Monday, November 30, 2009

At Queen's Park - day 76


The weather is sunny and so perfectly crisp. it is impossible not to smile and not to be in a good mood. Truck drivers are here to protest against 11-week driver testing strike. I am making pictures with my laptop since I misplaced my camera so effectively that I can not find it to this day. I hope I did not leave it on the roof of my car and parted with it for good.

Last night when I was cooking, I found on TV "Dog Whisperer". What a great show, and what a great guy! I saw the other dog training show before, but that dog trainer was doing more of the dog owner bashing - not that they do not deserve it most of the time. Cesar is different. He is gentle and funny. He talks a lot and demonstrates how dogs are very tuned in receptors and amplifiers of owners energy. Nervous owner will make nervous dog. Cesar talks a lot about "energy" people bring into the situation.

I was wandering what kind of "energy" I am bringing in into this world. And what Sebastian feels when he is around me. I think I bring a lot of frantic frequencies. I am doing this and this and that, and nothing really comes out right. I am fearful too. And universe proves me right, my fears and apprehensions prove themselves to be justifiable.

I know I should be calm. But it is hard when I can not concentrate and even remember what is the next thing I should do. In moments like that I resort to doing whatever I stumble upon. It creates problems, because important things often are not getting done on time. It is very scary way of living too . Like swimming in muddy water. But there are days when fog lifts up, and I feel past and future, and I remember, and I think for a moment that I can conquer whatever I have to conquer. Unfortunately those are sill only a fleeting moments, but they come more often now. I need to have more of those moments if I am ever going to be successful leader of the pack, even though the pack is the small one - Sebastian and I - we have a lot to overcome.

Sunday, November 29, 2009

Domestic life.

We slept eleven hours beside crack open window today. It is unusual for Sebastian to sleep that long. Maybe he grew half an inch last night ;) It is a very good sign that e is getting better.

I was planning on getting up early and doing some paper work, but instead I was dreaming about traveling to China. So I am well rested too.

I will cook a whole chicken to make enough broth and meat for all week. I have pumpkin pie butter almost ready to bake in a fridge but I have run out out of honey. I will make some apple sauce today too. Being so domesticated does not come naturally to me. It takes a lot of effort and planing. Not my strong points.

Saturday, November 28, 2009

Giggle-maister

Sebastian had today the best ever speech therapy session ever. Again. He has great eye contact, and laughs and giggles a lot from the moment he wakes up. It is unusual and different to what I am used to. I am soaking up every moment of it.

After the session we went to farmers market, and he grabbed an apple and took a bite so quickly I had no chance to react. It is too early for him for raw apples yet. They all coming out of him almost in the same form they are coming in, but I bought half a bushel of Northern Spies. I love that name, and great crispy taste, and how great they come out cooked. We will make some sauce.

Yesterday I was working most of the day and all night, and next week will be very busy. It will be a logistic challenge for me.

Thursday, November 26, 2009

Friendly Universe.

"The most important question a person can ask is, "Is the Universe a friendly place?""
— Albert Einstein


Einstein hypothesized that the answer to this question would determine a person's destiny. I was living in a friendly universe for decades. Lately I have to work on that perception. Some days I have to work on it very hard. Some days I can not keep up.

Wednesday, November 25, 2009

Look what I can do!

Yesterday I was at the Children's College to observe Sebastian in action. He was doing very well. He was putting together four and six piece puzzles, matching the pictures to the objects, and objects to the pictures, picking up dropped objects, putting toys in place, looking through the book, turning the lights off, requesting toys with pecs, going to the toilet and pulling his pants up and down, eating his snack with the spoon, asking for water, taking the dirty fork to the sink. He is able to follow a lot of instructions. He pays attention and responds, and looks to the therapist for feedback. Big stuff.

In the "cabie" next to Sebastian's was a boy about eight years old, and higher functioning than Sebastian, who just started therapy couple of months ago. He was resisting vigorously, and had a really tough time following instructions.

I was thinking "My God! Where Sebastian would be without therapy?" It is even hard to imagine. He would be much worse than any kid I know. I remember when he started at two years old, his first sessions lasted two hours. He would scream full throttle with a high pitched voice non stop for an hour and a half. It sounded as if somebody was trying to peel his skin off. He would stop only from sheer exhaustion. It was very hard to listen to. But I knew nobody was harming him. The therapists were saying "Do this" and asking him to put a block to the bucket.

