.

Yes, I wholeheartedly agree with early diagnosis and intervention.  I do not agree with the benchmarks.  ABA can help all children regardless of how fast they are developing.

Monday, August 23, 2010

Vocalization Frustration

My mission in life lately has been to try to get Alanna to talk.  The more reasonable part of me says that if I just let her talk on her own and give her lots of opportunity to practice (which she does during her six hours of therapy every day) she will.  But the wound up, anal part of me wants progress so badly.

Here's the funny thing.  The girl can talk.  She has had some great words, many of which are as clear as day.  Sometimes, she will echo a word clear as a bell.  The problem is that she doesn't retain anything for long.  Words that come and go (or have come and gone) include go, muffin, pretzel, bubbles, up, no, ball, sticker, playdough, juice, round and round.  She used to also try to read this book called "I Can Dress Myself".  It was cute to see.  But this was only when she read it over and over again for days.  Sometimes we get random echos back for words she hears.  It seems like it's all motivation with her.

Trying to run the standard echoic (verbal imitation) types of ABA programs don't work.  You can tell her to say "ba", but she has no idea what ba is unless you try to pair "ba" will something she may want, like "bubbles".  But she can approximate better than "ba" for bubbles, usually.  We have several words we are using Kaufman cards with - starting at a lower approximation and moving to higher ones as she masters the lower ones.  Again though I hope as we move up she retains the words.  I would much rather her be able to say /b/ whenever she wants than "bubbles" on and off.  I'll take slow and steady with retension over long phrases or even words at this point.

This week we are going to see a speech language pathologist (SLP) with some experience with PROMPT.  PROMPT is a technique used for dyspraxia of speech, which basically means a person has trouble getting their oral muscles to do the right thing.  Obviously to Alanna hearing the sound is not enough to imitate it, at least most of the time.  PROMPT is designed to help cue the child by moving their mouths into the right position to make the sound.  So far Alanna has been reasonably tolerant of manipulation of her mouth.  I hope this can help her make the right sounds!  I'm pumped! 

Thursday, August 19, 2010

Stim Time

Stimming, or "self-stimulation", is a term many parents who have children with autism understand.  Children with autism enjoy many activities that seem odd to us and are generally done alone.  Generally I dislike stimming because it's time that could be replaced with more productive activities, but I realize Alanna enjoys it and sometimes she just needs to do it.


Some favourite stims include:
  • Bouncing on the couch
  • Kicking her feet
  • Many different sounds, including a cry sound that is really really irritating
  • Throwing things and picking them up, then throwing them again
  • Chewing on inedible things (PECS are a favourite)
Usually stimming means:
  • I'm bored
  • I'm tired
  • I really need sensory input (see I'm bored above)
This one is new and admittedly was kind of funny... (don't mind the highly expensive duct-taped couch).


Tuesday, August 17, 2010

Could It Be Autism? Part 2

Some time ago, I posted on our diagnosis experience and what seems to be a general lack of information available to parents with children diagnosed with autism.  Unfortunately, an acquaintance of ours recently discovered his son likely has autism.  Like we were, they were completely lost and there is no good information available.  So, with that in mind, I will give my unsolicited advice.  Could it be autism?  If you suspect, or know someone who might, send them here and perhaps this will help.  This will be of particular help to parents located in Ontario because I know this system best (though I have done some research on BC and Alberta).


Top Seven Red Flags

  • Your child does not respond to his or her name when you call most of the time.
  • Your child does not seem to be developing speech normally.  If you are not sure, check out this site.
  • Your child does not seem to know how to play with toys properly.  They may ignore them, play with them in an odd way, or play with them in a childish way.  They may be obsessed with parts of toys.
  • Your child does not look at you and try to communicate with you using gestures.
  • Your child does not point to ask for something or show they are interested in something.
  • Your child does not shift their attention from you to an object and then back to you again.  This is called shared or joint attention.
  • Your child does not look at you to see what you think before responding to a stranger or trying a new activity.  This is called social referencing.
Okay, I'm Worried Now

If some of the red flags sound like your child, the next best place to go is Autism Speaks video library.  It will show you typical development versus a child with Autism Spectrum Disorder, or ASD.  You'll need to sign up but it is worth it.  

