Health records reading.

I was reading through Sebastian's health records that submitted for OHRC hearing by regional autism center. There is a lot notes there about my mental state, being stressed, my appearance etc. Those do not even have place in my sons health records. And their lawyer is bringing them all out. I have to prepare for character assassination. Old blame the victim tricks.

They are probably going as far as to question my abilities as a parent. Difficult to believe but truth. It is very surreal. I need outstanding lawyer. Yesterday.

New - old camera

I have lost my old Nikon Coolpix 5000 camera. And I was without a camera except the one in my cellphone for couple of months. Since the finances are not improving radically in our household, buying responsive SLR camera with long enough lens I could enjoy making pictures with again, is out of question. But I bought Coolpix 4800 for $20 on Kijiji, USB cable on ebay for 99¢ plus $2.10 shipping from HongKong, and I am all set.

This is one of the first pictures of Sebastian I took with my new/old camera. It was done when we were dropping off papers at lawyers office tower.

We went today to pickup chicken skins from the farm. It was snowing. We went to look at emu birds. Sebastian was happy and exited.

Suddenly he kicked off his boots ad kept running in the snow. I could find only one of his boots. After while I realized that second one was taken by friendly Bernese mountain dog who was thinking that it is was a perfect toy. I put Sebastian in the car, changed his socks and attempted to retrieve the boot from the big dog's jaws. All in vain. But when I rang the bell to call her owner to help me the dog decided to drop her loot.

I am filling up an application for service dog for Sebastian. The wait is long, but who would not wait for a best friend?

Days lost

Last three days I did not feel too good, and just pushed through a foggy feeling in my head. At times like that I have hard time to concentrate, plan, execute even simple tasks. I feel aches fill up my body and travel and settle down freely in every corner; from toes to the tip of my head. I felt like that last year for weeks, but this time it lifted just after few days. I felt better, but not good enough to remember to pick up chicken skins I ordered last week.

Sebastian is wonderful lately, although I was told he showed some aggressive behaviours at school today. He was fine at home though, he was making a lot of joyful noises and it is a delight for me to watch his face light up with delicate expressions.

Bankers lunch.

I was working lunch today. Hotel was filled up with little nervous Canadian bankers. From what I overheard picking up plates they were asking questions about recent credit cards regulations, but their speakers were reassuring in that matter.

I do not feel good and my short term memory is in bad shape last few days. I still can pretend that things are fine, and cope staggering through the day, but at work I had to keep track of simple meal, and could not keep it in my head. So I compensated by running around a lot. But lately I trespassed on my diet and may be those concentration laps are just temporary consequences of my glutenus indulgences. Let's hope so.

SSAH Provincial Coalition

I just got Special Needs News newsletter from SpeciaL Needs Services. I wanted to find the digital version online,to share it with you and I found this link:
SSAH Provincial Coalition
I am really tempted to share the news letter with you, because it is very indicative of how "Special" the special needs people are for Ontario Government.

The newsletter is actually very useful and informative and helps navigate around roadblocks created by Government bureaucrats to prevent parents from getting financial help for helping them care for their disabled children. We are one of the families that failed to reapply before October - hence no money for us - may be just for this year, or may be ever. You have to wander though how it is possible in this country that prides itself from being one of the best to live with to make disable children wait, make process of receiving funds involved and complicated, and use every opportunity to take the money back from them.

Name changing

As I am reading the possibly relevant documents send to me last week I could not help noticing that Hamilton Niagara Regional Early Autism Initiative changed its name to Hamilton Niagara Regional Autism Intervention Program. Political move in my estimation. They removed the word "Early" from their name may be due to the fact that their intervention is never "early" since kids wait for it 3-4 years now. Here they show some sensitivity existing to the fact that their name should reflect reality. I think though that to completely truthfully express their intentions they need to change their name some more.

Reading the health records brought a wave of memories and emotions that are not easy. I had a lot of flashbacks - I went through very difficult times. Years of extreme stress. It changed me. May be for the better, but I would not wish that for anybody. Except may be of very few I have met on my path ... God forgive me!

Doctor's visit

We went to see our family doctor yesterday. She said she see a big difference for the better in Sebastian. He is growing, after years of being paper-like skin on bones and shorter than average kid. He was able to sit on the chair for few minutes waiting while I was talking to the doctor - that never happened before in doctors office. I remember visits when I could not talk to the doctor because Sebastian had a tantrum for the entire time. That is 20 minutes or longer. No, it is not easy to wait with him and he does not stay still for a long time, but recent improvement is very significant.