I could not teach him what he can do now by myself. I am infinitely grateful to all the people who could.

Tuesday, November 24, 2009

Clogs

There are not very many things I can think of that Sebastian learned to do spontaneously. Wearing my slippers or clogs is one of those things. First he was walking with one shoe on, and I did not think it was quite intentional but now he puts two of them on. Sometimes he even manages to put them on the right way and walks through a couple of rooms till he looses them.

... little things ...

Monday, November 23, 2009

At Queen's Park - day 75

The weather was fantastic. I had an interview with a journalist from Ryerson.

No picture today. The battery died in my camera, and my cell phone camera is broken.
Now I can not find my old breaking down Coolpix, so I am not recharging the battery - there are not going to be any pictures tomorrow either. You will have to believe my word that I was there. Bother.

Sunday, November 22, 2009

Half full...

I do not tolerate sleep deprivation like I used to. It takes me couple of days to recover from the times I work the dinner shift at the hotel, come home between two and three in the morning, and sleep about four hours, till Sebastian wakes up. The day after a shift like this goes a little slower than normal. Sebastian roams in his pajamas, we do not go out unless I have to, and I have harder time to think and plan the next thing to do. When I cook I do not keep up with cleaning after myself, the house becomes more messy than it was a day before, and I have a hard time remembering what I have to prepare for the next day. And that is when I work on weekends. When I work on weekdays, I have to drive Sebastian to school the next morning, and it is even harder.

The pay for each function at the hotel is different--the gratuities depend on the price of food and the number of servers. Amount of hours differ too. Mistakes can happen in the accounting department. I was never taking notes and checking my paycheck stubs like other servers did. I finally did today, because a lot of my colleagues mentioned that a lot of mistakes are being made on the payroll. In the two weeks period I worked in this busy time of the year, I covered three dinners and two lunches.I was not payed for both lunches, and for closing two of the dinners. A few hundreds of dollars mistake was made four out of five times, to my detriment.

So the question is, of course, how many similar mistakes have happened over the years? I will never be able to track it. And you know what? I was not even upset much. Lately I am taking such staggering blows from life that that felt hardly like a pinch. I am stressed to the limits, and like with everything that happens in my life I can only blame myself for not checking earlier, for being too trusting and passive, for not being able to concentrate, remember, envision, predict, reason. Anyhow, I am doing all I can, so there is really no point or benefit in involving emotions and getting upset over the matter. But I remember times when I would not remain so stoic.

On the "glass is full" side of life, Sebastian had a wonderful day running around in his flannel green Hulk pajamas. No allergies, no tantrums at all. Lots of smiles, hugs and giggles. Great eye contact, and fantastic looking stool again after a long messy streak. I decided to do the Gaps diet intro again over the holidays. We keep trucking along.

Saturday, November 21, 2009

Giggles

Sebastian woke up today full of giggles.

When he was younger he would often wake up crying. And he would keep crying as I was dressing him up and putting him in the car. And he would cry most of the time we were driving on QEW - the busiest stretch of highway in North America. Many many screaming minutes, hours days. He would get quiet when the car was moving fast, and start screaming again when we were stuck in stop and go traffic jam.

To have him giggle and give hugs from the moment he opens his eyes is most delightful. I hope I will have a chance to get used to that.

Friday, November 20, 2009

Ombudsman, ombudsman...

Here is the answer of ombudsman to concerned parent complaint about PPM survey.

Click on the image to enlarge.

I will not comment other than Shreck is on TV right now. That animation seems to me less surreal to me at the moment.

Wednesday, November 18, 2009

At Queen's Park - day 74



Good weather for window washing at Queen's Park.
My cell phone camera broke down and this is last sharp picture I made with it.

Tuesday, November 17, 2009

At Queen's Park - day 73



The weather was so gorgeous, it was impossible to be in a bad mood today. Brian Coldin was there, with his mother this time. She is a delightful lady. We had wonderful chat, and time passed quickly.

I had to leave early to go to Children's College for a monthly meeting about Sebastian's progress, and that was very encouraging. He is still making progress in spite of reduced hours. He is focused and matching his pictures to objects with ease. What is more important, he smiles and is looking at the therapist's face for feedback. That is an accomplishment not to be taken for granted!

Hearing this makes me think that it is worth the effort to help him, because he is putting so much effort into doing his part very well.

