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.

Thanksgiving

I thought it might be time to start up this blog again. Last year we started homeschooling Fox and I'll go into why in another post. This past May we started teaching Fox using RPM (Rapid Prompting Method), you can read more about it here: http://www.halo-soma.org/. I will go into our journey with RPM and how it's led to Fox being able to communicate using a letter board another time as it's a long story. Today I want to share something I'm thankful for, Fox's first thankful turkey:

He spelled out what he was thankful for on his letter board and I wrote it on his turkey for him, he spelled: ALWAYS EATING, TURKEY, MY SISTER, KOMBU, MY BLOCKS, MOM AND DAD, BLOWING OUT CANDLES, MY LETTERS, UNDERSTANDING

Last thanksgiving my daughter and I made our thankful turkeys and I never would have thought in a year Fox would be able to express himself well enough to be able to make his own. He has an amazing mind and each word is such a gift. He told me he is fine with me sharing some of his writing on this blog so that's what I'll do. At the very least it will be a nice way for us to look back on everything Fox has accomplished. 

Year Five

This seems to becoming a yearly ritual, where I give a single update on Fox's progress on the anniversary of starting the blog before disappearing into the ether for another year.  So this year is no different.

First of all, Fox has been attending public senior kindergarten on Monday, Wednesday and alternating Friday mornings.  He has a modified day and is at school for about 2 1/2 hours.  Currently he has a dedicated EA which we love, his teacher is kind, caring and understanding and things are mostly good.  Mostly I must say, because the school board itself seems to be keen to change the system.  For our part, we send him to school to socialize.  He has IBI on his days off, so he's still getting the rote learning, but the piece that is a lot harder for us is to have peers to model behaviour from.

Of course this is the thing the school board seems keenest to change.  They keep trying to pressure us to put him in a segregated class with other special needs children, which we tried last year and felt did not go so well.  They keep telling us that we won't be able to keep our EA, even though we've already been accomodating enough to only send him to school for a couple hours at a time instead of the full day he's technically entitled to. And on and on.  We've filed for an IPRC, which will hopefully get everything in writing so that everyone's on the same page.

Besides school, this has been a big year for physical activity, with Fox taking part in skating, skiing, rock climbing and horse back riding to name a few of the things he really likes.

Fox has come a long way, and we're very proud of him.  He still doesn't have many words, but he does have a few verbalizations that are coming close.  So we should hopefully have another eventful year coming up!

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!