Fourth Year On

And here we are, four years on and no update in a year.  Where are we this year?

An interesting question, as Fox is wrapping up his first year in school, at the Kidsability school.   Today we had a Transition meeting where a bunch of Fox’s current educators handed off information to his new ones, as we plan to send him into senior kindergarten at Edna Staebler Public School.  It was interesting, but Lisa felt that it seemed really early to be having the meeting, as there’s a lot to go through, and she’s worried they won’t be able to keep track of it all and remember the relevant bits when September comes around.  Maybe it’s my recent frustrations at work with having ill-defined requirements that change at the eleventh hour, but I actually don’t have reservations about that and am glad it’s out of the way now.  Hopefully this means that we’ll have an open dialogue back and forth for the next little while as things solidify.

No, my biggest worry is still whether or not Fox will be able to get anything positive out of the school experience at all, to be honest.  We observed him at the Kidsability school several times, and I have to say I’m not confident that he’s at the developmental level where he’ll be able to sit and attend on his own… yet we’re not sure if we’ll even get an educational assistant next year for him.  Now, there are some things going in our favour for this, though this is definitely a good news bad news sort of thing.  With his habit of putting just about anything in his mouth and his new behaviour of running away from the teachers in the halls, he’s more likely to get the support he pretty much requires.  Finding the right balance between instruction and socialization is going to be tough and it makes me anxious just thinking about it.

As you can imagine, there’s been a lot of changes over the last year.  Fox started at Kidsability school in September, and his IBI started up in October.  After some bumps in the road, we seem to have found a system that works for us with two junior therapists that we are happy with.

In December, Fox took some Audio Integration Therapy, which really seemed to calm him down at a time where he was really acting up.  It’s impossible to say for sure with all the variety of therapies that we do, but we think this was also around the time where he started to be more vocal again.

We have also been investigating the Musgatova method which works on integrating reflexes into the body as they are the basis of all development (according to this theory, in any case).  Lisa and I have both gone to a couple of workshops each, and this method seems so promising that we’re headed to a week long camp in the summer to get a crash course in it.

We’re continuing our work with Relationship Development Intervention and seeing some gains here as well.  When we look back at where he was at the beginning, we realize we’ve come a long way.  A long way yet to go to be sure, but I have to be grateful of how much farther ahead we’ve gotten.

Unfortunately, speech still eludes us.  I think I’m going to stop harping on it at this point, and just be happy when this hurdle is finally jumped!

The Rundown

So as the first entry from me in a long time, let me first apologize for anyone following along at home (I know, all two of you).

In any case, in the last 8 or so months, there's been a lot of changes, as you might imagine. The quick rundown:

• RDI: We've been continuing with RDI, working on strengthening the Guided Participation Relationship. Fox regularly helps us do the laundry, or cooking. He especially enjoys making smoothies from fresh fruit. Still a long way to go, but as they love to say, "it's a marathon, not a sprint".
  
• IBI/ABA: We attended a course provided by Kidsability called the Autism Learning Journey. It's invaluable for showing parents how they can implement the IBI/ABA techniques at home on their own. A lot of this was review from things we had already read/seen, but I guess repetition is the key to learning, right? Regardless of that, there are still definitely a lot of things to recommend it. There were also some great insights that I took away from it regarding communication (at some point I'll go into the verbal operants), the analyzing of home videos is always enlightening and there was also a "Make and Take" session at the end, where we constructed various teaching aids. We also decided to take a break from our private IBI for now, for a number of reasons.
• Speech: Fox has come along but progress still feels frustratingly slow. He's actually saying some vowels properly, but consonant-vowel pairs seem mostly beyond him, and same with multiple syllables. This is definitely an area where we need a lot more work and practice.
• Music: We've started attending Music Together on Saturday mornings. Similar to Kindermusik, it's a childhood music program and so far both kids seem to be responding well to it.
• Naturopath: Lisa began bringing Fox to a DAN doctor to investigate if naturopathy and diet intervention would be a good fit for us, particularly because Fox has become such a picky eater. We've just recently discovered that Fox has an intolerance to egg and wheat, so now we're back to working on a gluten-free diet. Sigh.
• Community: Networking with other families at the various events and courses got us pointed in the direction of a new website, the Autism Spectrum Connection. It's intended as a social networking site that will serve as a hub to connect parents, organizations and individuals who live with/work with/are people on the spectrum.
• School: Schooling is a tricky subject for us. We've registered and are really trying to get into the Kidsability school. Here he will be working with teachers who have been trained to work with special needs children and should get the attention and assistance he needs, without us having to advocate every step of the way (at least, I hope). We've completed the referral process with the help of our SLP and OT, and are just waiting to hear back from them in March. Unfortunately, there's no guarantee that Fox will be accepted, so we're also planning to sign up at our local public school as well. We believed we'd be getting a lot of help from KW Hab, but they strangely switched out our resource last month at the lousiest time. Not surprisingly (but frustratingly nonetheless), the our new resource hasn't really brought up anything about the whole process - even though she supposed to be our liaison to the school. I'm not looking forward to all the extra work we'll have to do if the Kidsability option doesn't pan out, but I think expecting the worst means you're more likely to be pleasantly surprised. In any case, we go to our local public school tomorrow morning to register, meet the principal and a teacher possibly.
  

