Sunday, January 31, 2010

Sunday, Sunday...

As usual Sunday after night I work is not very productive or exiting day - we just rest. We went to the Sears trying to buy waterproof bed cover because Sebastian had an accident last night. He needs to e reminded to go to the bathroom before he goes to bed, and when that doesn't happen, results depend on amount of how much he has been drinking before going to bed. They did not have a sturdy cover I imagined that would have. They had something vinyl that did not have any fibers embedded in it and it would rip in no time, so spending $13 dollars on it would be like throwing away $15 (taxes included) we do not have.

It is not easy to go with him to the store now, because he does not react to 'Stop", tries to run away at every possibility, rolls on the floor, touches and knocks out everything within a reach. When we go to grocery store I put him inside the cart and things are easier that way. He is getting bigger every day and they do not make oversized carts for boys who can not behave in the store. And also he is reaching to other peoples carts and picks up "preferred items" that way. He is fast at it too. We will have to work at it, and go to stores more often again.

Saturday, January 30, 2010

Busy Saturday

I was working today and I am either too busy or too scattered to catch up with myself. But I have to tell the world: I really like the people I am working with - so many gentle, good hearted souls in one small place must be a rare occurrence - I am very lucky to find it.

I have a lot to write about.

When I was standing protesting in front of the Queen's Park building, I often felt that I was having little to no impact on the situation. I was thinking that I would achieve more taking legal path.

Now the Ontario courts have decided it is OK to discharge Delanie Cetetti from IBI therapy because all the bureaucratic procedures were followed to the T. Wouldn't you like to meet those people and congratulate them? There is no real need: I suspect they congratulate themselves a lot, because they look very satisfied with themselves. That is my impression. I had the pleasure to meet half of the army of them during Sebastians' discharge. Well, I did not congratulate anybody yet. But I made it clear what I think about them without using any swearwords. It takes a considerable, and in my opinion admirable, amount of self-restrain.

I will write now how my OHRC proceedings are going, and it promises to be an interesting ride, although I really do not have much confidence in the process. I will explain why in my next post.

Wednesday, January 27, 2010

Szatmari appointment

We had appointment yesterday with doctor Szatmari. I am not sure of the hierarchy in their organization but to my understanding he is a boss of the discharge papers signer doctor Jo-Ann Reitzel.

I do not think it a coincidence that doctor Reitzel received $150 000 to conduct the study three years ago:
A research study that may provide hope of finding an effective, alternative intervention for children with autism who do not respond to Intensive Behavioural Intervention (IBI), is being conducted under the leadership of McMaster University.

The true motive behind that study seems to be providing justification for the discharge of low functioning autistic children from therapy-- the dirty work of moping up and masking government inefficiency in providing life-changing treatment to one of the most vulnerable groups of children imaginable.

Talking to those highly trained, highly educated and aware professionals who deal with me - a nuisance in their otherwise comfortable professional lives - with polite, very insincere looking smiles, is a mind boggling experience for me. Because they know. They are very well aware of consequences of their actions. And they actively participate in supporting a system that fails thousands of vulnerable children. Denying known and available treatment ruins the lives of the children and their families, and is such a waste of human potential. A generation lost. And they know.

Why are they doing it?
I think making a comfortable living, gaining prestige, a pension comes from supporting whatever policy their employer (the government) expects of them. And they do their jobs well. Hundreds of children discharged. Thousand on waiting lists. Thousands off waiting lists. And in spite of it all, beautiful reports. Fantastic looking on paper polices. Everything supported by studies. Reports with signatures of people with degrees and scientific titles.
And who will prove them wrong? Low functioning autistic kids?

And yet I know from my direct experience that political winds change directions. Entire climates change. I grew up in communist country that is not communist any longer. I grew up in a country that was once under Nazi occupation. It was absolutely acceptable for them just to kill the mentally deficient. They also had avery efficient system, supported by scientists who were helping to justify improving their race by eliminating the inferior. The mentally deficient were the very first victims of the regime. In our society we do not kill. We let die. And autistic kids without treatment do not even die. They just fail to thrive. They die when they are older, and then their deaths are called unfortunate accidents.

