Monday, November 21, 2011

Sometimes Exclusion Is the Most Inclusive Policy

The future that we hold in trust for our own children will be shaped by our fairness to other people's children.
     - Marian Wright Edelman

As we get closer to Alanna's inevitable transition from IBI into the school system (a transition I anticipate with much dread), I am forced to contemplate the whole idea of inclusion and what it really means.

Most educators seem to press for "inclusion" - that is, for a child with special needs to be part of a regular classroom with their peers, with support, if necessary.  Our local school board (similar to American school districts) even has this as a policy statement:

The Thames Valley District School Board believes most exceptional children should have their needs met, using a variety of strategies, techniques and resource support in regular classes in their home school.

I don't grasp this philosophy at all.  Placement should be dictated by the needs of the student.  For children with autism, it should be based on the child's ability to tolerate a regular classroom, how self-directed they are, their adaptive behaviour level, and most important, their ability to do grade level work or benefit from social interaction with children close to their own age.

Some educators will simply say that grade level can have modified expectations and then a child can remain in a regular class.  Some modifications might be appropriate, but not many.  Take for example a class of grade one students who are learning about addition.  If a child is in that class and does not understand how to count and the meaning of "more", "less", or "fewer", the whole concept of "modification" becomes meaningless.  You can't teach addition without a basic mathematical foundation, and if you can't count, you'll find addition pretty hard.

Is the modification to teach the student to count while the rest of the class is  learning how to add?  If so, who is teaching the student how to count?  If that is an EA, then why even bother have the student in the class if they are being taught different curriculum?  Worse, if the teacher is expected to do this themselves, what is the child doing when the teacher is working with the majority of the class?  The child is likely to become bored because the work is too hard and then we might see behaviours occurring. 

On the social level, I can see great benefit from a child with autism being with typical peers, but only if they are "close enough" socially to benefit.  A six year old child who still can't play co-operatively is going to struggle... the typical children will play in a much more complex manner and probably use language that is too difficult for a child at this developmental level to follow or reciprocate.

This all seems like common sense to me.  If a child is doing something different than the rest of the class then why bother put them in a regular class?  Withdraw them to a proper segregated class with a very small teacher to student ratio where they can get individualized instruction with "inclusion" where appropriate (recess, gym, other activities where skill levels are appropriate).  This will benefit the children in the mainstream class as well - they do not have to "slow down" for the special needs child, or have to tolerate behaviour that is being generated by frustration on the part of that child trying to learn.

The irony is that inclusion is a smokescreen for "ways to save money".  It is cheaper to put a child in a regular class with as minimal EA support as the school can get away with versus a fully staffed special education class.

Sometimes exclusion is the fair and right thing for everyone.  Pretending "inclusion" is fair for every child is nonsense. 

Thursday, November 10, 2011

Parental Social Isolation in Autism

I'm going to go out on a limb here and post about something my wife and I talk about often but find difficult to share without offending others.  In any life circumstance it is easy to feel like people around you don't "get" it.  I suspect this is true of many situations... I can comfort someone dealing with cancer, but if I've never had cancer, or the specific type of cancer, or the specific unique circumstances of a person with a specific type of cancer, I may not "get" it.

Disclaimer:  Some readers may find this post a big negative whine-fest... and it pretty much is.  Sorry, you've been warned.

It is very easy as a parent to become socially isolated when you have a child on the spectrum.  Mostly it has to do with people not really understanding your daily life.  They may trivialize something or try to compare their own experiences with typically developing children in an effort to relate.  In short, they don't "get" it, and trying to explain "it" becomes very difficult.  So here is an effort to explain and see if it works.  It may not.  Another parent with a different experience may think I don't get it either.  But I'll try anyway.

Explanation #1:  Social outings are harder for us to manage - make the extra effort to make it easier for us and we will love you forever.

Everyone is busy.  To be social one must be intentional.  This is difficult with young children and even harder with a child on the spectrum.  Here's why:
  • We're tired.  Alanna doesn't sleep normally; she is often up for hours at a time.  It is not an easy problem to solve... think I can give her Benadryl?  Tried that, it made her hyper.  This is a long story - if you have kids, think back to when you had a newborn.  Now pretend that the period of not sleeping through the night lasts 8 years or longer and not 8 months.  There you go, now you get it.
  • Alanna doesn't really play with toys for long without prompting.  That means we can't just go into a room with toys and sit and chat with other parents.  We have to be intentional about planning activities she will engage in or be prepared to engage her ourselves.  My typically developing two year old can play with a single toy for 20 minutes.  Alanna will lose interest in less than a minute unless the toy gives her sensory reinforcement.  Sorry, can't just sit and talk to you!
  • Alanna likes other children but to engage the child in question has to be super persistent, and even then, it's not always a sure thing.  Plus she can't talk and is only learning how to use her iPad.  Three year olds can't understand a sentence strip with PECS on it.  Sorry, I can't leave her with kids her own age and let them play!
Explanation #2:  We really are doing the best to make her as independent as possible.
  • Since so little is known about what causes autism, everyone has an opinion.  There are many "treatments" but very little evidence.  Do not assume what you saw on a talk show last night has any basis in reality unless you see the research in peer-reviewed respectable journals.
  • There is no known treatment that is guarantee to help every child.  It does not exist.  There is no silver bullet to cure autism.  In other words, trying shiny-new-treatment X will probably not cure Alanna.  It may help, but you are probably not an expert by reading an article, so don't pretend you are.  You just make us feel bad because the insinuation is that we are not doing enough.
  • Focus on the positive - recognize what Alanna can do and build on that.  We are too busy focusing on what she can't do and don't need any reminders.
Explanation #3:  Even the best intentioned family and friends can become overwhelmed quickly.
  • Even though Alanna is just turning four, she is becoming too much for most friends and family to care for because she needs a lot of attention.  A weekend away means paying a respite worker, and that is likely to become more common as Alanna gets older.
  • Very few people we know actually want to spend time with Alanna just to be with her.  Some do for our sake, some do because we pay them to.  It is hard to get excited spending time with a girl who doesn't talk to you and who may not reinforce you by interacting in the way you'd like.  I get that, it's hard for us and we are her parents.  It's not that people don't want to spend time with her, they just don't know what to do with her when they spend time with her.  That is just reality.
  • We try to be sympathetic when others express frustration with their kids but honestly, it's tough.  We are sorry your child has wet their pants all day long, but in two weeks your child was toilet trained... at two years old.  Alanna is almost four years old and we have taken her every 30 minutes to toilet for over two months.  She is almost there but has accidents almost daily.  Almost everything is harder for her to learn than a typical child.
Explanation #4:  The future is scary.
  • We are often asked about how Alanna will "turn out".  We don't know.  We don't know if she will be able to talk beyond a few words or not.  We don't know how independently she will be able to live.
  • Based on her trajectory and based on research about outcomes, it's likely Alanna will be at least financially dependent on us for most of her life.
  • Being unrealistic about her future is challenging for us - it reminds us how unlikely that future is.  Yes, she may get married and have children but probably not, so it is better you don't bring up that topic.
  • We are scared of what will happen to Alanna when we are gone and even more scared of any burden placed on her younger brother.  Yet, there is no way to escape this reality, so we have to plan for it.  It is prudent, not silly.
Explanation #5:  Autism and Asperger's Syndrome are the not the same thing and autism is not a mild disorder... and other myths I've heard.
  • Children do not grow out of autism.  They become adults with autism with the ability to cope with the world to varying degrees.  Temple Grandin is an example of someone who is very successful at coping.
  • Most people with autism are not savants and do not have some amazing skill they are good at.
  • Autism is not just a social disorder.  People with autism are not just socially awkward or different.  You are describing mild Asperger's Syndrome.
  • Autism does not imply intellectual disability.  There is a high correlation but it is very difficult to measure intelligence in individuals with autism.
  • People with autism have disordered senses and this is often an explanation of behaviour.  They do not necessarily experience the world the same as you or I.

