Alanna's Ensemble

We are signing Alanna's contract with Thames Valley Children's Centre tomorrow.  I'm pretty pumped to have Alanna's therapy team together.  Most of the team is existing from private therapy, but we have some new faces.  We have one senior therapist, four instructor therapists, a clinical psychologist and a speech language pathologist.  We can consult with an occupational therapist as needed but aren't in active occupational therapy with Alanna.  This mostly has to do with the fact that OT services are not covered by our health insurance, but also because Alanna's sensory issues, though significant, are not seriously distracting her.  I would like an OT to review an appropriate sensory diet for her though so we can be sure we're giving her the right inputs and fading out distracting inputs.  Alanna also has on-going issues with fine motor skills, feeding and using utensils.

So begins our journey with buttloads of paperwork.  I will learn the requirements tomorrow but I am sure there are lots of rules to follow, some sensical and others nonsensical.  But I'll do whatever paperwork is required if it means we get help!

Yes, I Am Afraid of Wheat

One of the first things I am often asked about when the topic of autism comes up is the gluten-free, casein-free diet.  We started Alanna on a gluten-free diet (we never eliminated casein because we deemed it too restrictive) some time ago.  Now that it's been several months, what are the results?  I'm not sure if it is impacting her behaviour much but a lot of the elimination problems seem to be better.  She still craves gluten though - Alanna likes to steal her brother's bread products.  We try not to eat it around her because, let's face it, that's torture.

Gluten-free products are expensive.  I want to take her off, especially in the light of this recent study out of the University of Rochester, but I'm too chicken.  Bok-bok-bok!  I don't want to lose any gains we've made.  So she's sticking to gluten-free until we can muster the courage to try to re-introduce anything. 

A Tale of Two Therapies

Okay, okay.  This picture is a little on the gross side.  But it's relevant to the theme of this post, so bear with me.

You can divide most autism therapies into two camps:  those that are done mostly by parents, and those that are not.  Some therapies lend themselves to either direction and indeed some research has been done in the ABA camp to see how allowing parents to run ABA affects outcomes.

In the "do it yourself" camp there is Floortime/PLAY, RDI, More Than Words, and biomedical options.  ABA can be done this way as well and many people do it.

In the "leave it to the therapists" camp there is ABA, standard speech therapy and occupational therapy.

Most of the "do it yourself" therapies involve therapists setting up programs, monitoring it and providing feedback to the parents.  But the parents do the bulk of the work, because after all, the parents are the ones with the children the most - at least, that is generally the way this approach is marketed.

There are definite positives to this approach:
1.  Training and supporting parents is much cheaper to governments who are expected to provide intervention for autism.

2.  Involving parents to this degree encourages them to accept accountability on how the intervention is working.

3.  Parents who are well trained are better suited to continue to teach their children long after the early intervention period.

But there are problems with it too:
1.  While we'd like to think most parents are the best teachers for their kids, some parents just aren't.  They are not going to do as good a job as a trained therapist.  They may lack the intelligence, or lack the time or energy to do a good job.  Full disclaimer:  I have done ABA with Alanna and after two hours with her my brain is fried.  I do not think a parent could realistically do this intensively and properly without help but that is just my opinion.

2.  Some parents need to work.  Many parents work but do not need to do so (I'm not talking about your neighbours who work to pay for the SUVs they got last month), but some, including single parents, do not have a choice.  In this case, the child is not going to properly receive intervention from a program training the parent because the parent may only see them in the evenings and on weekends.

3.  As a parent it is very easy to be lazy.  Add to that the pressure of turning every activity into something therapeutic and you have a stressed out parent.  I do try to incorporate all the principles of ABA and More Than Words into my interactions with Alanna, but it's nice that the "pressure it off" me because I know her intensive teaching time is taken care of.

4.  Some parents have multiple children.  It is difficult to provide the intensity of interaction with an autistic child when you have another, let alone three or more children!  Any time your child is spending off in their own world is wasted, and sometimes you have to let them do that if you have more than one child.

By the way, I should also note I'm not partial to the idea of universal government-funding for daycare (I am okay providing it for those who really need it).  Some people believe parents are idiots and the state should raise children.  I am not suggesting that at all.  We strongly believe in having a parent at home for kids and neither of ours go to child care.  However, I do think there is a case to be made for a balanced approach - one where therapists and parents are heavily involved in their child's intervention.

What's your take?

Relief At Last

Becca received an unexpected phone call today. Then she started to cry.  She busted into my office, breathless.  Her news caused me to go into shock for several minutes.


We have just secured a direct funding spot for Alanna from Thames Valley.  The earliest we expected this news was September.  Those of you who are paying privately for Intensive Behavioural Intervention (IBI) know this is the call you wait for.  It's like being told you just won $50,000 in the lottery because that's how much it costs to pay for IBI annually, done properly.  It will release us from a huge financial burden, assuming she can remain eligible for service until she goes to school.  Presently, Alanna is two and a half, so we hope the earliest they could transition her to school would be in a year and a half.  Hopefully she can remain eligible until she is five or six, unless she does so well she "recovers" (I use that term to mean she no longer tests in the autistic range in standard psychological testing.)


For those of you still on the waiting list - I expect you'll be happy for us, but also ticked that you're still on the list.  We have been very blessed, only waiting nine months.  Most people wait two to three years.  While the regional system in Ontario works pretty well for us, it sucks if you live practically anywhere else, especially in Greater Toronto or in the North.