I have a dream that one day I will live in the place where scientifically proven treatments will not be denied to a child because his IQ score is less than certain number, less than 35 - for example.

Tuesday, January 26, 2010

Waa waa

Yesterday Sebastian was in a great mood. He was laughing, giggling and babbling. I encourage him to vocalize "I want" when he wants something - he says "Ah waa" , but yesterday he was asking for banana and was consistently saying two more syllabus, and it sounded like: "Ah waa waawaa" - that is much closer to "I want banana".

He often does something amazing couple of times, and then never ever does it again, but I hope that he will stick to it.

I have not got to know his personality well since he is often quiet and silent in between his meltdowns, just giving out a bright smile from time to time. Now there are moments when I can see a subtle and whimsical boy emerging. He very much enjoys and is amused by the world he lives in. I can see it in the way he looks and reacts to his surroundings. I can not really pinpoint it, I experience it more as a feeling. He comes and gives hugs, presses his face against mine. He comes to the kitchen, busy stimming, but when I join him on the floor he welcomes me with a smile. It is hard to engage him, because he will not spontaneously take turns or imitate in any way, and yet I know that somehow he is registering what is happening around him, and taking it all in.

Sunday, January 24, 2010

Tagging along weekend

Yesterday Sebastian had earache, and I did not even realize it. But I went to work and Irene who babysits him did figured it out. She gave him some children's painkiller and ear drops and he got better. I came home around three in the morning and Sebastian woke up full of giggles around four. He is very delightful when he does that. Little miracle. I was very tired and grateful when he did fall back to sleep. We woke up around eleven and got up near noon. So much for consistency in our routines!

Sebastian seems to be quite fine today, but I have a headache, chills, and just tag along. I was watching a TV show called "Mystery Diagnosis" where almost in all episodes headaches were a symptoms of very serious medical problems. I hope I will feel better tomorrow.

Friday, January 22, 2010

The Hamilton Spectator article about Delanie discharge

Autism treatment ruling devastates Hamilton dad


The Hamilton Spectator

(Jan 22, 2010)

A Hamilton father who fought for equal treatment for both his autistic daughters and lost says he is devastated and has nowhere left to turn.

Paul Ceretti learned earlier this month that the Superior Court of Justice upheld a decision by the local autism program to discharge one of his seven-year-old twin daughters from a specialized therapy program.

Ceretti's daughters Delanie and Mackenzie have been in the intensive behavioural intervention program in Hamilton since March 2007, when they were four.

Ceretti said Delanie was thriving on the program. However, an independent reviewer concluded she should be discharged because she wasn't showing "meaningful improvement."

Ceretti took the case to court but the court ruled the program followed proper procedure in the assessment and that the decision to discharge Delanie was reasonable.

Ceretti said he is now living a parent's nightmare -- watching one daughter progress while the other falls behind.

"Mackenzie will still receive it and because it's in-house, we have to sit and watch as one daughter gets help and the other sits there and does nothing," Ceretti said.

He was told there are school-based programs available for Delanie.

"I went to the school and they couldn't guarantee she would even have a full-time EA (educational assistant)," he said.

"Delanie isn't just falling through the cracks, they're pushing her through it."

Parents with autistic children say the court's decision was a "devastating blow" for all families.

"I am sad for Paul and sad for the implications this has on the autism community at large," said Laura Kirby-McIntosh, co-founder of the Ontario Autism Coalition.

Provincewide, there are more than 1,500 children on wait lists for intensive behavioural intervention therapy, a highly specialized treatment that, if funded privately, costs $70,000 a year.

At the Hamilton-Niagara Regional Autism Intervention Program, there are 140 children on the list who can wait two years, said Kathy Pierce, clinical leader with the program.

Pierce said the program developed standards of practice three years ago as a way to measure a child's progress.

"We wanted to make sure children were benefiting," she said.

Pierce said a clinical panel was set up by the Ministry of Children and Youth Services to establish benchmarks for programs. That work is done but has not yet been implemented.

Paris Meilleur, spokesperson for the minister, said the government is conducting an "internal review" of the benchmarks before they are implemented.

Parents, including Kirby-McIntosh and Ceretti, allege those benchmarks are simply a way to push children off long wait lists.