Monday, November 7, 2011

Rebuttal: The Autistic "Advantage"

At first glance, it is hard to see anything wrong with the Globe and Mail's recent article on autism featuring Dr. Laurent Mottron and his colleague, Michelle Dawson.

It is easy to read this article and celebrate it as proof saying, "see, autistic people are intelligent and we are not measuring them properly."  There are some very good points in this article, but there are also some very incorrect arguments.

First, Dawson and Mottron use the word "autistic" to really describe people with Asperger's Syndrome.  Even people like Temple Grandin, who are considered diagnostically "high functioning autism" are really people with Asperger's Syndrome.  The media paints autism as Asperger's Syndrome and the two are not the same thing.  They have related symptoms, but the main point is that people with Asperger's Syndrome can communicate effectively and have no cognitive impairment.

I am not saying this to trivialize the difficulties people with Asperger's Syndrome have - they can communicate effectively but have difficulty with social communication.  This is a very different problem than someone with autistic disorder who is essentially non-verbal and possesses cognitive impairment.

So when you read "typical autistics" in the above article, you really should read, "typical people with Asperger's Syndrome".  I say this because typical people with autism do not have the same skill in communication that Michelle Dawson does.

Now, let's move on to intelligence.  The article says that intelligence is mismeasured in people with autism because of the nature of the test.  First off, I have always believe IQ tests measure ability based on the tasks on the test - that is, a test score represents someone's ability to perform the tasks given on the IQ test.  It is not a measure of true intelligence, because if it were, all IQ tests would correlate 100% - but they don't.  A person could get an IQ of 69 on one test and 86 on another.  On the first test they are cognitively impaired, in the second, they are low average.  IQ tests are a theoretical measure of true intelligence but it is impossible to measure actual intelligence.  You can only get an approximation.

Now, let's examine the argument that if you replace a standard Weschler IQ test with Raven's Matrices, autistic intelligence increases.  First off, some people will do equally well on both tests.  Secondly, it makes sense that if autistics are better at a matrix task their scores will improve.  Some tests like the Weschler scales include a matrix component but also have many other components.  I'll tell you what - you take an IQ test and then base your intelligence on one subtest - your highest score, and I'll bet you were smarter than you thought too.

Doing well on Raven's Matrices proves one thing - you have ability in abstract reasoning.  A definite benefit for sure, but only one part of the construct of intelligence.

The reason we have tests that are standardized across the population is to get a sense of how someone performs relative to everyone else, that is the point of normalized scores.  By saying "autistic people don't do well with verbal tasks" Mottron is recognizing a core deficit of autism - verbal processing.  Since the measure of intelligence is ultimately meaningless (remember, it is a measure of the tasks performed which is an approximation of intelligence - and the approximation varies widely depending on the tasks), it is equally meaningless to say "autistics have higher IQ if given a different task".  Of course they can.  I have higher IQ too if you only give me a task I am good at doing.  This doesn't mean people with autism aren't intelligent, it means ability is quite variable depending on the task and this is not typically seen in the unaffected population.

So putting aside the idea that IQ score = intelligence, I can say that people with autism will have a lower score on these measures than people without autism generally because of the tasks, and by altering the tasks I give, I am not giving the same test.  Then the normalization becomes meaningless because I am not comparing apples to apples.

Or to put it another way - if a person scores 60 on a verbal test of "intelligence", it doesn't mean they are not intelligent, but it does mean that relative to everyone else, they are not good at this task.  Since one's ability to do the task can impact how well that person learns, we have to either change the way we teach or help that person do better at that skill.  Either way, having the measure is useful.

People who advocate for neurodiversity or "acceptance" of autism push the idea that modifying expectations or the environment for autistics will allow them to contribute better to society.  No argument there.  But it is a completely different thing to say, "if I modify the environment, this person is functioning at the same level as everyone else."  No, they are not.  They are doing something they couldn't do before because of a modification.  There is nothing inherently wrong with that, but we have to recognize the difference between being able to do something independently the way everyone else does it and doing it with modifications.  This measure is important because without it we can't really measure progress.

A person's ability to be self-sufficient and independent is based on their ability to adapt and function in the real world.  Sure, some employers may be willing to adapt to help people with autism but why bother when you can hire someone who doesn't need help?  Isn't this the definition of disability?  Mottron does mention that despite "intelligence" day to day functioning is definitely a problem for most autistics.  In some fields, for some people, autism may be an advantage.  For most people with autism, it is not.  Pretending it is is disingenuous, and that is reality.

I should mention Michelle Dawson intervened at the now famous Auton case that determined the Supreme Court of Canada could not compel governments to cover ABA treatments as medically necessary therapy.  Her claim?  She did not receive treatment and she is fine.  Good for her.  My daughter isn't like her and needs treatment.  It's her best shot.

Thursday, October 20, 2011

Speech Update

Oral Apraxia

Oral apraxia involves the muscles of the mouth. A person with oral apraxia can produce normal movements reflexively or during everyday activities, but cannot imitate or perform these same movements when asked. The difficulty may range from mild awkwardness and hesitation to complete absence of voluntary movement. For example, the person may be able to smile in response to something funny but unable to smile for the camera when asked or able to open the mouth during a yawn, and unable to do so for the doctor.

Alanna continues to make gains in speech production, but it is oh so very, very slow.  She may learn a sound, or a combination of sounds, but then can't switch between the sounds or put them together in a new way.  Sometimes words are generally reproducible but other words she can't always say when asked.

Welcome to apraxia, autism's happy cousin that makes speech very difficult and in some cases impossible.

The most frustrating thing is that once a child with autism is motivated enough to speak, they still can't because the words don't come easily.  When the words don't come, it frustrates the child even more, making them less motivated to speak.

I am resigning myself to the fact that at least for the forseeable future, Alanna will have to rely mostly on augmentative communication to be able to "talk".  She is fluent in PECS but it is time to move on to a voice output system, and that is likely to be the iPad with Proloque2Go.