Monday, November 16, 2009

At Queen's Park - day 72


The November weather has been so kind this year that coming out is just a pleasure. I spent a long time talking to two workers, one originally from Jamaica, the other one from Trinidad. That was a lot of fun.

Sunday, November 15, 2009

Eye contact

Sebastian looks at me when he requests something, or wants to know what I am saying. That bold and spontaneous eye contact startles me. I am used to non-existent, or only when prompted glimpses that last only a split second. I am used to him using his peripheral vision a lot. When he looks at me and smiles, I am surprised. But it happens lately quite often, and I am grateful.

Saturday, November 14, 2009

Ombudsman Update

I received that email from long time autism advocate and parent of autistic child Taline.

"Dysfunctional systems are often maintained through systematic denial, failure or inability to see the reality of a situation. This denial need not be conscious, intentional or malicious; it only needs to be pervasive to be effective."
Warren

I spoke with the investigator at the ombudsman's office this afternoon. Their response to my concerns regarding the ministry's monitoring of PPM 140, the ministry's responsibility in the provision of IBI and education together through existing opportunities (eg: Provincial Demonstration Schools, Alternative Schools, Section 23 Programs and PPM 81) and the inconsistency between schools in accepting children with autism to attend public school programs with direct support of IBI/ABA instructor therapists (both in regular classrooms and separate classrooms), is nothing short of a complete disappointment. I have asked that they send me their response summarized in a letter and I hope to receive it soon. In the meantime, this is the information they shared with me:

1) Re: the monitoring of PPM 140 (ABA in the schools) - The ministry will not be soliciting feedback from families but rather only from the boards. The boards are welcome to take parent feedback but this won't be mandatory. The ministry will only be analyzing feedback from the boards. I doubt that detailed data will be part of the feedback. The ombudsman's office will continue to monitor the ministry's monitoring of PPM 140 but feel that the concerns at this time are to do with training and educating staff and that this is a budgetary issue which their office can't interfere with. It's not impossible to foresee that the ministry will at some point rely on the "limited resources" argument when cornered on the lack of appropriate ABA training in the schools. Autism Ontario was consulting at some level to a new survey the ministry was preparing for parents to complete but I have not heard anything more about this.

2) Re: the IBI/ABA instructor therapists allowed in some schools and not others - I was told to ask for clarification of the "space" wording from the ministry myself. The ombudsman's office did not seem troubled by the fact that the school board thinks they are fulfilling their obligation to educate my son and others by sending them to the local library or community centre.

3) Re: my question about the ministry's ability to deliver education and IBI together through existing systems (eg: Provincial Demonstration Schools, etc.) - No response on this. I assume they can't do anything about this either.

I can say with full confidence that the ombudsman chapter is now officially closed in the Ontario Autism Crisis trilogy.

Taline

Friday, November 13, 2009

Another school transition meeting

We had another meeting arranged by Dr. Reitzel with the participation of school representatives and so-called transition coordinators. I have learned that I can be assisted by them. How? They will meet me and discuss challenges I am encountering regarding Sebastian and then they will consult me, and give some advise - since they are government hired experts who know how to tackle challenges arising when upbringing autistic children. I wonder if the government has similar services for, say, homeless people. Homeless people could use some advice from people who have never lived on the street, and hope they will never get there thanks to the government job they have, who are not board-certified psychologists, but who are really good at giving advice for people. They have been doing it all their life. Homeless people's problem is the lack of a roof above their head, so will they benefit from limited time offer, tax payers funded advice from an expert. NO? Our problem is that the therapy Sebastian's so desperately needs is being taken away from him, but I (the mother of the child) can use some advice - think how good it will look on the reports! It will be called support given to a parent, and successful transition of the child to a school system.

A Children's College representative was present there too, and her dialog and exchange of information with the school staff was very positive and useful. The ladies from St Brigid's School are fantastic. They are going above and beyond their call of duty, I am very thankful and admire them for it.

Thursday, November 12, 2009

Dry Nose

Sound and smell of Sebastian breath is the sweetest and most calming sensations for me right now. After years of chronic running nose and congestion, and the breath that smelled like a dead mouse, he breaths rhythmically and at ease when he sleeps now and his breath is sweat and fragrant most of the time. I think now his congestion was caused by allergies, but I did not realized it for years. It started when he was three and started attending kindergarden, and I was told by everybody that kids go through series of colds before they get immune to bugs circling around. Sebastian's running nose lasted for weeks, than months, than years, we got used to the way it was. Finally I realized it is not "normal", but really I did not know what to do about it. Surprisingly we got a brake after alternative allergy treatment more than a year ago. Now wet yucky nose comes back sometimes, but is not a constant companion. Dry nose is something to celebrate in our family.