"You can't use one standardized test for all these children because their range is so different," Ceretti said.

ddavy@thespec.com

905-526-3317

Thursday, January 21, 2010

My current ball



Well I am not so happy with my ball so much recently?

I do not believe in many things, but I am quite sure that individuals are at least partially responsible for their circumstances. So I am responsible to certain degree for the predicament I am in, and my son, and his future. But again to what degree?

I do not watch news this days. Just thinking about what is happening in Haiti upsets me. The situation there is only getting worse, and the unnecessary suffering of innocent people multiplies. I feel like all I can offer are very un-perfected and rushed moments of prayer. My prayer is not perfect, because my faith and understanding of world around me is faulty at best. It is hard to understand why so much suffering is happening on one small island of a planet. My friend said to me today that one could now ask a very cynical question: "Is Good sleeping, or did Haitians deserve it?" Only sick minded people would believe that the long suffering Haitians had anything to do with the earthquake.

My question is: to what degree are individuals responsible for their own circumstances?

Tuesday, January 19, 2010

Brave face

I have no brave face to put on today.


Sebastian was throwing up last night in spite of the fact that he did not eat anything, just drunk some soup and water. Today he was stiming like mad in the morning, and now he is just crying. He is clearly in pain.


I would like to crawl in some crevasse, curl up in the ball and disappear.


I have no hope OHRC will help us. They already have ruled against extending Sebastian temporarily for the time of preceding. Dr Jo-Ann Reitzel the proud discharge papers signer must be very happy. She and others like her fill much more confident signing more discharges. Now they will not wait 12 or 18 months. They can do it much more efficiently just after 6 months! That will make ministry much more efficient, because they will reduce the waiting list by 25% from 4 to 3 years. Progress in developed country. Admirable!


I do not even know if I will be able to, and if it is worth energy and time to go through the motions of OHRC process. I need a lawyer - free, and now, I have 10 days to get ready, and than two months waiting for the verdict.


I do not believe really and it is difficult to me to even comprehend what am I going through.

Some days it is very difficult to remember that the universe we live in is a friendly place.


Monday, January 18, 2010

Delanie Court ruling.

I am posting the court ruling against Delanie Ceretti with permission of her father Paul.
I can not describe my fillings when I try to read it. I have not read all 10 pages. just can not get through it.

So here is the ruling. Read carefully. Do it for me.

After I have read it, and after I have heard how Ontario Human Rights Commission mediator reacted to the news tat that decision , and after how he ruled against extending Sebastian's therapy temporarily for the time of proceedings - I have no hope we will be heard. I would need a "Dream Team" of very crafty and experienced law mavericks. I was very naive thinking that it would be enough just to explain myself.

The situation is simple to me. Sebastian is low functioning autistic child. Very delayed child. He was waiting for two years for therapy funding.In 18 nmonths of therapy he made amazing progress (89%) after long time of regression and stagnation. He has long way to go but he can go far with help. Nobody is able to predict how far he can get. There is no way to prove how he will develop. Some low functioning individuals make amazing leaps, some high functioning individuals regress. He is severely autistic, and he can not learn like other kids: by imitation and from their environment. His education and progress will stop and he is in danger of regression if therapy stops.

With his markers, functioning as low as he did he had no chance from the onset to meet the Continuation Criteria according to which he was discharged. Only small percentage of highre functioning kids do. And those that do are likely to be discharged because they are not autistic enough already and ready to join main stream education. So Sebastian was discharged because he PROGRESSED slowly. He progressed slowly because severe autism caused his developmental delay.

He was discharged because he was developmentally delayed.
Resources are available if the administration was be able to redirect the tens of thousands of dollars school board receives to accommodate handicapped student - to his therapy.

He has no chance without therapy to achieve his full potential. That is a nature of his disability.

And what is beside the point here but truth - the social cost of treating children like Sebastian like he is teated is devastating for thousands of individuals who are directly effected by the disease, for their immediate and extended families, and is also great loss of beautiful minds that could contribute if given a chance to out future society.

I would like people who work behind the desks payed by taxpayers money hear me. So far nobody has been listening.

I need some cheering up. I will watch this again.

Sebastian is throwing up. May be it is just a flu.