The autism spectrum consists of three disorders:  autistic disorder, the most severe, PDD-NOS, or atypical autism, which is more moderate because not all symptoms are present, and Asperger's Syndrome, in which children have average or higher than average cognition and no speech delay.  Note that while Asperger's Syndrome presents with no speech delay, children with this form of autism have a lot of difficulty with language and how to use it properly.

Now what?

Most people will now say you should contact your doctor.  Outside of Canada, this may be the best bet.  However, in Ontario, it is faster to engage a clinical psychologist if you can afford one.  If you can't afford to go to a psychologist for an evaluation, then you can use the public system but it will take a year to get a diagnosis.  You need a diagnosis to access treatments.  A psychological evaluation can cost $2000.

If you wish to contact your doctor, you can print off and bring in the M-CHAT, a diagnostic screening tool most doctors should know about.  If your doctor agrees with you, they will probably refer you to a developmental pediatrician.  Most developmental pediatricians have a waiting list several months long.

If you wish to engage a psychologist, contact the College of Psychologists of Ontario.  Use the public registry to find a clinical psychologist specializing in autism (look for psychologists who work with children).  Contact them to begin.  They will conduct a psychological assessment that will tell you definitively if your child has autism.  Note that a developmental pediatrician will probably order the same tests.

While Waiting for a Diagnosis

You should have your child seeing a speech and language pathologist.  In Ontario, early childhood intervention services are available.  You can also engage in a private service.  If possible, try to take the Hanen More Than Words program.  It is an excellent parent program and will give you lots of tools to help your child interact and connect with you.  The program will likely be offered through your local speech pathologist.

The key to intervention is trying to pull your child into your world.  Even though it is difficult, the more time you spend effectively engaging your child, the better.

Got a Diagnosis

Once you have a diagnosis you can move towards treatment.  The next step is to contact your autism intervention program (this applies only to Ontario).  There are nine regional agencies, detailed here.  Once you contact the program, you will have to see if you are eligible.  Your child will be tested to see if they are severe enough.  If they are not "severe" enough, you will not receive any treatment beyond what you are already receiving and if you want Applied Behavioural Analysis (ABA) - used in Intensive Behavioural Intervention (IBI) then you will have to pay yourself.

Assuming your child is eligible, you will be placed on the waiting list for service.  The average wait time is about two years but could be as long as three years.  You may receive some service in the meantime; otherwise, you are on your own until service begins.  I highly recommend engaging a parent coach to help you through this time.  The coach should be an experienced ABA therapist, who you can find on ABACUS.  The coach can help you work through some problem behaviours.

If possible, you should try to pay for some ABA therapy yourself.  A proper intensive program can cost $50,000 per year or more, which is too much for most people.  But you can make progress paying far less.  Invest what money you can.

Functional Communication

While you wait for service in IBI, you should try to establish a functional communication system.  This is usually sign language or the Picture Exchange Communication System (PECS).  Inappropriate behaviour is usually caused by frustration in communication.  Replacing the inappropriate behaviour with something like PECS or sign will make things better for you.  The parent coach or a speech language pathologist with experience in autism can help you establish a functional communication system.

Importance of Early Diagnosis

If you wait on the public system to diagnose your child, they will potentially not get treatment for three or four years.  This is precious time lost.  Go with a private diagnosis if you can afford it!

Sunday, August 15, 2010

Super Daddy



So now you get to hear from me...I am Tim's wife, Becca.  I hacked into Tim's blogger account so I could make a post about how awesome he is.  :)  Right now he is upstairs running an IBI session with Alanna just because he knows how much she craves structure, and how IBI has become such a part of her life that it seems we can't live too easily without it.

