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.

Aha Moments and New Discoveries

Throughout our journey in the world of autism there have been a few 'aha moments' (to use an Oprahism) that I'd thought I'd share today.

The first was during a trip to the pediatrician that gave Fox his diagnosis. I honestly haven't found the medical community very helpful at all when it comes to autism, and that seems to be the consensus among the other parents of children with autism that we meet along the way. That being said, he did help me understand why it has been so difficult to a) determine what causes autism and b) find a cure for autism. He said that autism is just a symptom that can come about many different ways. He compared it to a headache, a headache can be caused by dehydration, missing out on a cup of coffee in the morning or a brain tumor to name a few. So in the first 2 instances take some tylenol to cure the headache, but tylenol is not going to cure a brain tumor. So if they tested a drug or therapy or anything on 10 kids with autism, it might work great for 1 of them and not work at all for 9 of them so it would be deemed a failure, but it's possible that that 1 success had a different kind of autism then the others. The problem now is that they don't know what the different kinds of autism are or how to tell them apart. Anyways, it made sense to me at the time :)

The next aha moment had to do with our RDI program and just understanding communication in general. When we first started RDI we were told that we need to change the way we communicate with Fox. That we should be using 80% declarative language and only 20% or less imperative language. This didn't make sense to me at the time, I really didn't understand how you could do that with a child, I mean don't you have to tell them what to do! Then little Ruby came along, and she started showing an interest in everything and started pointing things out and looking back at me as if to ask me what it is. She takes an active interest in books when we read and is just so curious about her environment. So when I spent a couple days just taking note of how I communicated with her, it was probably 90% declarative language and only 10% imperative. It was just amazing to me and really opened my eyes to what I needed to do with Fox. It's always been hard to just talk to him about the things around him because it was like talking to a wall, he just didn't seem to care at all. I don't want to take all the credit for this, but I like to think that my change in communication style has helped this along, but he has started labeling things (with signs) and also pointing at objects and looking at me to tell him what they are! This is so exciting, because up to this point he has only communicated to make requests, not to experience share. He is also taking more of an interest in books, he'll actually look at the pictures on the pages now instead of just stimming off the page turning.

The final aha moment that I'll share with you is about something I thought was a problem, but turned out to be a very positive turn of events. A little while back, Fox started to ask me for stuff as soon as I came in the room, almost like a reflex. Then if I didn't bow to his every command he would get very upset. I found this distressing because it felt like he would be having a good time with his Dad and then I would come in the room and ruin everything. I mean who likes to be whined at all the time! Anyways, Fox's OT was visiting and she pointed out how Ruby would take Fox's favourite tractor and walk back and forth in front of him with it until he noticed, got upset and took it back from her. This is the only way she knows how to get his attention and boy does it work! His OT pointed out that that is exactly what Fox is doing with me, he knows how to request things from me and it is his way of connecting with me and getting my attention. It's interesting that she has caught up to him in some ways developmentally, and now hopefully they can start moving forward together. It's also nice that something that use to bother me now puts a smile on my face.

Now on to the new discoveries! We've been going to a lot of workshops lately and have learned of some new therapies that look interesting. We're always a little skeptical of things, but we're going to give a couple of them a try because they sound too promising to pass up. You never want to take on too much and end up stressing us out and Fox out, but we can always slow down again if that starts being the case.

The first thing we're looking at is something called Neurofeedback, which is offered through the Integrated Centre for Optimal Learning (http://www.icolsolutions.com/) here in Waterloo. We're going to check it out tonight, so I'll have more to say about it at a later date. My sister-in-law gave me a book about Neurofeedback a while back and it sounds very interesting (http://www.amazon.ca/HEALING-YOUNG-BRAINS-NEUROFEEDBACK-SOLUTION/dp/157174603X). It's all based on the idea of neuroplasticity and how you can always improve the neural pathways in the brain, it's never too late. When I spoke to the centre about it, they said it often helps with anxiety issues, which I think would be great because Fox has been showing signs of stress again lately, there's a lot of teeth grinding going on.

The next thing we're looking at is Talk Tools therapy (http://www.talktools.net/). I'm very excited about this because it makes so much sense to me. It's all about training the muscles of the mouth to strengthen them so they can do what they are suppose to do. It's suppose to help with speech and feeding. I've ordered the starter kit and am hoping to get it soon, so we can get started right away. It doesn't replace speech therapy, just supplements it with some muscle strengthening.

I'll also be attending a 4 day workshop on Reflex Integration in a few weeks. From what I gather this may be able to help Fox with his motor planning/coordination problems. I haven't found anything in the many therapies/treatments I have researched that can help with motor planning, so hopefully this will be the answer. We'll know soon enough I guess.

Lisa

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.

School Registration

So we headed down to the local public school (Edna Staebler) to register Fox for school and it wasn’t actually too bad.  We talked with a teacher and the principal and they came across as supportive and willing to work with us, which is a far cry from some of the horror stories we’ve heard.  Of course, it was really only the preliminary stuff – we just filled out the registration forms which were straightforward enough.  We’re still hoping to get into Kidsability, but this second option is not looking nearly as onerous as I’d feared.  Sure, we’ll still have to do a lot more ground work if we end up going to public school, but it’s amazing how the attitude of the teachers factors into making you feel at ease.

That said, we still need to decide whether we’re even going to send Fox into Junior Kindergarten.  The JK program is alternating full days, 2 or 3 times a week.  Fox has been doing alright with Nursery school which is a half day, but we’re not sure how he’ll do with a full day schedule.  It’s something to ponder anyway.

We heard back from our KW Hab resource and it sounds like the real work won’t happen for a while, so we have time to regroup and find out exactly what the next steps are.

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 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