I am sad because I feel like I am giving up, but also happy in that I know she will make some great gains in expressive communication with a system designed for it (trying to have a conversation with PECS is, at best, tedious).

Monday, September 19, 2011

An Election About Nothing Again

For those outside Ontario (and even for those inside the province), we are presently in a provincial election.  Media coverage has been sparse and frankly, there are not a lot of issues being discussed.  Perhaps it is voter fatigue but it appears this is a sleeper election.

The Ontario Liberals are going for a third term.  It appears (though it is by no means inevitable) they will win a third majority government.  This saddens me because I am angry at this government for ignoring autism.  If you question Liberals about autism, they will tell you how much they have done to assist and how they "undid" decisions from the previous government.  Fair enough - but news flash!  They have been in power for eight years... what you did eight years ago is done, let's focus on the future.

Perhaps my greatest complaint is the rolling out of all-day learning.  Dalton McGuinty likes to tout himself as the "education premier" and he believes giving children all day kindergarten will result in better outcomes for learning.  Perhaps this is true, perhaps not - Ontario is the first jurisdiction in North America to try it.  It may improve learning, or it may be a populist decision to provide free child care to thousands of parents who wish to return to work and not pay for said child care out of pocket.

All of that aside, my primary complaint is this:  why do typically developing children, who are already excellent learners, get two more years of full day learning when children with autism are stuck on waiting lists for two or three years to receive treatment to help them learn?  Why do school age children, for whom tens of thousands of dollars is allocated, not have those funds follow them in the school?  Why do parents have to fight so hard for a decent education for their autistic kids when evidence-based best practices are known and being applied in other jurisdictions?

It would seem according to Dalton, only regular, non-disabled children are worthy of education.  That is an attitude I can't ignore.  It is wrong and it should scream wrong to everyone.

Autism aside, there are things I like in all platforms - PC, NDP or Liberal.  But I have to speak for autism because there are so very few voices speaking for autism and they are too quiet to be heard by politicians.

I can't vote Liberal.  I implore you, as the reader, to vote NDP or PC, or anything else but Liberal.  Our kids are worthy of education... of having a meaningful education that suits their needs, not the needs of the teachers, or the EAs, or the board.  How sad the "education premier" can't see this.

Sunday, September 11, 2011

Can we cure disabilities?

Applied Behavioural Analysis (ABA) is the most common treatment used in autism.  It has many detractors, and many of the developmental type treatments (RDI, Floortime, Son Rise, SCERTS) attempt to treat autism apparently not using ABA.

Of course, strictly speaking, ABA is simply providing a consequence to any action, either positive or negative, rewarding or punishing.  Developmental type treatments actually use ABA techniques, but it is done using a more naturalistic approach.  Based on what I have seen, good "natural environment" ABA is very similar to these techniques.  The Early Start Denver Model, for example, purports to be a "developmental" treatment for autism when in fact it is really an ABA approach using natural environment teaching in dyadic exchanges, pairing sensory reinforcement with social interaction.

Social communication deficits are of course central to autism as a disability. 
According autistics to whom I have spoken to as adults, and some I have read about who are considered "recovered" or "high functioning", they have not suddenly developed the innate ability that neurotypical people have to understand social situations.  Rather, they have learned the appropriate response to give during social situations and have adapted to cope with their disability.

ABA has been criticized for making kids robots and if you buy the RDI view, does not give autistics the ability to think dynamically.  If you also believe that some autistics are "cured" (I think there is a continuum of being able to cope - the better you cope the more like normal you appear), then theoretically there must exist some former autistics who now have developed the innate ability to read social cues.  Do I think these people exist?  Yes, probably, but not very many.  Very, very few, in fact, far fewer than the number of people who "recover".  Why?  Because recovery is more often "coping", and not a cure.

Autism is defined by observable behaviour.  If you don't have the behaviour, you don't have autism.  But you can still have autism and simply control your behaviour to the point that no one notices.  You may still not get jokes, understand facial expressions or body language or read emotions all the time, but if you do it well enough some of the time, you don't have autism.

Where does this all come back around to ABA?  In my limited experience so far, ABA is most difficult to apply to social skills because it can become very rote and is difficult to generalize.  However, the people who have "recovered" by learning how to operate in social circumstances have done so one situation at a time. 

Having a computer science background, one of the most interesting concepts to me at university was artificial intelligence.  One of the AI tests is called the Turing test, where a person converses with a computer or a real person but is not told to whom they are speaking.  If the AI can trick the person into thinking they are real, it passes the Turing test.

Now, given a computer with sufficient exposures to enough social situations, and given a limited enough conversation in both time and depth, it would be reasonable to fool someone in this way.  It would be even easier to create a computer program that didn't fool people but that people believed was a good facsimile of a real person.

When it comes to autism - having enough "scripts" and knowledge of different social situations is very similar.  The autistic may never be able to pick up on social cues like a typical person, but they can be close.  They can be close enough to cope - to fool some people, but be good enough others may detect an oddity but not much else.

Assuming it is not possible in most cases to really cure autism - only to give the ability to cope, ABA can work for social situations given enough training in enough situations.  Eventually, autistics will learn for themselves what is expected simply by asking the right questions.

Before I continue - let me reiterate - I believe people are "cured" of autism by coping to a point where they can functionally beat the equivalent of the Turing test with neurotypical people 99% of the time.  It happens, but it is probably very rare.

Let me contrast this to another disability.  If someone is vision impaired and vision cannot be corrected with drugs or surgery, the next best thing is to give that person coping mechanisms.  They learn to read with Braille.  They may use a service dog or other method to get around.  In the future, we may have the ability to use technology to provide a facsimile for vision (if you know Star Trek, think Geordi Laforge).  However, in the end, the disability remains and the vision the blind person experiences will never be the same as that of the person who can see.  The reality is that for most disabilities, coping is the best we can do because we can't cure them.  If a blind person had eye implants with computerized motion to mimic a seeing person's eyes and converted light to images in the brain using implants so well the person could fly a plane, are they still blind?  Yes, they are still blind. But they cope so well, it doesn't matter.

I don't think autism is any different.  Some criticize ABA because it's not a real cure.  I don't think there is a real cure, at least not in the medical sense of the word.  I think some autistics have the capacity to become neurotypicals and a variety of treatments would work for them (in other words, if you are an autistic who can become neurotypical, several treatments could work with roughly the same effectiveness).  For everyone else, all the treatments help them cope, and some do this better than others depending on the severity and types of deficits.

Now, a final unrelated point... many people with classic Kanner autism also have intellectual disability.  There is a lot of disagreement with this statement and intelligence in autistics is very difficult to measure.  But the research seems to state this is currently the prevalent view.  If true, even if autism could be cured, intellectual disability (ID) would still remain.  In this case I expect most parents of children with ID would want their children to participate the most fully in life they can.  In this case, ABA would be warranted if it is an effective teaching method.