Sunday, January 17, 2010

At Queen's Park - day 81



We went to Queen's Park today. We have found it crowded with hundreds of Iranians protesting against human rights violations.



Music was a bit to loud for Sebastian, but he dealt with it well.


Human rights are being violated all over the world. In some countries more overtly that in others.



Sebastian rolled in muddy grass, and got his two jackets dirty in only 5 minutes.


Saturday, January 16, 2010

NAS launches 'We Exist' campaign for a Scottish Autism Bill

My Scottish friend send me link to this article. It looks like Scots are ahead of us.

But they were going through similar to ours difficulties.
Here is quote of an autistic man from the report:
"I remember how my parents fought desperately to ensure that my local education authority gave me an education to meet my needs... Every time a person with autism misses services that other people with autism have received due to a postcode lottery, Scotland potentially loses another individual who could have contributed to Scottish society.”
James Cusack


Friday, January 15, 2010

Human Rights Commission Interim remedy conference call.

It did not went well. I was asking for temporary extension of Sebastian's therapy till we are heard. I was outnumbered, outwitted, and they mentioned recently lost Delanie's case that is very similar to ours. I have very uneasy feeling.

How can I be so sure that I am doing what is right, and meet on my way educated, intelligent, well meaning ( I have to assume so, nobody is real evil) that question and fight me nail and tooth? In the process they attempt to trample the future of very sick boy that happened to be my son. Everybody on the other side of the line was doing their job, and was payed by taxpayers money probable all together more for that hour of work than I am making in a month. They were in their offices. I was at home in my messy kitchen watching Sebastian running with his bare unwiped bottom because he decided to go to the bathroom while I was on the phone.

Let's just have hope. Even quivering hope is better than no hope.

Thursday, January 14, 2010

Human Rights and equal fighting chance for the most innocent and most vulnerable of Canadians - truth or fiction?

We will soon know the answer.

By the grace of Good, and help of good people, I was able to apply a file complain to Human Rights Commission about Sebastian;s discharge. Future of my child is in my hands and those who will make decisions. It depends on what I will do or not do, what I say, what my faulty brain will choose to remember, or forget. Good have mercy. Pray for me who can.

Humanity is tested in Ontario.


I have no lawyer - I was refused the free one , I can not afford legal helpers rates. Dr Reitzel (the discharge papers signer has one payed by tax payers (your) money. The lawyer will speak for her during telephone conference call we will have tomorrow at three that will decide if Sebastian's therapy will be temporarily extended for the time of proceedings. I am on my own! I fill like the underdog of the day! I will let you know how things went.


I was serious about those prayers.

Wednesday, January 13, 2010

Extended belly and messy stinky poo

Those pictures were made couple of years ago. I found them when I was sorting contents of an old box. It brought wave of memories. Not good ones.


I made those pictures to show them to my doctor. She send me to prestigious gastrologist doctor from Mac-Master Hospital. We were waiting six moths for the appointment. I had high hopes. I was certain that that doctor will help us. He did not look at the pictures. His assistant did. He said that he had much worse cases everyday (I was wasting his precious time) It was a scene. I could not help myself and bursted into tears. I new that something was terribly wrong with my child. I new that his mucusy stools were not normal, his extended belly was not normal, undigested stinky messy poop for years - not normal. My heart would break every day when I was looking at it. I was reaching for help. I was send home. In tears.

My friend and neighbor, mother of three came to the rescue. - Are you giving him juice? Stop. - she said. I did and mucus mostly went away. But undigested food and stench stayed. It took two more long years for another mother to tell me about GAPS. I really did not want to try another diet, but something made me do it anyways. I would like to say that the rest is history. Well it is not quite so, and pretty, shapely, fragrant stools come and go, and come again. But good mood has been with us for weeks now, most tantrums went away, stiming goes up and down, but sometimes it goes down so much, that it disappears. A miracle.

So if your child:
is growing slowly,
he or she is just, skin and bones,
has extended belly,
has eczema,
has a lot of allergies,
cries a lot,
stims,
mouths almost everything, no - EVERYTHING!
is tense, and wired,
does not sleep well, sometimes it seems not to sleep at all,
wakes up in the middle of the night crying,
is cranky and fussy eater,
likes only very few foods,
has messy or very light in color stools,
do NOT believe anybody, doctor or no doctor, if they say that is is "normal", that your child just is like that, that it is his idiosyncrasy and he certainly will grow out of it.

