Letting Go

As a parent, acceptance of your child's limitations is a difficult journey.  Like so many of our kids, I feel like I make progress, and then regress again into a little ball rolling on the floor.

I see so many parents at different stages of their own journeys.  Some seem to make it quickly to a good place (or are very good at pretending), whereas others never seem to get there.  As my kids exit the early intervention stage of their lives and their trajectories become clear, I am getting to a better place.

How am I getting there?  I'll share - but keep in mind this is what works for me.  It doesn't mean squat for other parents.

I've realized this a long while - but it is a starting point so worth reiterating.  No amount of therapy, no diet, nothing I can do will remove the autism from my kids.  It is part of who they are, and though I'd certainly give them the cure pill, it's not gonna happen barring a miracle in our lifetimes.

This is who they are.  So instead of fighting their interests, I try to use them until I can't stand it anymore.  I can't fight them on this; they are going to win.  All I can do is try to introduce new things, but recognize the obsessions will always be.

This is who they are.  I can teach and teach, try a million ways to get them to learn a new skill.  But some things they will never be able to learn... and sometimes they are just not ready.  So we press on.

This is who they are.  This includes self-stimulatory behaviour... I can either watch them or join in.  If you can't beat them, join them.

This is who they are.  A will never live independently, so we do our best to prepare her as much as we can, but now recognizing it's not a race and there is no time limit.  The pressure is off somewhat - what we do has to work for the family as a unit.  T is a wildcard but we are planning on him always needing some financial support, as his language delay is not closing and employment is tough for those on the spectrum.

This is who they are.  I am starting to love them as they are.  I suppose that's letting go.  I am sure I will regress tomorrow, but it is enough for today.

New perspectives on leisure

So what do you like to do for fun?  When my kids were younger and I was still trying to "recover" them, what they needed to do for fun was what other typical kids their age would be doing for fun.  After all, if it is typical, then it allows for possible social opportunities.  It also makes them appear more normal, and recovery is close to normal, no?

When I was a kid, I was very much into video games.  Today, you might read that sentence and barely give it notice - what boy isn't into video games?  But this was in the 1980s, and back then, that wasn't so common for boys, and especially not so common for fathers of boys.  My Dad, God bless him, tried really hard to show some interest, but he just wasn't, and it was obvious.  He liked sports and the outdoors - fishing, camping, and the like.  While I enjoyed the outdoors with him as a boy I never developed the skills needed for his more challenging trips as a young man, and while I certainly enjoy watching an odd hockey game, sports buff I ain't - not even close.  He also is a very intelligent man, so to some degree he enjoyed debate and discussion on ideas, and there I could provide some challenge for him.

My point here is that despite my interests not being typical of boys at that time, they were my own interests.  Strange interests tend to result in some social isolation, because let's be honest - especially for men, relationships form around common interests.  The fewer the number of people who share your interests, the smaller the pool of people is with whom you can form friendships.

I wanted my kids to have typical interests so they could have friendships and be more like everyone else.  But as time has passed, I see I am fighting a losing battle (much like my Dad probably did).  What people do for fun has to be intrinsically fun for them.  As parents, we can introduce new activities and possibilities.  Some of those will be shot down (in my case, almost all of them), but it does not mean we should stop trying, nor does it mean we should take it personally when it is shot down.

Case in point:  puzzles.  Both kids have been introduced to puzzles; A had programming around this and T has been shown numerous times.  Both kids don't like puzzles much.  They don't mind the iPad versions, and occasionally I can even get A to sit and do one with me when she wants, but mostly, she doesn't like them.  Here's the rub:  how many adults do puzzles?  Not me, no thanks Jack.  Puzzles are a task to me.  Yet for some people they are quite relaxing.  I think most people do puzzles as children and move on.

