A Mother's Perspective

Well I finally decided to help out Duan with this blog. I've never really blogged before but it sounds like oodles of fun! It's been a while so here's an update of what's been going on since May.

Fox turned 3 and really enjoyed his chocolate cake!

We attempted potty training but it did not go well. We went cold turkey from the diapers, and tried to take him to the potty frequently throughout the day. He just loved sitting on the potty, he played with toys and read books, but wouldn't pee. In fact he would always pee about 5 minutes after he got off the toilet. We tried various things for about 2 weeks, but it just seemed like he wasn't getting it and it was starting to stress him out (and me!) so we stopped. We're thinking of giving it another go in another month or so, he's showing more signs of readiness now so maybe, hopefully it'll go better this time.

Fox didn't have pre-school in the summer and we took it easier on all of our other appointments, so we spent a lot of time at the park. Fox just loves being outside, he really comes out of his shell. It's really amazing how much he changed from the beginning of the summer to the end. At first he was afraid of the slides and he would only go down if I went down with him or if I held his hand down. Now he's completely independent on them and just seems to enjoy them more. He still as always loves loves loves sand, especially loves mixing water with sand and most of all loves mixing sudsy water with sand. We had a lot of fun on the deck with just these simple ingredients. He got a lot of exercise running back and forth between the kiddy pool and the sandbox with handfuls of sand to throw in the pool. We also played with oobleck a lot, it's a combination of corn starch and water and food colouring if you want, it's messy so he of course loved it!

Fox has really gotten into art over the last few months. He use to do a lot of colouring, but now he mostly loves finger painting. Just as proof of how far he has come, he use to freak out whenever he got his hands a little dirty, now he just dives into the finger paint! I tried a couple different recipes for homemade finger paint and then tried using corn syrup with food colouring, but I have to say the store bought non-toxic washable finger paint is by far the easiest to clean up! Plus, it doesn't give the mistaken impression that paint is delicious. I walked into his room once and caught him licking one of his old paintings, that's when the corn syrup painting had to stop :)

As for his different therapies, we have started one-on-one speech therapy at kidsability. It's going well so far, she noticed that when he makes sounds he is having trouble shaping his mouth, his mouth always falls to the side, so 'no' sounds like 'neh'. So we're practicing vowel sounds and he's being very good about letting us poke and prod his face while we do it. His ABA therapy is also going well, we recently had our 1 year assessment (can't believe it's been a year already!), and he has made a lot of gains since the last assessment. The one difficult thing is that every child with ASD is so different so there's no base of comparison to say that he's moving at a quick enough pace, but any progress is good and keeps us motivated to push forward. We also dove back into RDI. We're continuing to work on developing our guided participation relationship with Fox. We do this by working him into our daily activities and giving him a role in them. For example, he'll help us make juice, put dishes away, put laundry in the wash, etc. When we first started doing this he was so not interested in helping and it was difficult to keep his attention, but now it's getting so much easier! He's becoming so great at listening to instructions it's really making things around the house a lot more pleasant. We also did some occupational therapy over the summer, she focussed mostly on play skills, and we talked a bit about his sensory needs. The OT thought that he was really seeking out proprioceptive/deep pressure input, so told us to try to incorporate more of this throughout the day and it should help to keep him more calm and focussed. So we've been trying this, but to be honest it's hard to stay consistent and also difficult to know if it's making a difference for him. The good thing is that he enjoys these activities so at least he's having fun jumping on his trampoline, rolling up in his blanket like a hot dog, being lifted and flipped by Dad.

Other then that there's not much to report. Little Miss Ruby will be a year next month. She is crawling around and getting into everything! She just adores Fox and is all up in his face all the time. This has really helped Fox I think, he's really started to pay attention to her and other kids now. So it will be interesting to see how they interact going forward. She's just a little chatterbox, so maybe some of that will rub off on him :)

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 

What's going on

There's actually, as it always seem these days, a lot going on.  Besides the RDI that I detailed in the last post, we lost our home daycare provider.   It was quite the loss; we liked her very much, and giving Lisa some respite from the boy two times a week is essential with Ruby being so demanding as well.  So in the last couple of weeks we've gotten help from the Infant Development Program to look into a daycare program that would fit Fox's needs.

Currently we're probably going to go with Westvale, which is in the vicinity (maybe ten or twelve minutes away max), has a resource from KW Habilitation already (so they are familiar with special needs) and the facilities looked less distracting than the other place we toured.

Lisa also started introducing Fox to the world of toilet training.  We've been using pullups at night for a few weeks now, and we've been having him sit on the potty in the mornings.  Lisa attended a toilet training seminar earlier this week and we'll probably need to take a week to really put what she learned into practice.  But as he's getting very good at taking off his pants, and there have been a few - incidents, shall we say - we really need get him learning to use the toilet.

Lisa's also started the Word Than Words program at Kidsability this week.  More details on this in a later post.

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.

Upcoming

So again with the procrastination... but I don't really have time for a full update.  Instead I will put down a preview to whet the appetite of whoever might be following this as well as have a roadmap for going forward.

On the plate we have:

- Our first RDI appointment.

- Our 2nd RDI appointment (which is happening in an hour)

- What is RDI?

- The BOS system

- Books we're looking at.

:Duan

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.