Wednesday, November 11, 2009

Day without a tantrum

Yesterday we had a day without a tantrum. We spend a lot of time hugging and wrestling, singing jumping on the bed and looking at the books. Sebastian is such a joy and delight when he feels well.

I was hoping for another day like that but soon after he came home he started crying. And fifteen minutes later he was crying louder and his eyes were pink and starting to swell. I gave him antihistamine and twenty minutes later he calmed down. He had another tantrum few hours later, and he calmed down watching Blue's Clues. So how comes that one day he is fine, and has an allergy reaction the next, and than another tantrum, can only suspect but do not really understand the reason? I wish I new more, and felt more in control.

I was working lunch serving two hundred bankers who bragged how many hundreds of millions they have made.

At the Queen's Park Celebrations went on without me.

Tuesday, November 10, 2009

At Queen's Park - day 71


Today I was happy to see Muskoka worrier for justice Brian Coldin. He came with his friend to help him erect his tall and heavy cross shaped sign.



Chinese tourists listened to explanations of what his protest was was about, with help of their translator.



The George Brown statue was getting cleaned up for tomorrow's Remembrance Day celebrations. A lot of VIPs will attend. I know about it because I had a phone call from Queen's Park Security around 5PM today letting me know in a very polite way that there will be no room for me on Queen's Park lawn before 1PM tomorrow. I promised to cooperate and stay where the general public is allowed, on north side of the park. I really do not want to cause any unpleasantness for the VIPs that the front of the Queen's Park is reserved for. They waited all year to put on red poppies and celebrate their Remembrance Day in peace, and not be distracted by a middle aged woman (is she quite sane?) with a pathetic sign over her head demanding therapy for her autistic child.

I was going to go and watch from afar, but I was called to come to work the lunch shift at the hotel around 8PM. Lucky VIPs. They were in danger of having a glimpse of me, and then they would have to pretend they do not see me. How awkward.

Monday, November 9, 2009

At Queen's Park - day 70


The weather is very beautiful these days. I am sitting here, comfortable warm in the sun watching workers do their thing. But inside I am anxious, my mind is racing and I can not stop it.

I am in a very peculiar position to observe my own cognitive powers fluctuate. There are days when I can write and have fun with words even, and there are days when every sentence is born in pain. Today is one of those days.

We are down one more old tree in Queen's Park. Another tree was cut down near the war memorial.

Stay sane.

Last night Sebastian woken up in the middle of the night, and came to find me. I lay down beside him. He was whining a bit. I could hear his stomach grumbling. He must have been woken up by his belly hurting. He had diarrhea last night. I can only suspect what the reason was, but I do not know for sure.

Yesterday he was stiming all day very intensely, and he had one of his mysterious allergy attacks. I was burning twigs in the yard in a little barbecue. He was watching it and tuning around to warm himself from all sides. Maybe it was the smoke that caused the attack.

After I put away the down duvet and washed all the sheets he fell asleep peacefully, and considerably early.

I think he acts up initially because of his discomfort, and yet after few of those episodes, he begins to act up from other reasons.

People in crisis do not think about the future, but live day to day. I have lived like that for years now--except on the days when I live hour by hour. Very often, a few times a day, I live minute to minute. My immediate goals become surviving another tantrum, keeping Sebastian safe, keeping everybody else around him safe, finding a solution, finding the way, staying calm, patient and staying sane.

Sunday, November 8, 2009

One step forward...

Yesterday we went to speech therapy around noon. The therapist said that Sebastian had the best session so far. His eye contact has been improving lately, and he is more attentive to his environment.

That night I went to work. Everything was fine when I called around seven, but when I finally came home around 3 am my babysitter said that at ten o'clock Sebastian had had the worst tantrum ever, was crying and grabbing her hair.

Sebastian's stool has undigested food on it again and it looks only a little better than before GAPS diet.

Why does it always seem to be the case with me: whenever we seem to be making a step forward, it's followed by a step or two back?

Saturday, November 7, 2009

Nightmare

I struggle even in my sleep. Last night I in my dream I was climbing three steep hills with observation towers on top of each one, and I fell off last wobbly and flimsy tower. After that I was stuck in very small and claustrophobic shelter with my father and my brother, and I wanted to get out really badly.