Some people call ABA repugnant because it smacks of animal training.  But consider that a typical dog has the cognitive ability of a two year old.  An adult functioning at a two year cognitive level is profoundly intellectually disabled.  Anything they can learn to be more independent is a good thing.  Yes, they may have the intelligence of a dog, but they are not a dog.  They are human and deserve all of the respect that goes with that title.  Using ABA does not rob them of this respect if it is effective!

Monday, August 29, 2011

Autism and Marriage

When Alanna was diagnosed with autism we had many people concerned about Alanna, but also many people concerned about us.  I am happy they were, and they have good reason to be concerned.  Divorce in couples with autistic children is higher than the general population.  An interesting finding is that while most couples experience a rapid decrease in risk after their children reach about eight years old, the risk for parents of children with autism does not decline and remains at the same levels as parents with young children.

It is not difficult to see why this is the case.  Autism, by definition, involves serious developmental delays (hence the term "pervasive") across all developmental domains.  At eight years of age, a child with autism may only be functioning at a three year old level or less.  Most parents are freed of the daily grind of caring for a child of eight - most children can cloth and feed themselves, use the toilet, shower and keep themselves basically clean with some reminders.  They will have friends and can entertain themselves for short periods of time.  Cognitively, they are capable of playing games adults find more interesting and can usually enjoy many adult activities, or learn with their parents by taking up a hobby or shared interest in sports.

It is one thing to have to change a child's diaper for 2.5 years.  It is quite another doing it for 21 years, or longer.  Many parents see early childhood as a challenge that will pass, but for some parents, it will not.  It will only end when they can arrange long-term care and not feel guilty doing so.

Or, here is another example with which I am quite familiar.  It is one thing to be up with your newborn for five to six months each night.  It is quite another to be up with your child for five or six years, or longer without the benefit of daytime napping.  If you are a parent, do you recall how irritable you were with your spouse?  Now, try doing that for six years and it is not hard to see why the risk of divorce is higher.

Add to this the social isolation from friends and family and the economic hardship of having someone at home to care for the child (or working extra hours to provide therapies and interventions), and you have a recipe for disaster.

I pray often for my marriage with my own beautiful wife.  I pray God builds it up, strong and able to withstand everything.  I couldn't imagine raising two children myself, let alone with a child who has autism.  More than once, we have rescued each other from completely losing it.

Wondering how to help a couple who has a child with autism, or other disability?  Help them maintain a strong marriage.  They will need your help and they will be grateful for it.

Tuesday, August 16, 2011

Autism Risk in Siblings

A new study in the journal of Pediatrics has reported a much higher risk factor for siblings of kids with autism.  According to the study, children with at least one autistic sibling have a 19% (26% for male children) chance of developing autism themselves, and this risk increases to 32% if there are multiple children affected.

This means my son, who is developing typically has (according to this study) a 26% chance of developing an Autism Spectrum Disorder.  That's a scary number.

There are many families I have seen where a first-born child with autism precipitates an end to more pregnancies.  This news will make that trend even greater.  Alanna was diagnosed after my wife was pregnant with Tyler, but if she were diagnosed beforehand, we would have thought long and hard about getting pregnant again.  With the risks as high as this study mentions, we would have probably thought the risk was not worth it.


Monday, August 8, 2011

A Kind of Acceptance

When Alanna was younger, I used to buy her a lot of toys.  I still buy too many toys for the kids.  My wife will tell you it's my weakness.  Toys "R" Us is a bad store for daddy.

Alanna was never interested in playing with toys "properly" when she was younger.  She would play with parts of the toys, or lick them, smell them, stare at them, or do any number of "weird" things with them.  This perplexed me a great deal, especially before her diagnosis.  I tried to show her how to play with them properly and figured if I buy the "right" toy, she would like it and play with it a lot.

Fast forward to the present day...

We have taught Alanna how to use a number of toys as they were "designed".  We have taught her how to play with pretend toys, and how to even pretend how to use things for functions for which they were not intended (e.g., feeding a baby with a block!)  We are presenting trying to teach her to play with a variety of toys if they are laid out for her to play with, and we're trying to do this without a visual schedule because this is unnatural and we only want to do that if it is absolutely necessary.

Alanna will play with toys, but usually not for very long without prompting.  She loses focus and goes on to the next thing.  This is usually tied to sensory regulation.  If she is regulated and isn't engaging in activities to stimulate her senses, she plays better.  If she needs deep pressure, bouncing, running, etc. to stimulate her senses, the playing will not last long unless it is prompted.

It occurred to me the other day the purpose of play really is supposed to be fun.  So buying her more toys with the hope she will find out fun means I have to obtain toys she finds fun.  Most toys she finds "fun" are sensory toys.  She will also play games with me, but on her own terms.

I used to think Alanna needed every waking minute to be "redirected" to ensure she was learning from her environment.  Not only with that attitude completely burn you out as a parent, it is also unfair to your kids.  Here's the reality - for Alanna, bouncing on the trampoline and bouncing on her bed is fun.  Pulling out facial tissue and rubbing it all over your body is fun.  Licking stickers and sticking them all over the place is fun.  Emptying your closets and throwing your clothes on your bed is fun.

Maybe playing the way I want her to play is work.  Maybe she does it sometimes because she is interested but mostly because I want her to do it.  Kind of like when your dad tries to show you fishing is fun, but it's not.

Lest you think I've converted to neurodiversity with this post, I haven't.  Play skills are still needed for school, to interact with others and to learn other skills.  But it's still work.  I can hope she will eventually find it fun.  I can try to make it fun, but if I'm really giving her time to relax, shouldn't I let her do what she wants to do to relax (within the limits of safety and sanitation?)

Maybe the next time she is rubbing something all over her face, I'll just join her.  It's work for me, but maybe that is the price of entering her world.

Friday, July 29, 2011

Beyond Recovery

I have written before about the concept of autism recovery.  Deborah Fein made headlines some time ago by stating a certain percentage of children with autism will indeed recover, and many autism therapies claim recovery with their methods.  This percentage sits somewhere (in her estimation) between 10-20% of all cases.

When Alanna was first diagnosed and I learned recovery was even possible, it was my goal for her.  We had been very fortunate - we had an early diagnosis and possessed the resources to get intervention very early.  Although non-verbal, her initial IQ test showed cognition in the low average range.  Alanna is now three years old and will be four years old in November.  Though IBI has only been going for 15 months, she has had other interventions for at least two years.  Her talking is coming but it is oh so painfully slow, and she is so frustrated by it.

I realize now recovery can't be the only goal.  Although I would be thrilled to see it happen, it is not very likely.  Once very severely impacted by autism, she is now only moderately affected, but still has difficulties in her day to day activities.  Now what we must focus on as parents is to give Alanna as many tools as we can to make her as independent as possible, so that when we are gone, she is secure.

