Saturday, January 30, 2010

I Love My Neurotypical Son

My son Tyler is almost eight months old.  So far, he is developing very differently than Alanna did.  He responds to his name, prefers people to objects, and is already able to imitate me.  It's a great sign he is probably neurotypical (i.e. not autistic) unless he regresses.  His risk of developing autism is 5% as opposed to 1.5% in the general male population.  As a parent with one autistic child you certainly worry about the rest, but so far - so good!

Having a typically developing child is therapeutic for the entire household.  He shows great interest in his big sister and he is very persistent in getting her attention.  It gives us (Mom and Dad) an idea of how typical children behave, because up until the point he was born, we didn't really know.  As he surpasses Alanna's development, he can begin to help us teach her how to socialize and communicate better.  He'll probably end up feeling more like a big brother than a little brother, but I know he'll be okay with that.

It's strange, but if we had waited longer to try for a second child, Tyler would have likely never been conceived.  I can't imagine any family dealing with the stresses of a pre-school autistic child contemplating more children, especially knowing the increased risk.  But I'm so happy he's here.  He's a great kid - for all of us.  Here's to my buddy Tyler!   

Thursday, January 28, 2010

Are We Crazy?

This week, we attended our "Parent Orientation" session at Thames Valley Children's Centre for the Autism Intervention Program.  There were six children represented, including ourselves (three couples, two dads, and two moms).  The kids ranged in age from 3.5 years old to age 6.  Alanna was far and away the youngest kid in the group at 26 months.  Every parent in the room relied on the public system for their diagnosis, waiting an average of 1-2 years for a diagnosis.  Not a single child has had any ABA intervention (or probably any intensive intervention of any kind) except Alanna.  Many parents were not even aware ABA services could be purchased privately and most were not aware of the costs.  I felt like a chump seeming "holier than thou" in the group since we've done our research and almost everything presented we learned months ago.

This has gotten me thinking - are we crazy?  We are killing ourselves to pay for Alanna's therapy and while some may argue we have the means to make it work (single parents with other children - it's not going to happen), most parents in the system aren't even aware treatment is possible outside of it.  They are unaware psychologists can diagnose autism and a 1-2 year wait just to get a diagnosis is not necessary.  If one used "the system", a two year old suspected of autism would not receive intervention until they are five or six if they are lucky.

So on the one hand I have to ask myself, if we are the only parents doing this, are we nuts?  Should we back off, restore some sanity to our lives and let the system take over? 

Is the reason the Ontario government can under-fund autism treatment because 90% of parents with children with autism don't know anything about how it works?  It's one thing to be aware of what is available and not be able to afford it, it's a completely different thing to have zero knowledge of it.

Seeing Alanna's progress, I can't bring myself to think of stopping.  We have to soldier on.  The system is a failure.  Crazy or not, our path is set until relief comes (17 months away and counting down) or we collapse from exhaustion trying to make this work. 

Sunday, January 24, 2010

Four Months of ABA

Alanna has had four months of ABA and has been doing more intensive ABA (IBI) at 20 hours a week for approximately two weeks now.

What a difference four months of therapy makes!

Four months ago, she communicated her desires by screaming, pulling, reaching and occasionally hitting her head on the floor.  Now, she exchanges pictures for desired items and occasionally vocalizes for desired items!  The screaming and frustration has stopped completely.

Four months ago, Alanna would never look at us or respond to her name.  She engaged in self-stimulatory behaviours ("stims") like bouncing on furniture and running aimlessly around the room.  Now, she gives us good eye contact, responds to her name more often, and prefers to "stim" with one of us (i.e., play games where she can run around or bounce) rather than by herself.

Four months ago, Alanna wouldn't look at objects (track them with her eyes), play with a puzzle (she would throw the pieces), play with a shape sorter (she would throw the pieces and run off), follow any simple commands (come here, sit down, stand up), or perform any imitation of any kind.  She couldn't match letters, colours or objects or do any task that required her to understand matching things together.  She could not throw or catch a ball, or put on her shoes.  Now she can do all of these things (she is still working on the shoes but can do most steps independently).  Her imitation is improving every day and she is learning to vocalize by asking for things she really wants (think muffins!)