When I sleep and in my waking hours and I am not doing well enough. I would like to change that. I need a little rest.

Thursday, November 5, 2009

School transition meeting.

I had this morning Sebastian's transition school meeting. In spite of the fact that transition coordinator from Chedoke did not show up, the meeting went very well. School staff from principal and coordinators, to teaching assistant and lunch lady are doing everything they can to accommodate Sebastian. And it is not an easy task. They are getting to know him to be able to predict and deal with his violent outbursts with scratching and biting and hair grabbing. He has entire classroom where he has his table, pecks, puzzles, a lot of great new toys, books, and a even a little TV. Sebastian's teaching assistant has an experience with working with autistic children, and they already have a connection. Sebastian is definitely happy there. School is doing everything they can, it is encouraging and I am very thankful for it.

My concern is how Sebastian will do in less structured environment for a longer run, and if he will be able to learn as much as he can with IBI, and how it will affect his future.

Royal visit

Before arrival.


Here they go.


Wind and rain started soon after royals came.


Fly over.


I came too late to be allowed inside.


But I saw departure from up close, and that was when my camera died.


Haida is just a walk away from my home, and thanks to the fact that I was wearing my overhead sign I have met one more parent of autistic child from my neighborhood.

Wednesday, November 4, 2009

Biting a stranger.

We came to this building first time couple of weeks ago. It is old solid factory building converted to offices. We climbed to the fourth floor since Sebastian s afraid of elevators. On the fourth floor the door from the staircase lead to long, bright carpeted L shaped corridor that runs through entire length and width of the building Sebastian was happy to run back and forth, and I felt since it was an enclosed space he was safe there. 'When we the time of our appointment came I was filling up the form Sebastian run outside of the office to the corridor again. I went out to get him, and saw that he took his pants off. It could indicate one only thing. When I get to him with the key to the toilet, he was more than half way done. Embarrassing. But we live in a zone where embarrassment must be ignored in order for our life to go on.

Today we were there again. I got the key to the bathroom right away, Sebastian used the toilet and things went smoothly before the appointment. Session was very stressful for Sebastian since it required him keeping still, and that id hard for him to do. When I was making another appointment Sebastian run out to the corridor. Since corridor was enclosed I thought he would be safe there for the minute I needed to finish. I was wrong. Very soon we were alarmed that Sebastian entered through the open door to another office, and bit somebody. Sebastian does not attack strangers, and tries to avoid contact with people if he can, but there were two occasions when he pulled a stranger hair. An yet this time I somehow new that something bad has happened. I was shocked, and all what I wanted to do is go home as quickly as we could. As a result I dad not apologize to satisfaction of the lady who was injured, and I had an email from her waiting for me at home that demanded satisfactory apology to be made and as made me relive and entire experience. I apologize.

The lady he did it to is an adult, but if Sebastian encountered a child the consequences could be much more traumatic. Sebastian is just six years old today, but if his behaviour will not improve dramatically it will soon be impossible for us two to go out together.

Will I ever hear an apology from people responsible for taking Sebastian's therapy away from him? I wander.

At Queen's Park - day 69



There is a lot of work going on.




I was happy to see Edward today with his new and improved sign.

Tuesday, November 3, 2009

At Queen's Park - day 68

Today, the Truck Training Schools Association of Ontario was, together with truck drivers that need to be tested, protesting the suspension of truck driving road tests. Testing was stopped because the government employed road testers are on strike.











Good luck truckers!

Sunday, November 1, 2009

Macaroni and cheese envy

We did not go to the farmer's market on Saturday. Last Saturday I bought apples and grapes. Sebastian craved and ate a lot of them, but they were coming out of him undigested. I did not want to wrestle with him, taking away from his hands apples he had already helped himself to and even bitten into. I took the easier way out and stayed home, since we had plenty of vegetables. But I did run out of onions, and we went to get some at our supermarket.

My shopping is easy now. I only visit the fruit and vegetables section followed by eggs and butter. All bagged, boxed and sealed-in-colorful-packaging goods are not for us. But when I was passing through the rest of the store I noticed the stack of boxes of macaroni and cheese, two for 99¢, and I thought: I do envy parents of healthy children that can feed their kids whatever they want. Wouldn't it be easy and just wonderful to get few boxes of that and cook it and serve, and just not worry about gluten allergies, "leaky guy syndrome", undigested food in stool, GAPS diet, or anything else?