So while I hope for recovery, I plan for complete dependence, and we continue to push her daily to learn new skills and reach out to those around her.  It is not defeat, it is prudence.  I am not limiting her at all - I am simply trying to be realistic.  I hope she will forgive me for it later.

Wednesday, July 6, 2011

Emergently Vocal

To a parent with a child who has autism, the beginning of speech seems a lot like this - the mythical Phoenix rising from the ashes of past dreams.  We have spent a lot of time and money having Alanna work with a speech-language pathologist, with follow-up from her IBI team to get her to speak.  She has speech apraxia, so despite her best attempts to imitate vocally (despite effort, intention and desire), she cannot make many sounds without a lot of help.  It is incredibly frustrating for her.  I am convinced without this additional impediment she would be very vocal (perhaps not communicating functionally, but have no trouble with vocal imitation).

We have been using PROMPT, a technique that gives Alanna some physical cues about lip, jaw and tongue placement to make sounds.  Once she has a sound, she also has difficulty isolating it and combining it with new sounds to make words.  For example, trying to get her to imitate \o\ (as in go) can be tough because she learned this sound as go, and so the "g" has to be in front to get to the "o", and if you want to combine "o" with something else, we have to get her to drop the "g".

However, she is now "emergently" verbal.  We have several words that are consistent and have meaning:
  • Go
  • More
  • Up
  • Help
  • Open
And we have a word list of perhaps 26 words she can sometimes say, but needs physical prompting or she is inconsistent or we can't understand the speech production.

Of course all of this is very expensive but it is also worth it.  Every word she can say is like gold because it makes it easier for her to communicate and be understood.

Saturday, June 11, 2011

Life is a Whisper

Friends of ours recently had a baby boy.  It is their third child and second son.  The excitement of his upcoming birth was all around them and they were waiting impatiently for it.  But one day he stopped moving in his mother's belly and after being rushed to hospital, he was delivered by emergency C-section.

His heart had stopped, all blood drained from him.  Two transfusions later, he is alive, but with severe brain damage.  The doctors are gently pushing his parents to take him off life support because his organs are precious and could save the lives of other babies in dire circumstances.

Live and be so disabled as to be in a vegetative state, or die and save another.  When he is off life support, he may die, or he may live.  Yet no parent should ever have to make this decision.

Despite the challenges of raising a child with a disability, despite the sleepless nights, the anxiety, the financial and emotional costs, despite all of that, I get to try to be a parent.  Our friends role as parents to their son has been reduced to a single choice.

Would my broken heart still sing...
If I lost it all
Would my hands stay lifted
To the God who gives
And takes away?
If You take it all
This life you've given
Still my heart will sing to you...
- Kutless

Wednesday, June 8, 2011

Biomedical Trepidation

Most of you know that I am a biomedical skeptic.  Alanna is on a gluten-free diet but beyond that, we do not do much in the way of biomedical treatment.

All of that may change next week.  After our failure with clonidine my wife and I decided it is time to give in and go see a DAN doctor.  We feel that we have nothing to lose and possibly something to gain.  After all, the gluten free diet did help with gastrointestinal problems, so perhaps Alanna is sensitive to diet.

I am hopeful because there is some research out there proving some of these therapies can be helpful, but also nervous because of the potential for harm.  However, we have ABA therapy and speech therapy well established now, so any additional huge leaps in progress we would have to attribute to biomedical intervention.

In general I would describe Alanna as generally happy, but sleep deprived and on many days, just "unwell".  She is often lethargic and spacey and I don't know why.  Sometimes she cries for no discernable reason.  I have to wonder if she just feels ill... sort of like I feel when I don't exercise and eat crap for three days straight.

Maybe it will help, maybe it won't.  But before we pump her full of more drugs, we feel we ought to at least investigate it.

Saturday, June 4, 2011

Clonidine Fail

We have tried for months to avoid medicating Alanna for sleep, opting instead for melatonin.  This has worked well generally - in a good week she will sleep through 5 out of 7 nights without waking.  In bad weeks - well, each night is a prayer said before bed that she might sleep.

After seeing a neurologist, we decided to try clonidine, a medication typically used for blood pressure but one that had some good research behind it for reducing night wakings and inducing sleep.  We started it two weeks ago...

... and both Mom and Dad believe it is a failure.  In the last two weeks she has slept worse than ever, waking multiple times at night or waking early in the morning.  She does fall asleep more quickly, but the melatonin did that too.  We kept titrating up her dose until we hit 0.1mg today... and she was a complete zombie.

We are not totally surprised by this.  Alanna has demonstrated this paradoxical reaction before with Benadryl (it made her more excited and hyper) when we tried it before too.

So we are tapering her off this medication and hoping melatonin does the trick until the next appointment.  I hate medicating her but if it will help her sleep regularly, the whole family, including her, benefits.  But it's got to work, and clonidine is not the drug for her.

Tuesday, May 31, 2011

Communication Update

I think if Alanna had the "talk" picture in her communication book she would probably give me these two pictures on a sentence strip.

Alanna has made some good progress these last few months.  She is in regular speech therapy with a talented speech-language pathologist (SLP) and she works directly with Alanna's IBI team to ensure the therapists are incorporating her techniques.  This seems to confirm our previous suspicion of a motor planning disorder (speech apraxia).  She can say roughly ten words, mostly prompted, but sometimes spontaneously.  This in itself is a miracle, since we were at zero words before, and any words is a step in the right direction!  The SLP has said that once she can say 50 words, her learning may accelerate because in typical development this is when children get the base to practice enough sounds to learn new words more easily.

Interestingly, although ABA has proven very effective to teach Alanna most things, it was less effective for vocal imitation.  Many early vocal programs encourage children to echo sounds, and then these sounds are built up to form words.  This has never really worked with Alanna because the sounds (phonemes) were meaningless.  Once she attached the words to meaning, she was much more successful.  However, now that she has words, we can use ABA principles to get her to use them appropriately.  And her PECS language has been taught successfully using ABA principles.

While we're on the subject of PECS, we are starting to see a spike in some behaviours.  I suspect this is because as she is getting older (she is 3 1/2 now, where does the time go?) she is realizing that not everything she wants to say is in her communication book.  She has, several times, gone to her book and looked at the pictures and then became very frustrated because she could not express want she wanted to say.  Once she started a sentence with "Alanna..." and then couldn't find the words to finish.  We are bringing in more complex requesting programs to try to reduce frustration, but I really think her cognitive ability has exceeded her expressive language so much that this will continue to be a huge issue for her.  Thankfully she has started using the sentence "I want outside" to mean either (1) I want to go outside and play, or (2) I want to leave now.  I am really trying to understand the root of her communication because I think half the time what we think is a "simple" request is simply the best she can do.  For example, "I want blanket" (her comfort object) might be, "I am afraid", but she has no pictures to say that yet.  She feels it, perhaps she can label it given the pictures but you can only teach so much at once!