I have come to the point of realizing that while I need to constantly introduce and teach leisure skills, I have to stop fighting their natural interests and instead work with them.  Yes, both kids play with some toys appropriately (T more than A), but A also thinks it's super exciting to watch things fall.  New this week:  place broom on deck.  Push broom over, flap at result, and repeat.  The old me would have said, "this is perseveration, let us redirect this activity."  New me says, "Clearly she is enjoying herself, this is pretty funny to watch."  T might arrange his letters a certain way and touch them, or watch a video at various volumes and laugh his head off.  Yes, it's weird, but to him, it's fun.

My rules on leisure activities have drastically changed:

• Activities cannot involve danger or injury to the kids, others, or property.
• Activities cannot become so rigid that they interfere with daily functioning (case in point:  T's letters were banished to his room because he got upset if we stepped on them - they are big foam letters.  Sorry kid.)
• Activities cannot be so solitary that we cannot join in - note this does not mean we always have to, it just means I have to be able to add some social component to it where we do it together.

So yeah - I suppose the Dad conversation is a bit different ... 

Question:  "What'd you do with the kids?" 

Answers:
"A and I had a blast rolling brooms and pots off the deck.  It's hilarious."
"T and I broke our eardrums listening to TuTiTu videos.  It's fun being somewhat deaf.  Only for a bit though."

And yeah, most Dads just look at me because what can you really say to that?  But the ones who know us best just say, "Sounds cool.  Glad you guys had fun."

They did.  They had a blast doing things their own way.  And isn't that what leisure activities are for?  Yeah, I get to suffer through it, but what parent doesn't?  If you want to have a relationship with someone you have to join them in their common interests, and with autism, the reciprocity of interests isn't very high.  So it's more work for us, but in the end, we get better quality relationships.  It's worth it.  Most days.

The Power of Observation

This is a Hoberman Sphere.  A got this for Christmas.  She's been eying it for some time now at the store.  It's been out, she's played with it, she likes it.  We were pretty pumped about this gift at Christmas and so was she.

Recently, while T and her were playing with it (and me as well), something interesting happened.  Bear with me - this is quite subtle.  T watched me spin the sphere and then copied it.  After several more repetitions of this across a few days, A also began spinning the sphere.  This is the first time ever that we have ever since A demonstrate observational learning.  T can do this but it is very much impaired compared to other children.

Observational learning is the foundation of being able to learn without direct instruction or training.  It is why many kids on the spectrum cannot learn very fast - everything has to be specifically trained and generalized.  This is contrasted to operant or classical conditioning or learning.  Observational learning is quicker and more natural.

If you think about how a typical classroom works - a teacher demonstrates something, or children work in groups and watch each other to learn.  They don't need to necessarily do something themselves to make an inference.

Observational learning can be as simple as watching another child go down a slide and noticing how to do it and when they might go.  A simply has never before demonstrated this ability, ever.  Everything has been taught explicitly, nothing has been learned spontaneously.

Such a simple thing, but a huge milestone for her.  Perhaps it will never be repeated...  but she has shown she is capable.  She has shown the ability is in there when motivated.

And that's pretty darn awesome.

Splitting the Spectrum

Recent changes in how autism is diagnosed have supposedly removed ambiguity about what autism is and what it isn't.  However, this to the benefit of clinicians (people diagnosing and treating autism), and not so much for the benefit of people impacted by autism and for the general public.

The previously separate autism spectrum disorders - autism, PDD-NOS, and Asperger Syndrome have been folded into "Autism Spectrum Disorder", or ASD.  Most people still use the term "autism" and "ASD" interchangeably, even though autism used to refer to classic autism, as defined by Leo Kanner.

So perhaps this made it easier for clinicians to diagnose autism... but it has made it harder for people living with it each day to get the supports they need.  The spectrum has become so wide it is meaningless, from the very capable to the very disabled.

People like Suzanne Wright of Autism Speaks who work to advocate for those with autism (and admittedly at the severe more disabled end of the spectrum) are slammed by many people who have autism (as it is defined now). 

