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!

Avoidance and Resilience

Last night as Duan and I were eating dinner, Ruby was playing with a Busy Poppin' Pals toy and was getting frustrated with one of the doors that wouldn't close. It needs to be turned to a specific place or it won't close and she couldn't get it to close so kept asking for help. I jokingly told her that Fox solved this problem by just never opening that specific door, since the other doors are much easier to figure out, so that's some good problem solving. Then Duan said that it sounded more like avoidance to him, and he's so right. I've been thinking about this ever since, it's a very good point and really changes how I look at things. We talk a lot in RDI about Fox's resilience, so it was interesting to see the difference between a NT brain and an ASD brain at work. Ruby kept at it and was determined to figure it out and came for guidance when she needed it, whereas Fox just avoided the problem altogether and probably still doesn't know how to get that door closed. This came up again today when we were visiting with our RDI consultant. We were talking about his resilience and how he is making so much progress in this area, and it came up that Fox didn't start walking until he was very good at it. It happened at 17 months, he crawled and cruised for a long time and when he finally started walking he was very stable and was running that same day. When Ruby started walking at 12 months, she was pretty unstable for months and fell a lot, to the point where I was worried that something was wrong. But of course it wasn't, this is just the way it goes, practice makes perfect and she went for it and kept trying even though sometimes she fell. Fox on the other hand didn't have the resilience to try before he was sure that he was stable and would be able to do it right. It seems like he has a fear of failure. So then our RDI consultant pointed out that when he does make sounds and try to talk he can tell that it doesn't sound right and so he avoids it. I use to think that Fox's speech problem was only due to his motor planning problems, but now I think lack of resilience is also a major factor. To improve his motor planning he needs to practice, practice, practice so that his body will get use to the muscle movements and eventually not have to think so hard and put in so much effort to make different sounds. But because of his lack of resilience he's not practicing because he knows he can't do it perfectly. I was driving around yesterday afternoon and Fox fell asleep in the car, Ruby said 'seep' to tell me he was sleeping. I said 'yes Fox is sleeping', so she kept repeating 'fox seepee, fox seepee, seepee fox' all the way home. She learned a new word and was practicing it and had a big smile on her face the whole time.

I feel like I'm finally starting to really understand what's going on with Fox, and for the first time in a long time I feel like we're on the right track to really help him. I feel really good about everything we're doing right now. RDI will help us continue to build his resilience (among other things), Reflex Integration will hopefully help us with his motor planning (we've just begun this so time will tell), TalkTools Therapy will help him build the necessary muscle strength and oral motor planning for him to say the words once he finds them.

On and on and on we go....

Lisa

New Gross Habit

Latest gross habit: Fox will lick his hand, from palm to fingertip. Often preceded by touching something inappropriate (car tire, dirt). He also stuffs a good deal of his hand in his mouth now, when they are not full with clutching his blanket or tractor. This is not exactly something completely new - he will often eat non-food items if we give him the chance (ie, chapstick, playdough, lotion to name a few). However, it definitely appears as if this is happening more often and more intensely.

I suspect this is a sensory thing, but it's gross and so we'll be endeavoring to stop it. Of course, that means figuring out exactly why he's doing it, and to find an acceptable replacement and/or fix the root problem. Here's another fun thing about being a parent - having to figure out why your child is doing the things he's doing! As we were told on the Learning Journey into ASD, you have to learn to be a detective! Well, here's hoping we figure this one out soon, it drives me nuts!

:Duan

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