I believe she is very much aware of her inability to speak and she is very frustrated by this fact.  She tries very, very hard in speech sessions to make words, and even tries to prompt her own mouth to make sounds.  On the one hand, it's a good sign that cognitively she is understanding more of her world.  On the other hand, she is also lacking the ability to express herself, and that is incredibly difficult for her to deal with.

I expect more behaviours as she tries to communicate.  But I don't believe this is "bad" - I think it's evidence of something good.  We just have to try to find ways to help her tell us what she is thinking and feeling.

Saturday, May 14, 2011

Window On Disability

I found this article in the Toronto Sun very interesting.  A 14-year old girl has been kicked out of school (and not just any school, but a special needs school) because of aggression issues.  She has two paid aides that are obviously not getting the job done.  It is unfortunate that behaviour analysts can't enter her classroom and analyze where the aggression is coming from.  Unfortunately for us in Ontario, Board Certified Behaviour Analysts, an American designation, isn't a regulated profession, so the schools won't call upon them even if hell has frozen over.  In any case, I have commented many times before on what seems to be a very inefficient and ineffective way for us to fund special education.

What is more interesting though are the comments people have made on this article.  While I realize the kinds of people who tend to comment on news stories tend have a certain world view, it is representative of people's opinions and in an effort to "seek to understand" them, it's worth examining.

Having an autistic, low functioning and non-verbal nephew I am very well versed in dealing with these children. It's unfortunate it has to be this way but in this case the school board made the correct decision. It wouldn't matter how many TA's were assigned to this child. If she is physically aggressive and unmanageable then there is no handling her in this environment and she is better off at home where she is comfortable and unstressed and her parents can work with her or they can hire a private care worker to work with her. Not one of you who hasn't had an autistic child or close relative should have anything to say negatively about this decision because you don't know squat. I care for my nephew deeply but I realize that he is in a private facility because that is the best place for him to learn and progress at his own pace. Other students do not deserve to have their education hindered because one special needs student disrupts the entire class structure. This decision was the most fair thing the school board could do.

My response:
What this person is claiming is that this girl is better off at home not disrupting the other children.  What they fail to understand, despite their claims that they are knowledgeable, is that every other child is entitled to an education.  What makes this girl different?  Perhaps the parents might be open to this little arrangement if her home workers, educators, or therapists were paid for - but the author is suggesting the parents pay or home school their child.  How is this fair?  I'm sorry the child is disrupting the class, perhaps the school could provide her with another work area where she can learn.  She has two paid staff, are these the right people?  Instead of blaming the parents can we think about changing the supports to help everyone?
I want so badly to NOT be cruel about this. But, you make it tough. She is 14 years old, and by Moira MacDonald's account she understands maybe 10 words. She is never going to learn to be social. Ever. $27,000 is being wasted if that is the goal. Leave schools like Drewry Secondary for kids where there is some hope of progress.
Because "we" are on the outside, looking in, we are "selfish", and perhaps misinformed...uncaring even. But I tend to think it's the other way around. People with special needs kids all too often don't see the math in what they are demanding. I'd love to see a society where kids like Emily get everything they need and desire. But those funds don't exist. $27,000 is being spent on someone with a command of maybe 10 words when (and forgive me for being honest here) people with potential are foregoing university educations for half that amount because there just is no money to assist them. That's just wrong, no matter what side of this issue you are on.

My response:
These are the words of someone who has never known disability.  I used to be like this person but obviously have gained a new perspective.  The truth is we have no idea what Emily is gaining, learning and observing.  Her inability to communicate does not make her intellectually disabled.  She may well be intellectually impaired but I don't know that.
As for wasting $27,000 - parents do not get a choice how this money is spent.  The board gets the money and the board decides how, and the unions like their cut.  Perhaps the parents would prefer to have her at home with $27,000 of funding to work with speech pathologists, occupational therapists or behaviour therapists, but that's not how the system works.
We don't choose who is worthy and who isn't in Canada.  This poster believes Emily isn't worth the money.  If we take this argument to its logical conclusion, we should euthanize people who take too many resources from society and nurture the strong.  If someone is ill and a surgery is costly, we should let that person die rather than let them try to fight.  No one would ever dare suggest this in a hospital (despite the billions it would save us), why does this argument fly in education?  Perhaps this poster would suggest the same... all I have to say is, I hope for their sake people who share their opinions never form government... and if they do, I hope the poster remains "useful" forever, else risk being disposed of as being unworthy.
I don't want to see the kid suffer, either, but let's face it...she knows 10 words at the age of 14. We start "educating" her and what do we get? 20? 30? 40 words? Maybe she can do math at a second-grade level?

Spending resources educating this child effectively amounts to a wager that this child will become a functional, productive member of society. As cold and as callous as this sounds, that's probably not going to happen. This child will probably have "special needs" for the rest of her life, and someone's going to have to pay for those needs. In other words, the odds on the wager are way too long for at least some of us to be comfortable with the bet that is effectively being taken with our tax money.

My response:
Wow.  This is just... wow.  So should we just institutionize Emily?  If she can't possibly make gains to be more independent, less dependent, contributing in some way?

The real failure is not with the school system as this article trys to portray. Let me correct this article, the 2 billion dollars is not "specifically to help special needs kids like her". It's to help all special needs kids in the school system. Dave Abel is obviously biased and irresponsible for making this suggestion. I don't like it but the reality is funding is not unlimited and these resources cannot be selfishly used when so many others can really benefit. There are degrees of disability and the funding must go where it will benefit the most.students. Some parents just don't care about how the other students in the classroom are affected. They don't care if their child has a negative impact on 20 other studends in the class. There's a limit enough is enough! I resent that my and ten other special needs children has to do without a program that may cost $1,000, because $27,000 is going to one student. Then on top of that, these students are being constantly interrupted in the classroom. If the parents are unable to cope, then unfortunately some children have to be institutionalized. Don't like it, but you can then have more specialized personnel providing better help to more children. At least 10 to 15 other students might get the programs that can be effective throught their life.

My response:
Wow, I'm sorry her needs are too much.  Institutionalizing her won't cost any less, but you could euthanize her.

A complete failure to accommodate? Sounds like they have accommodated this young person for many years and they have not been able to transition into the system. What happens when they are to old to go to high school? Who will be the next that will be expected to accommodate? The local College, University, Mall, Employer? What is the parents responsibility in helping there daughter fit into their environment? Pinching is in response to stress, where else but in the school system do they expect this to be considered acceptable behavior? The parents better hurry up and teach their child appropriate behavior. If it it takes two support staff now to safeguard this 14 year old from others, the future does not look very bright.

My response:
This person obviously has no idea about autism.  I seriously doubt the parents have not done everything they can for Emily including spending tens of thousands of dollars on treatments, perhaps more.  People see the aggression but don't clue in that the intent is not there - she is probably trying to communicate something, but with no behaviour analyst to figure it out, no one is listening to Emily.