Try GAPS. It just might help. Yahoo has a support group called GAPShelp. One needs a lot of help and reading in the beginning. One needs to unlearn a lot too. It is not going to be easy, but it is feasible even for easily distracted people like me. Your child will get better. But your pots and pans will get greasy. I promise.


Tuesday, January 12, 2010

Tough day

Yesterday we had bad news about Delanie. I got upset about it, and it took me some time to calm myself down.

Today huge unexpected bill hit me and I did not see it coming. What is up with that? Small bottle of Polish herb vodka left behind by Basia, my friend who visited in the summer came handy today.

We had such a great rest during holiday break, first time in years., and now stress is mounting again. I need to come up with strategies more reliable than hearty drink. Breathing exercises, meditation, jogging, rope jumping.... But whom am I kidding? Instead I stuff myself silly with anything I can find around the house, play solitaire, and watch irritating fake crime show on TV. Because I can not concentrate enough to do anything else. My mind is racing like panicked and mad monkey. And I just sit there and procrastinate everything that there is to procrastinate. Result? Messy house and more stress.

In short future I have coming important and stressful meetings, health scare to be identified as such, and rest of it all to figure out. And there is a lot to figure out.
I would like to live through the time when everything is falling in place, but today I do my best just to not fall apart.

Monday, January 11, 2010

Court decision about Delanie...

I do not know what to say or do. I have received Facebook message from Delanie's father anouncing to everyone that:

the courts have deiced that Delanie is not worth it and have upheld the region`s decision to stop her funding...


Discriminating, shortsighted, ignorant, heartless, courts...
Who are the courts? Who are the people? Who makes the SYSTEM run? How are the most vulnerable treated?
Who is Canada?

Sunday, January 10, 2010

At Queen's Park - day 80

I was able to visit Queen's Park before I rushed to work on Saturday. It was cold! I was able to catch last minutes of sun. After that it was just freezing and gloomy.


Saturday, January 9, 2010

Best ever...

Sebastian just had another "best ever" speech therapy session. I know that he is recently improving a lot but having it confirmed from all directions is reassuring. He had great eye contact, was trying new sounds, and what is most amasing, did not stim by chewing on things. OK, may be I am boring but I thing that his healing has a lot to do wit GAPS diet. Believe you me! And if you don't I am fine with it too.


Now i have to get him and his food ready because I am working tonight. Busy, busy, run, run...

Friday, January 8, 2010

26 hour day


Sebastian's biological clock thinks that a day is not 24 hours long, but 26 or so. He falls asleep at least one hour later than he did day before, and sleeps up at least two hours pass the time than he got up day before. Unless I wake him up of course. Unless I peel him off bed half conscious and warm.


At night after I turn off all the lights, and lay in bed beside him, if I do not do that, he will look for me take me by hand and bring me to bed. And so, we lay down in the dark, he still gets up and runs to his playroom, comes back, jumps up on the bed giggles, that is followed be tossing and turning, for about an hour. but when he finally falls asleep, he sleeps deeply for at least ten hours if I et him. And I do not like waking him in the morning - I think he grows and heals when sleeping so well. But if I do that, next night we will have very difficult time to put him to bed.


I must say that it is rather tiring for me. Yet it is entire universe away from waking up just after three hours of sleep, and staying up rest of the night that was much more common just few months ago.

Wednesday, January 6, 2010

Carly Fleischmann on 20/20

Carly gives me more inspiration than any other person on earth. I do not think I posted that video before, so I am doing it now.

Tuesday, January 5, 2010

Bleeding gums

My gums bled since I remember. In primary school when we were instructed how to brush our teeth my toothbrush was more pink than other kids toothbrushes. Our school had a complete dentist office with chair and equipment where dentist would come once or twice every week and every student would be checked up at least once a semester and had their fillings done for free.