Alanna has a long way to go.  She is engaging in parallel play with her brother and friends at daycare, but still has a lot of trouble socializing, communicating and avoiding repetitive behaviour.  But wow, has she ever come a long way.  I can't wait to see where she'll be in another four months.

Wednesday, January 13, 2010

Here's to Paul Ceretti

This is Delanie and Mackenzie Ceretti.  Their father's name is Paul.  Both children are severely autistic.  Unfortunately for Delanie, her progression in Ontario's Autism Intervention Program is not sufficient and her funding is being cut to allow another child to take her place.  Paul Ceretti did not let this go and took the Ontario government to court to have a judge review the evidence to cease her therapy.  The judge agreed with the ministry and Delanie's funding will now cease.  Delanie will transition to school supports; Mackenzie will continue to receive ABA therapy to catch her up with her peers.

I am completely torn on this decision.  On the one hand, intensive ABA (known as IBI in Ontario) is designed to be effective for two to three years, and not every child responds to it, although almost all children will learn new skills using it.  One could make the argument that there are only "so many dollars" in the budget and the government needs to use those dollars the best way it can.  However, I don't know what progress Delanie has made or on what basis they cut her off.  Perhaps she was making great progress.  However I do agree there is immense pressure to get children out of IBI to keep the waiting lists from growing even longer than they are.

Now, on the other hand, in our socialized medicare system, how many dollars are spent daily on patients who are terminally ill or unlikely to recover?  In our system, we spend dollars until the patient is better or dead.  One could argue the way to stop our ballooning health care budget from continuing to grow is to make better health care dollar decisions.  But it would be an uproar and a media frenzy if a hospital ever told a patient they were discontinuing treatment because they were not responding "well enough" to the treatment.  So in medicare, we keep shoveling money into the system, but for treatment of autism, we maintain our budget.  Let's see how long that lasts in the next generation as autism continues to become more common.

Here's to Paul Ceretti.  You are a brave man and a fighter.  Let's hope I can fight as hard as you can for my own daughter.  I hope I'm up to the challenge.

Monday, January 11, 2010

Waiting to Wait

The local provider of autism intervention where I live is the Thames Valley Children's Centre.  I am happy to report that after eight weeks of "waiting to wait", I can report that Alanna qualifies for the autism intervention program.  Now that we're done waiting to be on the waiting list, we can officially be on the waiting list.  How long you ask?  I don't know.  They won't say.  In fact, the latest from Thames Valley is that there is no "waiting list".  The waiting list for service is a constant thorn in the side of the provincial government, so the latest "trick" is to pretend there isn't one.  After all, once accepted, am I not "receiving service" by attending seminars on what autism is and how it is treated?  I beg to differ.  While I appreciate the politics of this issue, a waiting list is a waiting list.  Either your child is receiving ABA treatment or they are not.  Many are not and if you are unlucky enough to come from a lower income family, you are on your own.  While it is a sacrifice for us to pay for Alanna's therapy at least we are capable.  If you are only making $35,000 a year, paying $30,000 a year for therapy isn't going to fly.  This idea of "no waiting list" is smoke and mirrors designed to confuse parents who do not know much about autism and particularly for those parents who "rely on the system" to take care of their children.  If autism intervention providers in Ontario can convince people that they really are receiving service, then there is no political problem for the current government.

To be fair, the "behaviour coach" is probably invaluable to many parents who have not started an ABA program themselves.  We will certainly take advantage of this service, but it is not the same as IBI, and that is where the gains are made.  Early intervention should be a priority, yet children waste years of potential gains because they are forced to wait.  It's sad.  They have such potential if we would only invest in them.

Sunday, January 3, 2010

Overcoming Your Grief

The first duty to children is to make them happy. If you have not made them so, you have wronged them. No other good they may get can make up for that.   
                            - Charles Buxton

Many parents claim their goal in life is to ensure their kids are happy.  If they can somehow accomplish that, they have succeeded.  I can see how that might be appealing.  In today's "non-judgmental" culture it alleviates the parent of all responsibility because they can claim their children made choices they wanted to make because it made them happy.