And if it were that easy to "teach Emily appropriate behaviour" do you really think they wouldn't have done it already?

Behaviour is communication; it is not always what we think it is.  It is functional and has a purpose and it may not be "because I like to hurt others".

Saturday, April 23, 2011

The Trouble With Advocacy

For those of you outside Canada:  We are presently in a federal election.  It's our fourth in seven years.  Elections always remind me of advocacy because they tend to be the time politicians suddenly become interested in what you might have to say.

Autism advocacy is tricky business.  There are many interest groups and all of them have a different spin.  There are very few advocacy groups with whom I completely agree.  Most active autism advocacy groups are pushed by parents, a group of people who are already lacking in both time and money, since kids on the spectrum tend to suck both away from us.  Let's examine a few well known autism groups and see where the chips fall.

I struggle a lot with Autism Speaks.  They are the largest advocacy organization in North America and tend to compete with local charities for dollars.  My biggest two issues with Autism Speaks are (1) their huge focus on research, and (2) their tendency to pay their staff ridiculous compensation (go to page 9).  Research is important but not to the detriment of advocating and supporting families struggling with autism, including programming and providing materials.  This seems to be left to local autism societies, many of whom struggle with financing.  If people ask me if they should give to Autism Speaks, I tell them they are better off giving their money to their local autism society, such as Autism Ontario here in Ontario. 

Medicare for Autism Now is an organization based in British Columbia that has been particularly active in trying to knock off Conservative candidates in the Canadian federal election.  Their claim is that children with autism are being discriminated against because treatment is not covered under Canada's universal health care system.  Their solution is to amend the Canada Health Act to include specific coverage for IBI and ABA therapy.  I have several problems with this:  (1) Not everyone accepts ABA as a treatment for autism they want (I happen to believe it is the best treatment but recognize not everyone agrees), (2) It is discriminatory to make ABA treatment funded but not so many other things like speech therapy or physiotherapy, (3) Putting this requirement in the Canada Health Act will not improve any services because it does nothing to make waiting lists shorter, which is the primary problem many parents have in accessing this treatment.  True, amending the Canada Health Act will put ABA therapy in the hands of some parents in provinces that do not provide it, but interestingly, the most vocal parents tend to live in Ontario and B.C., which already have comprehensive ABA coverage.  In the B.C. case, amending the Canada Health Act will not change a thing - $25,000 per year per child under 6 years old would be considered meeting that directive by a court.

Let's discuss the fairness.  As a parent of a child with autism, I understand the financial cost of treatment.  It's $50,000-70,000 per year to treat it with intensive ABA, and people cannot afford this.  We need help.  But there are other disorders, perhaps not as common, such as speech apraxia, that may need intensive treatment for success.  Speech language pathologists are not cheap.  What about a debilitating condition requiring physiotherapy?  What about people with no drug coverage for cancer or other conditions?  The reality is that Canada does not have a universal health care system, it has a partial health care system mainly concerned with keeping people alive, not about quality of life.  The only way to make this fair is to cover all para-medical professionals plus dentists and drug coverage.  In an age where 40-50% of provincial budgets are going to health already, do you really think this is going to happen?  I admire this group's goal but it's both unfair and unrealistic in this parent's view.

Autism Resolution Ontario is an advocacy group that advocates for timely access to ABA services in Ontario.  I am generally in agreement with this group (and indeed am part of it) but I have one major issue in that it advocates for redirecting all autism funding to IBI.  I strongly disagree with this for two reasons:  (1) While IBI works for some kids, it does not work for all kids.  It is unfair to withdraw supports, however meagre they may be, from children who do not respond to this treatment.  (2)  Support for summer camps is huge for the school age population and is one of the few things parents can obtain help with when children are this age.  It should not be withdrawn either.  Laurel Broten, the Minister for Children and Youth in Ontario has said this before and I tend to agree with her, even if I think the budget for the IBI program is terribly inadequate.

The Ontario Autism Coalition has been around for several years and was instrumental in opposing Ontario's age six cut-off years ago.  While inactive until recently, it is operating with renewed vigour as a provincial election looms.  Besides the medicare for ABA funding argument, there is little about this organization I find questionable and so far I have admired their advocacy efforts.

Tuesday, April 19, 2011

Fairness in Education

Ontario's public schools have long argued that Intensive Behavioural Intervention (IBI) is a form of "therapy" and thus cannot be delivered in the school system.  Although it is therapeutic in nature, IBI is simply a way of teaching students with autism in an intensive manner (it is just intensive ABA).  The principles of ABA are used daily in schools, whether teachers know they are doing it or not.  When you think about it, most types of "therapy" with the exception of medical procedures are really learning techniques.  Speech therapy is a way of teaching people how to change how they talk and process language.  Physiotherapy (or physical therapy) is a way to teach people how to move their muscles in different ways.  Occupational therapy teaches people how to perform daily living activities.  Psychologists use cognitive behavioural therapy (CBT) to help people learn how to change the way they think.  There is no real practical difference between education and therapy.

Let's examine how special education dollars are spent.  In Ontario, dollars are given to the board on a per student basis but the money does not follow the student.  Thus it is possible to have 100% of the dollars for one student go to a school where that student does not attend.  School boards like this because it gives them maximum funding with maximum flexibility and zero accountability.  If we look at the funding for a full-time educational assistant, we can see they earn between $20-24 an hour for 6.5 hours a day if they are full time.  In this particular link, you can also see there is a special stipulation that the EA in question should be able to translate American Sign Language (ASL), one imagines for a deaf student, but possibly also for a student with autism who uses sign language.

To be an EA, one usually needs a nursing background, an early childhood educator background, or a developmental service worker background, all available through Ontario's colleges. 

To employ an EA full-time at $24/hour for 6.5 hours a day costs the board (excluding benefits and other sundries) about $33,000.  This assumes a 42 week year (I am guessing here - eight weeks for summer plus one week at Christmas and March Break).  If there are benefits, that might bump us up to $37,000 a year.

A typical ABA worker might receive the same hourly rate, without benefits, and with much more training than this EA.  They would be more accountable to parents.  They would allow children with autism to make real gains on an IEP.

So tell me why we hire people to be EAs for children with autism who are not qualified?  If we can require EAs to be ASL interpreters, why can we not require experience with ABA?  And then tell me why we don't hire the people to conduct the education that we know works for less cost?

The problem is not money in the system, it is how it is wasted.  Our kids deserve better. 

Sunday, April 17, 2011

I Wish

As Tyler gets older, I marvel at how I can have a full on conversation with him.  He's not even two yet, but somehow we can talk about the things he likes in a book, his favourite numbers and letters, what he did in his diaper and how he is feeling. 

I have been solo with Alanna this week since her mom is away with Tyler, so there's been lots of good daddy-daughter time.  Despite all this time with her, I miss her.  She's been withdrawn lately and very hard to engage.  It has felt like it used to two years ago when she was there but it was like I wasn't in the room. 