The gulf has become too wide.  Parents with high functioning children towards the old Asperger Syndrome definition may be fretting about Johnny's difficulty making friends, whereas parents of low functioning children may be fretting about when their kid is going to get too big for them to handle when they become aggressive.  These two ends of the spectrum are so different - they present with such different problems that they are incompatible. 

Some people may argue that the low functioning end of the spectrum includes those with intellectual disability, and that is true.  But the high functioning end includes those with anxiety disorders and other problems too.

We can't keep classifying the low and high ends of the spectrum using cognitive ability as our measuring stick.  Intelligence in autism is very difficult to measure due to scatter in ability.  Instead of trying to roll up autism into one package with co-morbid conditions, why not recognize the reality that those who have huge difficulties with day to day living just don't have the same "autism" as those who do not?

I would like to see two autism definitions, perhaps "autism" and "Asperger Syndrome".  The key difference between these two diagnoses should be level of functioning across all areas outside of just social skills and social communication, IQ being irrelevant (I'd argue a person who has a high IQ but still cannot wipe their butt at age 18 is still as disabled as someone with a low IQ).

The high functioning "autism is a difference" crowd can go on with their mantra but under a different name.  Autism Speaks can "speak" for the low functioning crowd who have very severe difficulties living day to day.  There's just not enough in common to keep the spectrum together.  It's time to split it up and recognize the reality of what autism is.

It's Been a Long, Long While...

It's been a long, long while since I've posted on here.  Why?  Well, if you haven't been around, you might see something different.  Or check out the logo above.

What happened?

We moved.  Far.  Thousands of kilometres, in fact. 

You might think me crazy to uproot the entire family and move to the other side of the country... but hear me out, then you might change your mind.

I posted quite some time ago about the end of early intervention for A.

In that post, I asked... what to do?  Well, we figured it out.  We left.  We followed the services... and there are many to be had in Alberta.

Let's start with A.  Once IBI ends in Ontario, there is very little in the way of supports.  Yes, you can get the ABA program in Ontario now, but they are barred from entering the schools and there are waiting lists.  The quality of service is quite variable and the treatment protocol is indirect; it is a consultative service mostly geared to help parents cope.  Supports in the schools are even worse.  Every school board has its own policies in terms of what placements are available (and even when offered they may be full).  Boards have "specialists" but you're lucky if your kid's teacher gets a consult once a year let alone direct service.  In short, it sucks.  Life after IBI is not so good if after it's done, your kid still needs a lot of help.

Let's begin with schooling.  Ontario schools do a very poor job of educating kids with ASD.  Yes, there are some schools and some teachers and some principals who really do try, but they have no training (a weekend workshop on autism does not an expert make), and staffing levels can change at a moment's notice.  The biggest issue in Ontario is that special education grants go to the school board and there is no accountability in how that money is spent.

There are private school options in Ontario if you live in Toronto or Ottawa.  Tuition cost?  $56,000 per year.  Not affordable by a long shot.  What about in Calgary?  Yes, there is, and good news, it's $12,000 per year.  How is this possible?  One very important reason.  Alberta funds private schools and not only that, special education grants are tied to the student and go directly to the school in which they attend.  How about that?  What a logical idea.  The money that the government allocates for my kid is ... spent on my kid.  Neat.

Moving onto T on the school front.  In Ontario T would have half-time junior kindergarten (with us not living in a designated area for full day yet) in a classroom with 25 kids with zero support.  Here, T gets to attend a specialized pre-school with 10 kids, a teacher's aide, and a speech pathologist or occupational therapist in the room all the time.  No, not a once a year consult, but like direct therapy because these therapists are on staff at the school.  Not the board.  The school.  And we pay nothing for this, because guess what?  The school gets a grant for T and yet again, it's used to educate him.  Huh.

What about other supports?  There's lots:

• Respite supports so Mom and I can go out on dates or have time to ourselves.
• Overnight help for A when her sleeping is sucking.
• Community support to allow A and T to enjoy things typical kids do like swimming lessons or classes.
• Direct speech language, occupational and physiotherapy to help the kids development.
• Board Certified Behaviour Analyst to work with before mentioned team to work on behavioural issues and general learning.
• Support to hire one-on-one aides to work with the kids on skills.