Sebastian yesterday looked me straight of the eye and then gave me a big smile more than couple of times. That was new. Today he does not do that. Today in the morning he he put my slipers on and marched back and forth. But he is in a good mood, and watching new Blue's Clue's tapes Jannell dropped off this morning. I am cooking big pot of chicken necks, and trying to do some cleaning - our house needs very badly . And yeah, this is the guilt I deal with a lot. He should not spend hours of watching videos, but he does. From time to time he comes to the kitchen, Or I come to his room, we exchange hugs, sing a song , flip through the book, and he runs back to his room asking for turning the TV on. Not good.

Sebastian just came to the kitchen and I asked him to put together puzzle pieces Jannell brought, and he had allergy attack with lots of tears, swollen eyes, crying and running nose. Another mystery. I moved him to his room and he quieted down, but when he came back it started all over. I gave him allergy medication and snapped a picture with my phone. Poor guy, we did not have an allergy attack for couple of months or so. This incident today makes me cringe when I think about what is coming to us with spring.

Happy lard eaters poster

My good friend send me a picture and it is a perfect illustration for my last post.
Thank you Jannelle!

Farm ride

Yesterday we went on the farm ride, and brought home forty pounds of organic chicken bones, one frozen free range chicken, big jar of goat milk for kefir and yogurt, and bag full of grass fed beef. We are carnivores. No surviving on rice and peas for us.

Kefir grains I hope are happy now sitting in a jar of goat milk in my oven with light turned on for little heat. Beside it there is jar of goat milk that hopes to become a yoghurt, and beside them a pot containing happy kombucha mother and some sweat tea. Three different fermenting bacteria cultures.

Year ago I was NOT brewing anything in my owen.

A year ago I was not giving much thought to the fact that

SATURATED FAT IS GOOD FOR YOU!

Do you believe it? I will not hold it against you if you do not ;-)

I ordered twenty pounds of organic chicken skins to cook them off for chicken fat. I wander how it all goes. Will I be able to cook off fat from them? Will it be edible? Will it smell? Till now I was cooking in organic coconut oil from iherb. And a lot of ghee made from not organic butter. I am rather reluctant organic enthusiast, but I think that on GAPS diet we eat a lot of meat and animal fat. As everybody knows if the body does not know what to do with the ingested strange substance like medication, pesticide, or heavy metal it puts it away and stores it in fat cells. So if animal eats feed with traces of pesticides on it the concentration of pesticides in its body is hundreds times higher than it was in the food animal ate. Bodies of autistic kids do not excrete heavy metals and toxins well. And that is why it is important to eat organic meat and especially organic animal fat. Therefore I am on the search of inexpensive source of it. Lots of inexpensive organic lard is something I am after. Organic butter or even better ghee at wholesale prices would be a fantastic find.

I just tried a box of organic vegetables from Plan B, and I am going to order more - it is like somebody doing shopping for you - a bit of the adventure.

Year ago I was doing NONE of this things.

Word is changing. I believe for the better.

Legal referral

So I got little intimidated by that ton of papers - you have to know - I have problems concentrating and reading and comprehending more than couple of paragraphs is a challenge for me. I have no lawyer, so I called Legal Aid, but they do not do OHRC complaints, but they gave me a Law Society Referral number and I asked for human rights lawyer, and they gave me a number. First lawyer did not do human rights, so they gave me a second number. I called, and was called back. After first two sentences I new it was waste of time even for me, but for some strange reason I continued hoping maybe that after next sentence my frog will explode in to human rights, child rights, autism/disabilities maverick of the lawyer . So the interview lasted about 20 minutes or even longer, and I got that email from him afterwards. This is a record of what I was able to communicate, and what he was able to retain.

So here it is cut and pasted to your entertainment:

New person

Human Rts - Law SocietyReferral

I have 6 yr old dysfunctional - developmental delayed - complained to Human Rts. in Dec 09 - Niagara Artistic discriminated

Waited 2 yrs for therapy - 6 months if not enough progress in therapy - he was in therapy for 18 m then they say he was out of the program - he made 89 % progress - he was denied further therapy in Nov 2008 - mom appealed the decision - b/e he is now 6 he goes to school - he does not get therapy in the school

Appealed to McMaster University Children's Hospital Autism Spectrum Disorder Service working the Ham-Niagara Regional Autism Intervention Program. - she was refused to know who the independent reviewer was except the reviewer worked for the hospital .

Denied the therapy in Nov 2008 - Sept 09 he was transferred to school.

Maria works part time in a hotel as banquet waitress - raising son SEBASTIAN on her own. Dad is unknown - yearly salary $ 17,000

.

It is very funny.

My life is grotesque - almost cartoonish. Like bad TV sitcom.

But I can not forget that life of the little boy's is at stake here. And a lesson is I have to improve my communication skills.

More than couple of pounds of legal papers.