Since then, over the years I was being put to shame many times during teeth cleaning sessions by spiffy dentist assistants that were telling me that my gums bleed because I my dental hygiene sucks. I have seen plenty of dentists, oral surgeons and orthodontist since I had my braces in my thirties. They were diligent about s scheduling next cleaning appointment. During each teeth cleaning session between almost condescending remarks about state of my gums I was always advised to brush often and floss a lot so that my gums "get used to brushing", "hardened" and would not bleed anymore. That would never happen.


My gums were always always sensitive, hurt plenty and would always swell after brushing unless I rinsed or even brushed second time with Listerine. I had to use Listerine a lot. No other mouth wash would be strong enough. I thought that that is how my gums were, and learned to live with it. Couple of years ago my friend mentioned and recommended Waterpik, oral water jet cleaning device, but I have never heard about it before, and never have seen one.


Lately my gums started to recede. No wander, over 30 years of gingivitis would do that to any gum line. It is kind of scary though. So when I noticed at Costco Waterpik Dental Water Jet I picked it up.


Since gingivitis bacteria thrives without oxygen, I added a tablespoon of peroxide to my water. My gums bled and I felt prickly sensation very first day I used the jet, but on the day THREE my gums stopped hurting and stopped bleeding and hasn't been bleeding since when brushed. First time in my life. A miracle! My mouth feels fresh and cleaner than any flossing would ever achieve.


I am posting this because although I do not like electric gadgets in general, this one I wish I had been using for a long time since eliminating inflammation sources is important to overall health. And overall health is important to over all well-being. And overall well-being is essential to creating happiness and peace. And that is what we are all after. Peace and happiness for everyone :-)


Monday, January 4, 2010

The Guest House

Rumi, born in 1207 in Persia, poet, theologian and sufi mystic was writing in Presian. He has been described as the "most popular poet in America" in 2007. I stumbled upon his name like I usually do, listening to the radio, or checking something on the web. I feel compelled to share one of his poems.

THE GUEST HOUSE

This being human is a guest house.

Every morning a new arrival.

A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.

Welcome and entertain them all!
Even if they are a crowd of sorrows,
who violently sweep your house
empty of its furniture,

still, treat each guest honorably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice.

meet them at the door laughing and invite them in.

Be grateful for whatever comes.

because each has been sent
as a guide from beyond.

-- Jelaluddin Rumi,
 translation by Coleman Barks

Sunday, January 3, 2010

Hugs

Second week of holiday break this year was time of real rest for me. I was planning on making another GAPS diet intro, but I did not get quite there. Sebastian was in impressively good disposition, and I felt much better almost all week. We slept well and I am relaxing a bit. I guess that is what people call normal life, but for us it is exceptionally good times.

Last year was very stressful for us, but it was better than year previous, and that was (unbelievably) better than a year before that. Things are getting better!


Simon made those pictures when he was over yesterday. We payed him a visit too, and we had a delicious dinner his temporary roommate and contractor made. Sebastian came with no prompting and sit with us by the dinner table on the chair. I am a very proud mama.

Saturday, January 2, 2010

Pictures from New Year Eve

Simon send us pictures he made on his cell phone on Thursday. I think they are good. Thank you Simon!



Sebastian enjoyed the big city lights.






Friday, January 1, 2010

Good times at home

We had another good day at home. Sebastian is in a great mood, has a lot of giggle fits, looks for attention, and is very agreeable. He looks at me, and his face expression changes, he raises his eyebrows, like if he thought about something new, wanted to say something. I cherish every one of those times. Those little moments are new, unexpected delicate and fleeting, but every of them is delightful.

Almost everything is a good reason for giggles for him even wiping buggers from his nose. He giggles a lot before he is ready to go to bed. He sleeps 9 to 10 hours a day with no pharmacological help now. It Is hard to fall asleep for him, and so every day if I let him sleep longer in the morning, he falls asleep later - he has it after me.



For somebody else my life would be very boring, but for me the fact that we can catch full night sleep is refreshing and exiting and not to be taken for granted. I can only hope we will have plenty of nights like that in this coming up decade.

At Queen's Park - day 79



Today was the last day of the year. We celebrated by going to Queen's Park. It took us very long just to get out of the house, but we finally have made it. We went to look at the lights to Dundas Square. Sebastian was very good. He enjoyed the trip




Sebastian is visibly outgrowing his stroller.