There's no waiting list.  There's no bloated government bureaucracy that controls the funds or provides services at stupidly high rates when the private sector could do it more efficiently.  It's all about parent choice.

Still wondering why we moved?  We're not.  Well, maybe when it's -30 degrees outside.  But otherwise, not so much! 
 

An Unexpected Fatherhood

“Hope is the power of being cheerful in circumstances that we know to be desperate.”  - G.K. Chesterton

Something big is coming.  I can't talk about "it" just yet, because we need to get past a certain date before it can be truly public knowledge.

This something "big" - I have been wondering if it is the right decision for us lately.  I suppose I'm having cold feet.  I am pretty sure it is right, but like so many big decisions, doubts linger.  Then again, if I waited until I was 100% sure on all decision in my life, I would have never married or had kids in the first place.

I had a chance recently to share my story with a group of men at our local church.  Two points seemed to resonate the most with the guys - first, the fact that my ideal of fatherhood had to be (and still must be) radically redefined to meet the reality of my kids and their needs.  Second, the reality that A will be dependent on us forever, and T as well to some extent (it is too early to say and it could go either way with him).  T could do very well, adjust, and be relatively independent, or he could succumb to anxiety and aggression, conditions of which he is at great risk of developing.

To the first point, I need to grieve the fatherhood I wanted and move on.  It's an on-going process, probably life-long, but it's time to stop thinking about the fatherhood I wanted, and deal with the fatherhood I've been assigned, given, chosen for me. I need to find joy in that fatherhood and stop wishing for a different one.

To the second point, I feel like I need to explain (maybe just for myself) why we agonize over decisions.

If you don't have children, this analogy will probably be lost on you.  If you do, then you probably experience how quickly parenthood passes you by, one day, your child speaks a first world, the next day, they go to school, and the next, they are with their friends and you are the uncool parent.  In our parenting world, childhood is the same, but in slow motion.  Toys get used till they break either because they remain interesting for longer than most kids use them, or because their use is so ingrained change is too difficult for my kids to move on.  T re-discovers classics like Baby Einstein at age 4 (please save me from the Cat).  Milestones come, but oh, so painfully slowly.  I feel like my life is a 2 minute video on YouTube someone keeps playing over and over (maybe it's because my kids do this on a daily basis?)

Years from now, when your kids have moved on, when they are leaving for university or college, when they move out, get girlfriends and boyfriends, begin their careers, get married... years from now my kids will be at home with me, still moving slowly towards their own milestones.  A parenthood that so quickly passed for you, that morphed into something new so many times along the way, has stayed the same for me.  When you plan your daughter's wedding with her, I may be trying to come up with meaningful activities for her to do as school has ended with staff who have a high school education and a criminal background check.  When you retire and begin travelling, I will be trying to find suitable supported living conditions for my kids, praying they never suffer abuse or ill treatment.

When you die surrounded by your children and grandchildren in your old adage (hopefully with them involved in your end of life care), I will be praying my children will be well cared for and have a meaningful life when I am dead. 

My job as parent will never be over.  

I wanted my own dream of fatherhood.

I got an unexpected one.




  

More Than Talking

As my kids age and their disability becomes more noticeable, I am always interested to see how they are perceived.  One thing I have noticed that other parents notice is that children's developmental levels are often determined by how much they say.  The more sophisticated the language, the more they expect.  The less sophisticated, the less they expect.  And for typically developing children this is not such a bad measure, assuming ability to express one's self is as equally developed as everything else.

But not so for autism.

For this reason, my son T's ability is usually over-estimated.  People forget he has autism, even though his language is over a year delayed.  He is almost four and still in diapers.  He is very clever at putting together scripts and other things he has heard in context, enough to fool the listener into thinking he is saying very witty things... except of course, since I have heard them all before, I know better.  Now, I am not dissing my son, I love him and he is very bright.  I love how he is coping and love how he uses echolalia so functionally.  But it does fool people into thinking he has fewer challenges then he really does....