I'm sure there's a lot I've missed or glossed over and I'll try to elaborate if I remember to, but that's a good start.

:Duan

A Year Later

So it's been a year since I started this blog, marking when we started looking at Fox's developmental issues in earnest and trying to correct it.  So how has the progress gone?

While it's been slower than I would have liked, I have to admit that we've come a long way!  Fox is making a lot of sounds, he's got a lot of signs and I'd even say he has a few "words" (even if they're just what they call "approximations").  For example, to say down Fox will say "da".  It would be nicer if he was initiating conversations more but baby steps, right?

What else is going on... well, Lisa's been attending the More Than Words program at Kidsability, which is a parent-led speech program for children with developmental delays like Austim.  And we finally are off the waitlist for Occupational Therapy at Kidsability and will be starting OT shortly.  And Fox has been attending school at Westvale for the last little while and is really enjoying it so far.

We've also been working with our RDI consultant with different activities.  And of course we are still doing ABA and we're on the waitlist at ErinOaks kids for IBI.

If this sounds like a lot of stuff, it's because it is!  This is not to mention all the other stuff going on in our lives, like taking care of a 6 month old.  So I think all things considered we're doing alright.  We've decided to pull back from RDI for the summer to allow time for the other programs we're attending to be over with, so that we can focus more effectively.

The next big thing is potty training.  In consideration of all that was going on and the fact that it was still pretty cold, we decided to push off going cold turkey on diapers until the weather got nice.  Now that spring has apparently sprung, we'll be starting that any time.  To be honest with you, I'm not looking forward to it - toddler poo is gross!

:Duan 

Introduction to RDI

Keep in mind the following is as I understand it right now... there may (almost definitely will) be updates as I gain a greater understanding.

RDI In A Nutshell

So what is RDI?  Relationship Development Intervention is a process for remediating (or correcting, lessening) the core deficits of autism.  RDI does this by focusing on (not surprisingly) relationships.

The basic idea is that autistic people tend to be afraid of social interaction because they are uncomfortable with changing situations.  Because of the way their brains have developed, the world is a particularly frightening place.  Like anyone, they try to make sense of their surroundings by finding patterns.  So when they find something that works, they tend to do it over and over.  It is positively reinforced because it's successful.  The problem is that they get into very rigid patterns.  So that if something goes just a little wrong, they become unable to deal with it.

This difficulty with changing ("dynamic" in the jargon of RDI) situations is considered to be key to the core deficits of autism, and what distinguishes it as a disorder.

Unlike "neurotypical" children, there is a breakdown somewhere and so the autistic child fails to build on these basic social skills, which has a snowball affect in hampering their development.  RDI researchers have looked at all the skills that a normal child picks up naturally, and break them down so that your autistic child can learn them as well.  The idea is to slowly introduce the challenge that causes them to think, but is within their ability to handle.  Doing this builds confidence in themselves and eventually they will be more okay with change.

Basically, IBI focuses more on "book smarts" skills, skills that would allow you to function in a classroom.  RDI focuses more on social skills and "street smarts".

No Deviant Parenting Here!

So we met with our RDI consultant and she was quite personable.  She set up a camera and had us play with Fox for a bit while she taped it, which was a little disconcerting at first.  Afterward we met with her and she assured us that we have not picked up any deviant parenting.  This can apparently affect parents of children on the spectrum, where they have been trying and failing to engage their children for so long, that they pick up bad habits.  Luckily we're new enough at this that their hasn't been time for any of those to form :)

A Little Behind

So I haven't updated in a long time. By now we've had several meetings with our consultant, we've gone through a lot of the parent training (as RDI is a parent directed program) and we've done some work on child objectives.  More on this to come.

Complex Team Assessment

So we got the results of the Complex Developmental Team Assessment from KidsAbility in late November, but I've been busy with a colicky newborn to do any updates. I think I'll just go for smaller bite-sized updates rather than big sprawling affairs, as that seems more likely that I'll do more regular updates.

So, onto the summary: it should come as no surprise that they determined that Fox has delays in understanding of language, expression of language, speech sound development and interaction with others. Recommendations that came out of the summary report were many, but here are some of the highlights:

- They feel that Fox would benefit from speech and language intervention in the Early Years Program at KidsAbility. Of course, that means getting on a waitlist. The program is the More Than Words program, which includes buying the book of the same name. Fortunately, we've already done that part so we're ahead on that score.

- They feel that Fox would benefit from occupational therapy through the Early Years Growth and Development program at KidsAbility (you guessed it, another waitlist). In the meantime we were provided handouts to suggest ways to address sensory processing, fine motor skills, pre-printing and self care skills.