Last night was a bad night.  Alanna was up at 12:00, 2:00, 4:00 and then 6:00...and every single time, her Super Daddy was up taking one for the team...while I slept with my ear plugs in.  Sometimes I am so amazed at his patience and perseverance, especially on so little sleep.

So here's to you, love of my life, amazing father and husband.  Without you, I don't know what I would do...God has blessed me with you and I am forever grateful.

Saturday, August 14, 2010

Question and Answer

One the nice things about blogging is that with the right tools, you can see how people ended up on your blog.  Most non-regular readers come from Google, and it is interesting to see what they searched for to get them here.  In this entry, I will share some of that, plus perhaps try to get some more relevant information to the searcher, should they ever come back.


Search term:  autism and two months old and staring at trees; staring at trees autism; autistic people hate certain textures.


Entry hit:  Sensory Processing and the Autistic Child


This entry is probably the most popular one on this blog; it gets hit all the time, probably because sensory issues are very common with autism and they are hard to understand.


As for the particular searches I am guessing these people were looking for...


Alanna did stare at things for way too long when she was younger and this was a huge red flag for us.  As for a two month old - some people claim children can now be diagnosed or at least considered "at risk" this young, but I don't think very many people can do this.  Looking back, Alanna had signs at two months but they were very subtle.


On textures - yes, this is true.  Many children with autism hate certain textures  in their mouths, on their hands, on their bodies.  Sensory integration is a therapy that can be used to give these kids more or less sensory input as they need it.


Search Term:  ibi ontario 5 year old cutoff
Entry hit:  You Reap What You Sow


If the person searching for this was looking for information on cutoffs, let me say this:  the age cap has been gone for years.  It used to be true that children were discharged from early intervention when they turned six, but that is not true any longer.  The government of Ontario fought this in court (Wynberg v. Ontario), and even won, but then decided to remove the cap.


Search Term:  autism ontario services best place to live
Entry hit:  None


I think this person was looking for where they could live to get the best services.  This depends on what you are looking for.  If you want the largest variety of services, then go to Greater Toronto.  However, most of these require a lot of money.  If you are looking for the shortest waiting list for IBI in Ontario, then move to the Southwest region (London, Chatham, Windsor).


Search Term:  RDI toy ideas
Entry hit:  I Don't Get RDI


Another popular entry.  People are looking for more information on RDI probably because you have to pay money to get more information on RDI.  I am no expert on this topic, but based on what I know from other families, any and all toys can be used with RDI and the activity is based on your regular family routine.  Your RDI consultant would tell you what to do (note:  you have to pay for this consultant).


Search Term:  why is ibi so expensive
Entry hit:  I Really Hope IBI Works


This is a great question. Short answer:  IBI is intensive ABA and is a term almost exclusively used in Ontario.  It's expensive because to do it right, you need 30-40 hours of intervention per week.  Some quick math:


30 hours a week x $25/hour for a therapist x 52 weeks - $39,000
3 hours a week x $75/hour for a senior therapist or BCBA x 52 weeks = $11,700
3 hours a month x $175/hour for a psychologist to supervise x 12 months = $6300


Total cost = about $57,000 per year.  That's why.

Wednesday, August 11, 2010

Graduating More Instructor Therapists Won't Solve The Crisis

Given the high profile of autism services in Ontario (as a political hot potato), the ministries of Children and Youth Services and Education publish a common newsletter, like this one from Spring 2010.

In it, like so many other documents published by the Ontario government, is a story about how they are increasing the number of graduating Instructor Therapists.  In Ontario, an Instructor Therapist (IT) is the front-line ABA worker.  While I applaud the government on investing in these college (not university) level programs, they do ignore the core problem:  funding.  Unfortunately, like many trained teachers, I fear these graduates will be unemployed or underemployed as parents desperately seeking services cannot afford them.

So yes, they are training staff, but they provide insufficient funds to employ them.  The local autism programs pick up the best graduates, leaving the rest to find work in the direct funding or private sector.