This two binders are potentially relevant documents that were send to me yesterday from the lawyer. Not my lawyer. I do not have one. Ontario Human Right Commission s a place where people who are underprivileged, discriminated against, disadvantaged in any way could fight for their rights. Right. They can. If their case is assessed as having reasonable chance for success. But Our case does not. Because according to this letter Ontario Courts decided it is not discriminatory to terminate therapy for autistic children in Ontario after age of six. And I thought that there was no age cut off. But boy am I confused about all that legal mess. One thing I am clear about is this: My son like thousands of autistic children in Canada needs and is being denied therapy to help them achieve level of functioning that will allow them to live productively and in dignity. And I dare to think I am right. But I need a good human rights lawyer, and couple of other miracles. Hopefully miracles are not in a short supply in immediate future.

News.

When I talk to fellow parents of autistic children we have one thing in common: we do not like read news stories about autism, because a lot of them are very grim, and we know that if it will might happen to our kids. We also know that although they have an appearance of accidents or crimes - they all could be prevented by more support for kids and for parents.
So here in recent one from Victoria.

Cape Breton in December,

one in Mississauga October,
Edmonton in September

Here one from interior BC,

May in Toronto

February the States

Those were the ones I heard about without looking - just from everyday news. Grim, upsetting and very very sad. Unfortunately there is more of those stories in the news every day.

Valentine's day

I think we are treated special at St Brigid's School. Sebastian brings home large hand made decorations and treats. On Christmas we got big hamper. I am not quite in tune with school customs, and do not quite know what to expect, but I certainly did not expect that I personally will get a pretty Valentine Day present. I hang up The big paper hart and large card with poem inside in the window. I ate all the chocolates, I lit two candles, and the mood become quite festive.




Our neighbor and dearest babysitter just dropped in with little teddy bear and more chocolates! Good times :-)

GAPS diet - explained simply

part 1::

part 2 | part 3 | part 4 | part 5 | part 6

We started the diet last June. This winter we did not have much of the running nose or colds. My patience and stamina is stronger. Even my short term memory is improving. Sebastian is amazing, and everybody tells me that they see the difference in him. His stool looks almost normal. He did not have a major tantrum at home this month. So I recommend it to everybody to try...
And when you do that you will need this book;

Perfect moments

Sebastian little body produced today such good looking stool that I wanted to make picture of it and post it here. I had an urge to share my triumph with the rest of the world. But then I remembered ... the whole world do not pay much attention to little boys bowel movement results. Some parents of little babies do. Please understand. My heart was sinking every day for over four years when I saw in the toilet bowl undigested stinky mess that I new was not normal, and yet for my little boy an every day occurrence. Every day I wanted to do something about it, but I was helpless. It has been a long road for us. And it comes at at a price; I cut again my fingers again chopping vegetables, I also burned my hand. I am clumsy in the kitchen.

Sebastian was in a and very happy and giggly mood again. He wanted to be on my lap a lot, enjoyed singing songs, and was laughing, laughing, laughing...I was thinking that no matter what the past was, and no matter what the future will bring we have our perfect happy moments that will last for ever.

Speech Therapy.

Sebastian had another "best ever" speech therapy sessions today. He has new delicate array of expressions, and it is just enjoyable to watch him. He does not talk so I do not know what he thinks exactly, but it is clear from just looking at his face that he thinks something. There will be only enough money for the speech therapy till the end of March. If I could afford it I would have session every day. Sebastian likes them very much. It is the same situation like with IBI. There are therapists with expertise available. There is money spend on something else. The two can not meet each other because it is too hard for administration to figure it out. Anton Pavlovich Chekhov would probably write a play or short story about it if he lived. He would write about how blindness and absurdity of bureaucracy transcends through ages and continents and political systems.

Human rights.

People are equal and free. People are free and unequal. Equality and freedom for all.

I think a lot lately. Thoughts roll through my head and sweep through the ages and continents but they do not crystalize in crisp words organized in neat sentences. They just leave me a feeling, and I have to admit I am surprised how heavy and suffocating that emotion is.

Injustice. Discrimination. Prejudice. I never dreamed I will be looking straight in the ugly faces of those monsters. In one of the most developed countries of the world. In the 21 century. But here they are. Uttered and spelled not by ignorant and rough out by educated, and mild mannered. I never dreamed that I will have to fight for the life, for the chance, for the dignity of the most vulnerable.

I do not like confrontation. My first instinct is to flee, and that is how my ancestors probably survived. But here I am, not just a little bewildered. I do not believe I have much choice or much influence over what I can do or what is happening around us. I feel like I we a part of bigger reality I have very little control of.

Do I expect justice in just because I live is the country that thinks of itself a civilized democratic and developed one? Not anymore. I have seen too much. But I am sure I have no choice but to fight. And does not matter if we loose or win. It is a right thing to do.

