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 

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.