And then we have the opposite problem with A.  She can express her wants and needs with speech output, but verbally is very limited.  For this reason, people are unsure or assume she cannot understand much or is quite severely disabled.  Now, I will not pretend she is less disabled than T, because overall she is, but many people try to do things for her she is quite capable of doing herself.  All of her language is very delayed, but she understands most of what is said, can follow two step directions and has some strong daily living skills, relative to others on the spectrum.

So - please, please, please, do not judge based on ability to talk.  Talking is one area of ability, and a child may be perfectly verbal but struggle with self-help skills, emotional regulation, cognitive functioning, or behaviour issues.  Or a child may be completely non-verbal but has age appropriate receptive language and self-help or daily living skills and academics.  You cannot know one way or the other based on talking alone.  My best advice?  Presume competence and back off as needed.

Not your Typical Parenthood

Okay, I'm going to give you fair warning.  I am going to whine in this post.  I'm gonna share how I feel, and it not be right, and perhaps I'm a crappy dad for saying it, but it's on my mind, so I'm going to write about it.

I find it really difficult to relate to parents of typical children.

I feel like we're in this strange parallel universe where all parents, even those with special needs children, have at least one child who is typical.  This typical child produces, in some manner, some resemblance of a typical parent-child relationship.  I do not know a single family with multiple children, other than those I have passed in cyberspace, that have all special needs children.  Usually it is one child affected, but other children are "normal".

I was assisting in Sunday School today when I realized I had no idea if the behaviour I was witnessing was normal or not.  I don't know what normal is, I only know what my kids do... and that is not what most kids do.

I have written before about parent isolation.  Most people have what you would consider peer groups, and most of those peer groups have a very predictable trajectory:

• Single people
• Childless couples, usually younger
• Couples with young children
• Couples with school age children
• Couples with teenagers
• Couples with an empty nest / university aged children
• Couples with a full empty nest and retired

I don't feel I have a peer group.  It is difficult to relate to a childless couple... we don't have the flexibility or free time they might have, nor do we look forward wistfully to starting our family.

I suppose we are closest to families with young children since although our children are pre-school age, they are both delayed developmentally (A much more so than T).  Even still, it is weird watching toddlers go to the bathroom when your 3.5 year old wants his diapers.

So I say again - I don't know what typical parenting is.  I only know what parenting my children is.  And it is very different than typical.

I'll admit, I very much struggle with this.  I went away on a trip last week for work, and when I came back the next morning, I prompted both kids to say hello to me (both were busy with our iPhones watching videos), just like any other morning.  They did not appear to notice I went anywhere.  There was no running to me yelling "Daddy, daddy", or "what did you get me", or "how was your trip".  There ... was... nothing.  Nothing.  Like I never left.

Let me go out on a limb here and say most of us feel loved the most when we are known and accepted by others, and we know and accept other people.  When I say "know", I mean at some deeper emotional level.  "Life", such as it is, has been shared and some intimacy has been gained between people.  I don't feel that way about my kids.  It hasn't happened yet.  It may never happen.  I feel like emotionally I still have infants.

That makes me sad.  It's not what I expected out of fatherhood.

Yes, I know it's not about me.  But I can still mourn the fact that for me, fatherhood will be very different.  If typical moments or rites of passage of fatherhood come for me, it will be later, or perhaps never. 

Forgive me if I'm sad about that.  It is what it is.  But today what it is really sucks. 

Two Phrases You Should Never Say

 

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

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

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

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

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

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

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

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

  

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

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

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

 

Speech Is Not Language

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

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

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

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

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

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

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

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

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

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

I think Jeremy says it best...

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

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

 

What is your life worth?

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

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

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

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


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


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


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

New beginnings

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

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

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

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

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


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


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

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

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

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.

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!

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.

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.

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

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.

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?

Compassion

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


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


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


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


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


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


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


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