The irony is, if we'd waited on the public system, Alanna would just be seeing  a developmental paediatrician now.  She wouldn't even have a diagnosis yet.


The system isn't fair.  But today, I can only look to the future with a renewed sense of hope about possibilities.  I'll take that.  I could use some hope.  We all could.

It's Harder to Understand Than Have Pity

I went this morning to our local Early Years Centre, which has a special program called "Dads Can Play Too".  It's a pretty awesome idea - I was impressed to see that even the play group leader is a dude.  I brought both kids; Nana was happy to help watch Tyler while Alanna was running around.  I explained to the lady at the desk that Alanna was special needs (and had autism) right before she took off and ran away (her timing was impeccable).  Alanna was not herself.  She played with almost no toys, had poor eye contact and wandered aimlessly.  She took crayons and threw them.  It was almost as if she'd regressed six months in six minutes.  I don't think I've seen her this "autistic" in a long while.  Many of the dads were staring at her.  When Alanna was younger, many parents often told me they would never know she was autistic unless I told them.  Now that she is almost 2 1/2, this is a much rarer comment.  The typical sign is her lack of speech - many 2 year olds at her age are talking non-stop.  It was obvious something was different just in the way I spoke to her.  As I have been taught, I always use simple speech with Alanna to help her understand what I am saying.  I speak slowly and repeat.  To a dad of a typical kid it would look pretty odd.  Eventually one of the dads I met (his son was playing nearby) asked me, "She doesn't talk much does she?"  I explained, "She has autism."  He nodded, happy with the explanation but I could tell he didn't really know much about autism.  When we were leaving, Alanna had a small meltdown and the women outside watched her with concern, looking at me and her with pity.  Everyone tried to be helpful and I tried to be gracious in accepting it.


When I left in the car, I cried silently as I drove home.  I couldn't help myself, it was too overwhelming.  Seeing Alanna "interact" with a kid her own age was heartbreaking.  Talking to the kid was so easy.  It was natural.  No saying, "good looking", or "nice talking".  Just an easy, back and forth discussion.  She is so behind, I thought to myself.  These things are so hard for Alanna.  I forget how hard it is for her until I see a kid her age and see how easy and normal it is for them.  


Looking back now, Alanna probably did pretty well. Six months ago she would have melted down and lost it... I wouldn't have even been able to go in.  But she went into a completely strange place with strange adults and kids and was able to cope.  She was not herself but I am guessing she was overwhelmed by everything and shut it out to cope.  She was immediately all smiles and more herself when we got home.  So maybe it wasn't a bad outing.  I'm trying to think positively here.  I know that many of Alanna's repetitive behaviours and unusual interests are greatly diminished from six months ago.  


But I learned something today.  I have to admit I'm much more compassionate to people with disabilities now that I have a daughter who has one (go figure).  If you see a child with an obvious disability (or even anyone for that matter), don't pity them.  They are coping and if you feel sorry for them won't make them feel any better.  When someone tells you about a disability, they want your understanding.  It's to inform you so you know what's going on - it's not an invitation for you to say poor parent, you have a child with autism.  I know Alanna has autism.  I'm just telling you so when she runs around flapping her arms and doesn't talk you know why.

OK, Now I Get RDI

I posted this article quite some time ago.  It was a pretty active post, with over 64 comments.  The gist of my post was that RDI was difficult to understand clearly without paying big bucks to have someone explain it to you.


Well, someone recently provided me a copy of one of Gutstein's earlier books, Relationship Development Intervention with Young Children.  Inside I was surprised to find not pages and pages of theory and anecdotes, but activities and exercises explaining how to move through the RDI stages.  Finally, something practical for me to look at without words like "dance" or "redo".  The activities are clearly laid out with goals that make sense.


What I've found so far is that RDI appears (at the early stages at least) to be a lot like speech therapy.  Some of the early activities focus on changing how you communicate with your child, getting the child to pay attention, and sharing enjoyment with activities.  A good speech program is Hanen's More Than Words, which has a lot of similarities with these RDI activities.  I like what I have read so far - these activities are practical and will help develop the skills I think they claim to develop.


One interesting thing to note is that my suspicion about needing some ABA to get started is probably true.  I often wondered what RDI proponents would suggest for a child who completely ignores the world around them.  Here's an interesting excerpt from the book I am borrowing:

A small group of children with autism appear oblivious to these methods.  They may monitor their communication environment so poorly that they do not even notice your highly emphasized, indirect prompts.  These children require an initial behaviour modification approach where they initially learn to respond to direct prompts (emphasis mine).

In other words, some children need some ABA to get started before one can even start these RDI activities.  Now that makes sense to me.  As Alanna has gained skills in communication and attention our ability to do these kinds of activities is increasing.


Lastly (and I expect to be flamed for this), Gutstein has claimed the reason he stopped publishing these activities was because the ABA crowd was de-constructing them and making them into behavioural programs.  I think he has a valid point, but I also think the primary motivating factor was to make his method proprietary and "license" it to franchisees, namely the RDI Consultants.  I am sure Dr. Gutstein has done well financially after making this decision.  I suppose I can't really fault him for this, but I wish he was more interested in helping parents of children with autism rather than making money.