I can interact with her, but there is a lot of prompting going on and it seems so forced.  This isn't always true - usually she is more engaging and it is easier, but not lately.

We went to the pool today because Alanna usually loves swimming and it's great exercise.  We both had meltdowns... her at the pool, and me in the parking lot after the pool.  She wouldn't give up her blanket and I think was just too anxious today to venture in (this is highly unusual).  So we sat and watched the kids swimming for about fifteen minutes, then left.  She was frustrated, I was frustrated.  Going to the pool is a hassle and I felt like it was a waste of $10 and driving there and back.

While I was cradling Alanna I watched all the other kids and thoughts crept into my head.

I wish Alanna could be like that.
I wish she could be normal just for this afternoon.
I wish she could talk to me.
I wish she didn't get anxious.
I wish I had my daughter back.

Some parents have this whole "autism is a gift" thing going.  I am just not there.  I choose to fight autism because I do not think that the world is suddenly going to wake up and bend over backwards for people with disabilities like Estee Klar.  Instead, I want to equip Alanna to be as independent as possible while still being herself... indeed, the job and goal of any parent.

Today, for a few moments, I stopped looking at my daughter as a person I loved and instead looked at her as a disabled person.  When I realized in horror what I was thinking, the guilt kept on coming.  Because if a girl's daddy can't recognize her as a person with strengths and talents, worthy of love and with something to contribute, then how will the world treat her?  It was only a few minutes, but those are thoughts that should never enter my head.

I wish I could stop wishing she didn't have autism.
I wish I was I better parent.
I wish so many things.

Friday, April 15, 2011

Fanshawe Success

Yesterday I got a chance to meet with the graduating class of Fanshawe College's Autism and Behavioural Science program, designed to create trained staff for working with children with autism in IBI/ABA and school programs.

I was very pleased with the turnout and the interest.  Many of the graduates had a strong desire to work privately with families but had no idea where to begin.  I am hoping the information we gave them was helpful in getting them to a place where they can launch successful careers and help lots of parents and kids in the process.

The reality is that there is still a shortage of trained therapists and still not a good way to connect families who need help with people who can help them.  Even for families who elect to receive services directly from the local autism provider in Ontario, such as Thames Valley Children's Centre, there are still many parents waiting or ineligible for the Autism Intervention Program.  I hope that through this we can get more therapists together with parents who need them!

Wednesday, April 6, 2011

Vocalization Frustration Part II

Back in August, I blogged about my frustration with attempting to get Alanna to speak (and when I say my frustration, I imagine hers is even worse).  We were pumped about seeing our new speech-language pathologist.  The good news is, she is truly excellent, probably the best speech-language pathologist we have ever seen.

Did PROMPT work?  Yes, it did work.  She was able to get Alanna to learn new words, like "on", "open", "ball", "more".  Alanna was paying attention, clearly motivated, clearly understanding speech was expected, but she just couldn't get her mouth to move in the right way to make the right sounds.  After hours of therapy we did get her mouth to move in the right way, but she had difficulty switching (say from an open mouth for open to a closed mouth for more).  Open and on were good, ball was coming, bubbles had a good approximation, but "more" was "open" and then "buh".  Working on "more" turned everything into "mama".  So it appears we are back to the beginning again.

Alanna's recurrent pattern is always to get to five or six words and then as new words are learned, she loses the ability to say the words she knew before because she seemingly no longer can make the sound properly.

What's the verdict?  The speech-language pathologist has told me that the inability to make proper sounds and switch between sounds is typical of speech apraxia, but that "losing" words once learned is not.  Regression is more typical of autism, but usually if there is a regression it is more global and not specific to one area, due to seizures or major life changes.

We will try for several more weeks to see if this pattern continues.  If so, then we will discontinue speech therapy because it is expensive and is not breaking the cycle.

I used to have great hope Alanna would be able to use speech as a primary form of communication, but as time passes, I have to admit that I am less hopeful.  It breaks my heart.

Saturday, March 19, 2011

Pottytraining FAIL

This is Alanna's elimination chart.  As you can see by this graph, toileting is not going well.  It will drive you to drink.  It's hard.  And for us, it appears it is going nowhere.  We don't think Alanna is getting it.

The most frustrating thing is that she is doing pretty well with her therapists.  Just not with us.  Except for a couple of really bad days she is getting 80-100% success in six hours of therapy time.  It's the rest of the day she is not.  Why is this?  We suspect it's because therapy time is structured and Mom and Dad time is not.  She is allowed to stim and then it's waterwork central.  Even if we took her every ten minutes, she could still soil her pants.

Maybe she's just not ready?

Saturday, March 12, 2011

I Have A Secret

Pssst.  Hey you.  Yeah, that's right.  Come over here.

I have a secret.  You'll want to know it, trust me.

Shhh... ready?

I think your son might have autism.  You should check it out.

And this is where I wake up from my dream before the guy in question punches me out or otherwise inflicts extreme physical violence.

Having read a lot on autism and spoken to many clinicians, I have a little autism detector in my brain I can't turn off.  I can't help myself... I screen every child I run into.  I'm no psychologist and do not pretend to be able to diagnose autism, but there have been a few times where it is so obvious to me it's like the kid spray painted "I HAVE AUTISM" on the wall.

For example, let's take today.  I was at a playgroup with Tyler.  I saw a Dad with his 2.5 yr old son.  I said hello to the son.  He was not interested in looking at me or responding to me at all, even when I was quite annoyingly persistent.  While he was verbal, his speech was limited to one word phrases and the articulation was unclear so he obviously had a speech delay.  He had no interest in the other children despite repeated attempts by his Dad to get him involved.  He played very independently - using many toys appropriately, but was very quiet and generally ignored any attempts by his Dad to join him in his activities.  At one point, he decided opening and closing the door was quite fun and when his Dad removed him from this perseveration, become quite upset and told his Dad "No".  He joined the rest of the kids for bubbles but was very focused on the bubbles and again ignored the children.

I said to the Dad, "Wow, your son plays so independently."  He replied, somewhat embarrassed, "yeah, we are trying to socialize him but he's not getting a lot of opportunity."  I left it at that... perhaps I would have had more of an "in" with Alanna there.  Perhaps I weirded him out by trying to engage his son so much.

To me this kid was likely on the spectrum.  He may not have full blown autistic disorder but he definitely had red flags for ASD.  But I couldn't tell this first time Dad, could I?  I debated it.  I really did.  But in the end it wasn't my business and I know so many parents struggle with denial.  

How would you react if a stranger said, "Excuse me but I think your child may have autism.  You should get him evaluated."  Assuming you even knew what autism was, you might be very angry with this stranger.  Perhaps someday you would be thankful, but at that moment you'd be angry.

Perhaps I am just chicken.  I worry that this child will not be identified until he is four if he doesn't attend pre-school.  But it really isn't my business, is it?