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!

Another Year

So this is the third anniversary of this blog. And with that, I look back and take stock of where we are in our journey. And while we still have a long way to go, and progress feels like it's going at a snail's pace, there's lots to celebrate, too.

Fox still doesn't have any verbal words, but his vocabulary of signs has really come along and he is trying to make sounds a lot more. Our work with RDI has also been progressing - Fox is trying a lot longer at a task before checking out or having a meltdown, and he's starting to understand non-verbal cues like pointing. Further, he's even spontaneously pointed himself! He's spontaneously labeling and has become a lot more verbal - we're not able to pick out any words yet but it's a step in the right direction.

As much progress as he's been making, I feel this year was a big one for Lisa and I as parents. Every time I update the blog there's typically been numerous updates in our situation and life has really felt that way. You can call it our "Parent Education Phase" as we've become more conversed in the different therapies, treatments, etc that we navigate on a day to day basis and met with other parents who are dealing with the same issues we are.

This past Thursday we went to the Kidsability School for a Registration and Information night, and met with Fox's new JK teacher. We don't want to get ahead of ourselves but it looks like a really exciting program. Not only will they be doing therapies in conjunction with the kindergarten curriculum, but the class size is only six children, with 5 adults (inlcuding teachers and volunteers) supervising. Some of the therapies they've done in the past include horseback riding (Hippotherapy) and music therapy.

So, we're off to a good start. Hopefully, we've laid enough foundation for the progress to really start ramping up this year!

Busy Weekend

This last weekend has been pretty busy with Fox-related events but surprisingly. Each day could probably be a post in itself but I've been lax enough; if I put it off anymore, it's likely this blog will never get updated. Let's recap, shall we?

Saturday:
We attended the second session of the "Before the School Bell Rings" series at Kidsability. This series is for parents of special needs children that will be entering the school system. The first session was apparently cancelled due to lack of registration, which was very frustrating.

This session consisted mainly of a panel of parents whose children had started school in the fall, and they related their experiences, obstacles and generally helped to give an idea of just what we should be expecting going forward. I don't know if we picked up any new critical information, but it was still useful to reiterate things that are important to keep in mind. Also, it would probably have been more important to attend if we hadn't gotten into the Kidsability school and were faced with the prospect of sending Fox to our home school instead.

Sunday:
We went to a presentation at the Integrated Centre for Optimal Learning, (or ICOL). This one basically gave us more information on what they do at the centre, their approaches and philosophies. They advocate a more holistic approach and forward thinking techniques such as working movement into the learning, and utilizing neurofeedback. This last is something I don't fully understand yet so I'll have to come back to it in a future post. But the basic idea is that the subject is hooked up to a machine, which monitors their brainwaves, and provides visual and audio feedback, in an attempt to reknit the neural pathways in the brain into a more connected whole. I have to admit that I'm not totally sold on some of the more radical things they discuss, like "crystal children" and what-not, but it's non-invasive and the educational bits actually seem pretty solid (reminds me of the Montessori approach, for one), that we're willing to give it a try. I especially like that they work on an individualized plan for everyone of their patients.

Monday:
We went to a seminar about Oral Motor Therapy put on jointly by the Waterloo Region Family Network (WFRN) and Waterloo Region Down Syndrome Society. This one shows some promise. The speaker, Sara Rosenfeld-Johnson, is a speech and language therapist and founder of SRJ Therapies and creator of TalkTools Therapy products. She's been doing this for a long time and it shows; she was quite adept at explaining the technical ideas behind her therapy in an accessible way that was easy to understand. I really like it when I can make sense of a particular therapy or technique because then I understand the importance of it (a point she herself makes). She covers the basics, such as the difference between speech and language (speech is the production of sounds whereas language is the ability to express and receive ideas, more or less). Speech is generated from the movements of your mouth. Specifically, your jaw, tongue and lips. Some special needs children, particularly those born with low muscle tone, will in turn have weak jaw and tongue muscles. So right off the bat, this shows why speech would be difficult for these individuals - it would be like expecting someone with weak arms to lift a heavy weight: even if they know exactly what to do, they just don't have the strength to do it. Another big issue is tongue placement. A lot of children basically train themselves to put their tongue forward, which is really bad for speech - most of the sounds we produce involve the tongue being anchored in the mouth properly, and so forward tongue placement makes it pretty much impossible to do.

So then, the therapy attempts to strengthen all these muscles and correct the tongue placement so that the subject is physically capable of efficiently moving their mouth to produce speech. This is accomplished by doing exercises with the use of specially designed straws, chew toys and horns.

Anyway, we saw enough of Fox's issues reflected in what she said to be hopeful that this therapy might work, so we've ordered the kit. We'll give it a try and report back on how it goes.

Tuesday:
We went to ICOL for Fox's first session on the Zengar neurofeedback machine. It seemed to go well: Fox was quite calm and relaxed in the environment and seemed quite happy to sit there and stare at the screen for the whole appointment. They also seemed really impressed with his readings, but since I don't understand this neurofeedback stuff well at all, I'm not quite certain of the significance. We're going to give it a try weekly for about ten sessions and see if it's working.

So as you can see, we've got a lot on the go, and this doesn't include the fact that Fox still sees an SLP on Thursdays and that we are still doing RDI. The work is never over.

Pleasantly Surprised

So, as I mentioned back in an entry a couple of months ago, we registered for the Kidsability school but were not setting our expectations too high.  After all, there were over 3 times the number of applicants than available spots, and our luck with these kinds of things has never been great.  Also, it’s better to set low expectations and be pleasantly surprised.  Well, I am pleased to say that we are pleasantly surprised at being accepted into the Kidsability school in the Composite class!

While we were hoping to get into the class that specifically targets speech and communication, we’re happy that he will be in a program that should be more understanding of his needs and challenges, and who knows – this may turn out to be a better fit for him in any case.

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 

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.