This is me minutes after Alanna was born in the hospital.  My eyes are closed, mostly because I tend to do this in pictures, but also because it was 2am and no one had slept in 40 hours.  It's amazing, seeing your child being born... completely indescribable, really.  You just have to experience it to understand.  In the hospital, you tend to get hours of time alone with your child sleeping.  I used to pass the other fathers doing "baby duty" - rocking and moving their sons and daughters while their exhausted wives attempted to recover from the ravages of childbirth.  It seems rather silly, but in those moments when you are staring at your child's perfect face, marveling at your fortune, your mind tends to wander.  I remember thinking of her entire life - from the moment we got home to the hospital, to her crawling, first words, the first time she said "daddy", going to school, playing sports, graduating, meeting a boy, getting married, and having her own children.  How selfish was I, planning my daughter's life just as her life was barely beginning?  Yet I know I couldn't help it.  You dream for your children.  I know I am not alone in this.  Holding your newborn girl, you can't help but think of all the possibilities for her life and being excited to start the journey with her.

But life is rarely what you dream it up to be.  When I discovered Alanna was autistic, it was like all my hopes and dreams for her were sucked away into a black hole and all I could see was darkness - a void, an unknown future and no way to get a glimpse of what it could be or what I could hope it to be.

There is truly a grieving process that occurs when you discover your child has a disability like autism.  You let go of all your expectations and start to live day by day.  But even day by day, you grieve.  Today I was trying to play with Alanna, to engage her - share enjoyment, feel like I was something other than a rock on the floor (which maybe could have been more interesting to her).  Some days I feel like I spend hours with her without spending any time with her at all.  We are in the same space but completely different worlds.  It's painful knowing that my real little girl is trapped inside - the girl that I am beginning to see... but so often she is beyond my reach.  If I could run off and rescue her somewhere, I surely would, but it's not that easy.  I have to tear her out of herself, gently - slowly, so as not to hurt her in the process.  Some days I feel like no progress has been made.  She is still trapped in her own world.  But then I look back at where she was and marvel at how far she has come.  The fleeting glances, smiles, and time we really connect - they are short, but come more often and stay longer.  If I can focus on that, hope remains, and some days that is the only thing that keeps me going.

As a man, I feel the need to "fix" problems, and if I can't fix it, it eats away at me inside.  But I'm learning I can't "fix" autism.  I can only make it better, one day at a time, one moment at a time.

In a way, I think I have an easier time than many parents.  Despite Mr. Buxton's opinion, the first duty of a parent to their children is to love them, and they may not be happy about it at the time - perhaps never - but loving someone is not the same as making them happy.  It's doing what is best for them, even if that is the harder choice.  It's about sacrificing for them.  Perhaps for me, Alanna will be happy just because I love her.  She will be happy when she pleases me.  Or perhaps she will recover so that she takes an adult perspective and me loving her will not be the same as me making her happy.  I don't know how it will go.  But I do know she will have her own life, fulfilling the purpose God has fashioned for her.  It's not what I expected, but it will be amazing.  If I can get past my grief, I can feel pretty hopeful about that.

Friday, January 1, 2010

Sensory Processing and the Autistic Child

Interestingly, the DSM-IV definition of autism never mentions "sensory processing dysfunction" as a condition for autism.  But almost all children on the autistic spectrum seem to have problems with their sensory processing.  As a parent of a child on the spectrum, it's important to be aware of your child's sensory dysfunction and his or her triggers.  Most children are either over-stimulated or under-stimulated in a particular sense.  The best part of this is that this can flip-flop at a moment's notice and lead to a "meltdown".  What's a meltdown?  Is it like a tantrum?  Many people look at Alanna (who is 25 months old) and think her meltdowns are tantrums.  After all, she is 2.  But there are important differences between the two:

  • A tantrum is usually caused by a denied request for something Alanna wants.  She cries and gets upset, but the cause is generally clear and the tantrum eventually eases.
  • A meltdown is almost always caused by sensory over-stimulation.  Usually these are sudden occurrences that seem to have sensory stimulus (e.g. bright lights, loud noises, sudden odours) and continue to escalate until the stimulus can be removed.  In many cases, we do not know the cause of the meltdown and it's only resolved by moving her to a new location (usually going home or at least getting in the car).  A meltdown is not my toddler expressing that she is not having her way - she is expressing her discomfort and pain the only way she knows how.  I try to think of it like this:  if she is bothered by lights and the meltdown ceases when I turn them off, how would I feel if my normal lighting was 100 times brighter?  Eventually it would overload me and I would probably close my eyes with my face in the floor.   
Every sense can be impacted, even some you probably don't even know you have:

Does your child enjoy looking at lights?  Do visually stimulating books and toys capture their attention?  Did your child spend a lot of time staring at your Christmas tree?  If so, then your child is probably under-sensitive visually and seeks visual stimulation.  Other signs include staring at objects at weird angles (Alanna often stares at objects very close up or upside-down), wiggling hands in front of one's face, or short jerky head movements.  Alanna does all of these things.

On the other hand, if your child squints their eyes in normal light, enjoys dark rooms, avoids sunlight or becomes agitated with visual stimulation (think lots of lights and colours and movement), then they are potentially over-stimulated.  Alanna varies between the two - she is generally under-stimulated but can become over-simulated very easily.  Turning off the lights helps restore order.  Some days an exit sign can be very scary; other days it's funny and it's worth laughing at.

Most autistic children are under-stimulated by sounds.  They do not respond well initially to aural stimuli.  Most autistic children have to be taught to respond to their names or notice when a noise is occurring in their environment.  Alanna has slept through a smoke detector going off right outside her door for several minutes.  Not a peep.

On the other hand, some children may be sensitive to certain noises.  Alanna has always hated clanking cutlery.  She usually cries and puts her hands over her ears to tell us this noise bothers her.

The sense of smell is sense where we've been lucky.  Alanna seems to have a mostly normal sense.  Most odours don't bother her and yet she doesn't seek it out by smelling everything or smearing her feces on the wall to get a good whiff.

Many autistic children are picky eaters.  Alanna is over-stimulated and is very sensitive to many foods, including any vegetables because they tend to be bitter.  Other children may be under-sensitive and mouth or lick inedible objects or eat dirt (pica) to stimulate their sense of taste.


Alanna craves touch.  She loves deep pressure and seeks it out by rubbing her body with objects one would normally find uncomfortable. She also loves enclosed spaces (such as between furniture and the wall) because it simulates her sense of touch.

On the other hand, she is very sensitive to certain textures which does not help her picky eating.  Many other autistic children are over-sensitive to touch and resist hugs, affection and being touched in any way.  Such children also tend to hate clothing and have to learn how to wear clothes without being bothered by the sensation.

Children who are under-stimulated by movement crave it.  They'll run around all over the place, enjoy bouncing, jumping, climbing.  Alanna's sense of movement is very under-stimulated.  I could put her on a roller coaster that would scare me and she would probably enjoy it.  She loves vestibular games like "airplane".

Over-stimulated children may not like fast movement.  They may be afraid of escalators and dislike vestibular games where their bodies are moving around quickly.

This sense is an odd one because most people don't think about it, but it's really important.  It essentially tells us where our body is in space.  Without it, we have difficulty with balance and motor planning.  As is typical with many autistic children Alanna is clumsy and struggles with complex motor movements.  Motor planning is the ability to plan and carry out a skilled, non-habitual motor act in the correct sequence from beginning to end. Incoming sensory stimuli must be correctly organized to result in an appropriate, coordinated motor response. The ability to motor plan is a learned ability which can be generalized to all unfamiliar tasks so that the child does not need to consciously figure out each new task he faces. A child with motor planning problems may be slow in carrying out verbal instructions and often appears clumsy in new tasks.

How do you deal with sensory issues as a parent?  I'll get back to you on this one.  We are engaging with an Occupational Therapist for help here, but unfortunately their are no private therapists in this region (public therapists come with - you guessed it - waiting lists) and we have to commute to find this help.  Our therapist is at Blue Balloon in Burlington.

Our latest issue is the bath.  For several weeks Alanna will love her bath, and then hate it for several weeks.  We're in a hate period.  She has a complete meltdown in the bath, but it's not optional so we endure it.  I suspect it has to do with the feeling of water on her skin but I'm not sure.  She knows the word "bath" and will start crying if you tell her it's time for one, then look at the water pouring into the tub and run out screaming like you're about to give her a root canal without anesthetic.  It's heart wrenching.  But she needs to be clean.