School

From the moment of Fox's first day of school until his last day when we finally gave up on it, it was nothing but endless frustration, stress, extreme anxiety and minor panic attacks. Well that was my experience anyway, the damage it did to Fox seems to be much worse.

At the end of Fox's grade 1 year we had our 2nd annual "please leave our school" meeting with the staff. They always have a spot available for Fox in an ASD class just waiting for us to give the OK. I had no intention of doing this, I remembered his JK year in such an environment and he was miserable, I knew that he enjoyed going to our local school even if they were pulling him from the class a lot for being too noisy or rambunctious or whatever the reason, he still liked it. He loved his EA, she really understood him and was patient and respectful to him and had put in the effort to learn his various modes of communication limited though they were. She never got angry with him when he acted out or ran away or got aggressive so he trusted her and they had a great relationship. Too great apparently. We were told that he would have to have a new EA the next year because they didn't want Fox to be too attached to his EAs. The EA we heard it was going to be did not have a good relationship with Fox, in fact Fox panicked whenever they were together and went on a rampage destroying rooms and general behaviour that always comes out in times of extreme anxiety. I was tired of Fox being in a place that so clearly didn't want him there, I wondered how much of this he could feel and how much of these conversations were happening in his presence. So we went and checked out this ASD class. And much to my shock I didn't hate it. The teacher seemed to really care about her students, the class seemed calm, she even told me that she specialized in literacy development and had some ideas on how we could teach Fox to read. We had trouble deciding and went back 3 times to observe before we finally decided to do it. 

HUGE mistake. Fast forward to the new school year, completely new teacher and staff in the classroom. New teacher not interested in learning about Fox before class starts. Alarm bells were ringing off the hook in my head at this point but we were committed so we sent him anyways. It did not take long for it to all fall apart. He was more stressed then I have ever seen him, he was literally screaming himself to sleep at night. He was so aggressive and out of control, he was just in a panic all the time. We couldn't take him anywhere, he couldn't tolerate being in a store or anywhere with people he would just start screaming, in the car he wouldn't keep his seat belt on and once I got a lock for it he would then just attack his sister in the car. I mean there was much more but you have to wonder what could drive a kid to this, where he's so stressed out that he has lost complete control. Well according to the school he was fine, nothing was wrong, peachy keen jelly bean. I asked to come in and observe and they did not want me to do that, it actually took 2 weeks of persistence for them to finally let me in. I also found out during this time that they had him on a leash because I told them he was a potential flight risk, his teacher told me that he never tried to run, but yet they still walked him around like their little pet dog. Anyways I'm started to feel annoyed just thinking about this, so here is an excerpt of an email I wrote about our visit to observe him in his class. We were there for about 2 hours and it was over an hour before he even noticed we were there, he was just so zoned out, so mentally exhausted to even see us. 

Then it was time for one-on-one learning where they took him to a small room down the hall. In here he had to do 3 learning activities to earn time on the little trampoline. They used a token board. He was doing the learning activities ok, in that he knew how to do them because they were simply matching shapes and colours, very basic stuff. Everytime he matched a colour his EA asked what colour is it, and he would sign it and she would make him try to say it. I must have heard the phrase what colour is it 50 times. She was not accepting his signs as valid communication unless he verbalized, all the while his iPad is turned off and sitting on the corner of the table. At some point she must have realized we probably wanted to see her use the ipad so she asked him to find different colours on the ipad, find red, find black, etc. It was not being used for communication at all, it was a demand based task. After he did his 3 activities he got a break to jump on the trampoline, but she talked to him the whole time, raise your hands, let's count to 10, not a true break. He had clearly had enough at this point, but she brought our 3 more file folder games. She was very insistent that he do them all, and the behaviors started. At one point he got up, pushed his chair into the corner and then flipped it upside down. The EA asked me if he was doing it for attention seeking and I told her that he has been trying to tell her that he's had enough and is done

We had made a list of things we wanted to see changed, arranged a meeting with school staff, tried to put a plan together of how to move forward. But then the thought of sending him into that classroom again just made me feel so sick. I just couldn't do it to him anymore, I deeply regret ever doing it at all. So that was his last day of school and we've been homeschooling since. It took months and months to get over this trauma to the point where he could ride in a car again and go in buildings and be around people again. Way longer then he actually spent in that school. It's horrifying that he went through this.

Now that he can communicate with me I have been able to discuss this a bit with him. He was showing some anxiety this summer whenever his sister would talk about going to school and starting grade 1. When I asked him what was wrong he spelled "I AM AFRAID OF GOING TO SCHOOL". I asked what scares him about school he said "BECAUSE PEOPLE ARE MEAN AND ANGRY".

There has been a few times where he has asked me if he's going to go to school just to hear me say no.

One day I asked him if he could change something about schools to make them better for him what would he change, he said "I WOULD CHANGE HOW SCHOOLS HAVE NO LEARNING AND NO ACTION ABOUT SAFETY OF PEOPLE LIKE ME." When I asked him what the second part means he said "I DID NOT ALWAYS FEEL SAFE BECAUSE PEOPLE WERE NEVER NICE TO ME".

This gave me horrible flashbacks to his teacher telling me that he responds well to a firm voice. Makes me wonder how firm this voice was and how often it came out.

I asked him what we should name our homeschool and he said "MY LEARNING SCHOOL".

So my son's experience with special education is that he didn't learn anything except that school is a scary place where people are mean. Awesome.

After reading Horton Hatches an Egg together we talked about how Horton had to be very patient but he was rewarded in the end. Learning takes a long time just like hatching an egg, but there is a great reward for your patience in the end. I asked him what that reward is, he said "TO KNOW ABOUT LOTS OF THINGS AND TO UNDERSTAND EACH OTHER". Is the reward worth the effort "YES".

I'm going to end this now because it makes me so angry and I'm trying to let it go. So here is Fox's guide to happiness:

ALWAYS HEAR HAPPY THOUGHTS AND HAPINESS LOOKS FOR YOU. NEVER SEE SAD THOUGHTS AND YOU WILL BE HAPPY ALWAYS. 

Hopefully this positive attitude helped him through the hard times and he's able to find some peace too.

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.

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