MNRI Conference, part the second

So I had originally planned to do a daily update but then I didn't. After six hours a day of therapy, I was feeling pretty ticketed out, even though I wasn't the one on the table. I had written some compiled thoughts over the 8 days originally, but then Ruby went ahead and deleted the software I was using to blog and thus the draft I had done up. So my update will be much shorter than originally planned.








So in the balance, it was a mostly positive experience. We learned a lot and Fox was really good on the table, which surprised even us. He's been pretty good on the table at home, but then we've never had 6 one-hour sessions for four days straight, a one day break and then another four days. We had some really good MNRI specialists and even got some personal attention from Dr. Masgutova herself.

Our issue really was that we hoped to make a lot more progress in our time at the camp. Oh, they assure us that we'll see changes and we've seen enough improvements in the past to trust that what they say is true, it just seems like we didn't see see any miraculous changes as pretty much everyone else we know has.

In any case, the conference was so intense that we were told not to do any reflex work for a week afterward. So we're coming to the end of that week, and have started to plot out our next steps and Fox's home program. We've got a lot of work ahead of us. Let's hope things go better from here on out!

Location:Karlsfeld Rd,Waterloo,Canada

MNRI Conference, Day 1

So we had a good, if somewhat long first day. We all got up at one in the morning and by 1:30 we were on the road. Drove to Buffalo Niagara airport, and the drive was pretty smooth. The flight from BUF to MSP was quick and uneventful, and we got to the hotel by 9:30 central time.

Unfortunately, our room wasn't actually ready until 1:30, so we spent the four hours in the hotel lobby, at the hotel restaurant, in the hotel games room and walking around the hotel grounds. We have a pretty good knowledge of the hotel layout.

Finally, we had our initial assessment with Dr. Masgatova herself. And here we saw why she was the master. She would just tap Fox here, stroke the back of a foot there, and could rattle off a bunch of symptoms that described Fox perfectly. It was really amazing, and we're glad they taped the whole thing because it was really fast and we probably missed a ton of information.

We had also signed up to be part of a study on the changes in reflex development over time and how MNRI affects it. That meant another assessment right after the initial one. This one was quicker, because it involved testing motions, a lot of which were difficult for Fox to do. We'll see how much improvement will happen by the end of the conference.

The final activity of the day was to go to the initial meet and greet/ introduction and get a run down of what we're going to be doing over the next 8 days. Of course, Fox fell asleep. It was only a matter of time, having slept for only an hour on the plane ride all day (since waking up at one in the morning, I'll remind you).

So we're hoping for some good changes to come out of this and can't wait to get started!

Location:Northland Dr N,Minneapolis,United States

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!

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.