- They suggested that we participate in the KidsAbility parent education group "Understanding Our Sensory World Around Us" when the next one comes up in Spring 2009.

- They also suggested sending Fox to a structured daycare/preschool setting on a consistent basis. I think this is the suggestion I'm most skeptical about. It seems like being in an environment where there are only a few other of his peers (as he is right now) would be better as his caregiver can give him more attention. Plus there is no lack of opportunities to interact with children of around his age; he just doesn't seem to have any interest in it. Still waiting to be convinced on this one, frankly.

- We also have access to a social worker, if need be.

- And a number of links to autism sites were provided:

• Geneva Centre for Autism
• Autism Society of Ontario
• Autism Society Waterloo Chapter
• BBB Autism Online Support Network
• TEACCH - University of North Carolina
• Canadian Autism Intervention Research Network - Canadian Research Consortium

The OT determined that Fox has issues with Sensory Integration, particularly with the tactile (touch), vestibular (balance), proprioception (body awareness), visual and auditory senses. I think smell and taste are only left out because he can't tell us that he doesn't like what he smells :)

We were given a bunch of strategies to try to address these issues, and picked up a couple of books on the subject: Raising a Sensory Smart Child by Lindsay Biel and Nancy Peske and Sensational Kids: Hope and Help for Children with Sensory Processing Disorder by Lucy Jane Miller are the two we've picked up for that right now. I'm reading through the first, haven't started the second.

In any case, the IBI therapy continues and I'm starting to notice some improvements. Fox has become much more vocal, actually going so far as to do some multisyllabic babbling. He also will imitate some sounds now, like 'ba' and the 't' sound. He also has a very wide array of signs that he seems to have mastered, the problem still being that he doesn't really initiate communication. Oh well, one step at a time, I suppose.

We also finally meet with the RDI consultant as well this Friday, which will be interesting to see how that works - hopefully I'll have an update on that Friday or Saturday.

There's always something...

So, I haven't updated in a long while. That's getting to be a habit of mine. We've been pretty busy in the five months since my last update, but let's see how much I can recount of that time.

So we finally did get in contact with a Speech Language Pathologist, who was running a home practice as well as working out of an office. She gave us a few tips and tricks to try but ultimately said that we might see better results going with an Occupational Therapist. An OT, at least for small children, focuses on play since that is the bulk of what a toddler will be doing. Normally, children develop through their play, and it was the SLP's thought that Fox wasn't really ready for Speech therapy. She also worried that he had developmental problems that was hampering his growth. In any case, she was closing down her home practice and hadn't decided whether or not she would keep Fox on as a client. So we stopped seeing her in August.

On August 2oth, we brought Fox in to see a pediatrician, who diagnosed him with autism. He scheduled a CT scan and some blood work, and we have the follow up appointment in the next couple of weeks. Kidsability was informed, and Fox was taken off the wait list for speech, and put on the wait list for Autism.

The blood work didn't turn up anything untoward, but the CT scan showed that his brain was "underdeveloped" (not sure precisely what that means, hopefully in the follow up we'll clear all that up).

Now, the prevailing treatment for autsim is Intensive Behavioural Intervention, or IBI, which is based off the principles of Applied Behavioural Analysis, ABA. As I understand it, it is based on modifying behaviour through positive reinforcement. The government provides IBI treatment to autistic children in our region through Erinoak. Unfortunately, the waitlist is 2 to 3 years :(. We had our intake meeting with the folks from Erinoak on November 6th, and we get the strong feeling that Fox won't qualify as having a severe enough form of Autism Spectrum Disorder and thus won't get access to it. However it's still up in the air and would be two to three years out in any case. In the meantime, we're paying out of pocket for IBI-therapists to see Fox 3 times a week for 2 hours at a time.

We also had an OT do several sessions with Fox and she had a few suggestions as well. She also pointed us to the direction of Relationship Development Intervention, or RDI. So we met with the local consultant and are interested in that as well. I ended up going to a conference which featured the developer of RDI, Dr. Steve Gutstein, and it looks promising.

Now with the bad news out of the way, there's also some good news: on the spectrum of Autism, it seems Fox will have a very mild form (what they call a "High functioning" autistic). While it means we get hammered in the bank account more (since the government only pays for therapy for more severe forms), it's a good starting place and hopefully means the treatments will be more effective. We've also caught it pretty early, earlier than most (a lot of the stories I hear are kids getting diagnosed around 4. That saves us two years on the waiting list :). The IBI therapy that he's been doing for the last three months or so, while it hasn't got him any more vocal, he did finally master a few signs (open, more, all done) and he's good with a shape sorter.

On November 7th, Fox's sister Ruby was born, and while he at first didn't want to have anything to do with her at all, he's at least touched her and tried interacting with her.

So in all, there's still a long way to go there, but it's progress.