I am happy to know that hopefully more ITs will be available since finding them is still difficult, at least outside Greater Toronto.  But we are one of the lucky families with funding. What about everyone else? 

Saturday, August 7, 2010

My Autism Heroes: Dr. Ivar Lovaas and Dr. Stanley Greenspan




I thought it appropriate to group these two "autism heroes" together.  This year (2010) has not been kind to great scientists in the field of autism.  Dr. Greenspan passed away earlier this year, and Dr. Ivar Lovaas, just last week.

Dr. Greenspan (top) was the leading figure behind the DIR model and Floortime, a popular intervention for autism.  While I do not subscribe to everything Floortime, there are a lot of ideas Dr. Greenspan has published that complement and enhance ABA therapy.  What I like about Floortime is the simplicity.  You don't pay to understand Floortime, much like you don't pay to understand ABA.  For this reason, if people are turned off by ABA I usually point them to Floortime over RDI.

Dr. Lovaas (bottom) was the individual responsible for bringing ABA into therapeutic use for people with autism.  Without him, we would not have the interventions we do today.  Thanks to him, there is hope for my daughter where so many years ago she would have been institutionalized with no hope for a future in this life.

I thank both gentleman from the bottom of my heart.  You both will be greatly missed.

Tuesday, August 3, 2010

Educational Justice



Recently I was made aware of a judicial case where a mother, in Ontario, was trying to place her child in a regular classroom with support.  This had been the scenario since kindergarten, and the student was now moving into grade four.

The special education committee ruled he should be placed in a special education classroom and not in a regular classroom with supports.  The parents appealed this ruling to a court, because they felt this was unfair.  Interestingly, they brought a local expert to argue that the ABA supports the school was offering was inadequate.  However, the tribunal could not force the school board to offer better supports; they could only rule on whether or not the child's placement was adequate.

Many parents are outraged by this.  These kinds of cases scare me because I see our future in them.

My opinion:
Is the ABA support offered by the school sufficient?
Probably not.  Most parents I have spoken to in the Toronto area have told me the ABA implementation in schools is woefully inadequate and many children are not learning in these classes as they were in IBI.

Is the placement valid?
I may get flamed for this, but it would seem that it is more appropriate, if the child is going to remain in school, to go to special education.  If his behaviours are very disruptive to the other students, there is no real choice.  We cannot expect a child who is screaming, stimming, or otherwise engaging in disruptive behaviour to be with a mainstream class because those students will be so distracted they may not learn well.  Additionally, if the student is functioning at a four or five year old level, there is no way they are learning the same curriculum as a mainstreamed grade four class.  It would seem the decision made is a good one.

I think the real underlying complaint in this judicial review is the quality of ABA programming in Ontario schools.  The complaint is that, despite an order from the Ministry of Education - PPM 140 - schools are still not prepared for students on the autism spectrum.  It is truly unfortunate and infuriating that there are private schools that do offer the support needed - for $50,000 a year.  After forking out this amount yearly for private IBI during the preschool years, who has the money left to afford such luxuries?

If school boards cannot provide appropriate supports, then give parents choice in education and issue vouchers like Alberta.  Let us choose the supports for our own children.

Alas, I fear the unions will never let this happen.  Education for all, and better education for the wealthy.  But we don't have two tier education or health, right?


Friday, July 30, 2010

Research Empowers

I think there are two types of autism families in this world.  Families who help others but mainly focus on their own journey, and those families who focus on their own journey, but remain concerned about those people behind them (and to a lesser extent, those ahead of them).

I spend considerable amounts of time looking at autism research (in journals and elsewhere), and I like to support autism research when I can, because only by researching can we unlock the autism puzzle.  I am particularly passionate about early diagnosis, something which is difficult and expensive in Ontario.  There is a research study being conducted at the University of Windsor on early diagnosis.  If you live in Ontario and have a child six or under, please consider participating.  It will help researchers understand barriers to timely diagnosis.  This will not help you personally if you have a diagnosis already, but think of the families coming after you - can you spare a few minutes to try to help them avoid the heartache you did?