Intuition

Intuition is something I have to rely on in absence of sparkling intellect or street smarts or even everyday common sense that most people have and are able to use successfully. My intuition was greatly diminished or completely shut down in the times I needed it the most. I was stressed to the limits, sleep deprived for years and panicked. I had, and still have, unrelenting feeling of urgency sitting on my chest and paralyzing fear grabbing my throat at the same time. It whispers to my ear: "you not good enough to help your son"

But now we have moments of joy and calm we did not experience before for years. Just a year ago Sebastian would still often start screaming as soon wake up . He would have long tantrums, I could not figure out the reason of, and that were leaving me completely exhausted and depleted.

Now Sebastian wakes up with a smile. On days we can sleep in he sits up quietly looking around taking in everything around him. He watches the morning sunlight on the wall, than he comes back to the warmth under he covers, hugs me, smiles, engages in play imitating sounds I make. I watch his face expressions that tell me that he is calm, relaxed, joyful and happy. And my heart sings: he is healing, he is going to be fine, he is fine.

At Queen's Park - day 82

I was very efficient and well organised today. In the morning I have printed OHRC forms and responses we were working so hard yesterday on. I put everything to manila envelopes and hit the road. I delivered the envelopes to Hamilton-Niagara Regional Autism Program, and another one to Dr Reitzel the discharge decision signer, and drove to Toronto. I found high office tower where their lawyer has an office high on 44th floor. It is so high that in elevator I felt pressure in my ears. The view from their window is great. It is powerful feeling to look down on the buildings, and tiny cars and insect like pedestrians crowding streets that look like narrow and shallow tunnels borrowed between roofs of the lower the buildings. Giant ant nest.

I left the tower and I marched through the streets to OHRC office on Bay street. I dropped off the forms, and went to Queen's Park that was just steps away from there. It was empty. But I chatted a short while with a guard, snapped a picture, and have met somebody who was interested in our story. On my march through the city back to my car I have met another handsome guy who gave me a brilliant idea I did not think before.

On my way home I have done some shopping.

Sebastian is in the great mood babbling a lot and giving a lot of hugs. What a great day!

Legal labouring

I am very busy, filling up OHRC response to response, and trying to do it and send it out on time.

With no lawyer it is no peanuts. Feel for me.

Halibut lunch

Last few days Sebastian had type 6 and 7 stool , he is stims intensely, is very jumpy and barely sleeps. Considering this, he is in rather exuberant and cheerful mood. But I do not like to watch him spin like mad. It makes me feel helpless, guilty, and irate at the same time.

I was working today, and coincidently we had waited on Americans today. They wanted ice tea in February, and even brought their own ice tea plastic cups with their logo on them. The logo said Merrill Lynch and Bank of America. Isn't it ironic that I work on those functions and have an opportunity to listen to their new CEO explaining in his speech over halibut lunch: "the reasons they have, to be optimistic". Well I do not have knowledge or an expertise, I just suspect that a lot what he said would be a spin, just considering the fact that he is the guy cleaning up, or making it appear to do so, after his greedy predecessors. But I always, always do my autism calculations in my brain so I think If the US government gave let the bankers fall, and used those money to build autism programs, every child that needs it would have their therapy given to them.

And I ponder upon those disposable plastic ice tea cups with Merrill Lynch and Bank of America logo on them in the middle of Canadian winter.

School meeting.

I had another transition school meeting today. Sebastian is lucky to meet such friendly and positive environment at St Brigid's School. They have great team of from principal through to lunch lady and cleaning crew. Each meeting in catholic school starts with a prayer and I like that very much. It sets an intension of doing the best possible, and focuses everybody on the fact that we are part of something bigger than ourselves. Nonbelievers can benefit just because attitudes are contagious among us neurologically wired for social existence members of human kind.

Sebastian enjoys everything from a bus ride to classroom filled up with many very entertaining toys. Demands on him are much lower that in intense therapy, and he is very happy play, listen to the music, visit a classroom full of his peers , and roam around in the gym. It makes me feel god knowing that he is safe and happy there, and yet I do know that he needs intensive treatment to go as far as he can.

Sebastian had a bit of stinky dirrahea in his pants after he came from school. I do not know why, because to my knowing he did not eat anything unusual. He was stiming like mad all evening, and now it is already past one in the morning and he is still roaming around.That is one of this times when brain- gut connection is showing itself again.

HUman Rights Commission- how it goes

On the picture 120 pages of papers brought over this morning by a currier. I will have to go through them all and create a response. I will have to figure out how. Due to difficulties with concentration I have hard time to read even few paragraphs. You can only imagine me going through legal gobly-goo....

I am on my own because lawyer who initially filled the application for me send me an email saying that it took her more time than she initially expected, and send me an invoice with triple of initial discussed and payed in full before she started any of her work amount, stating that she has done her job applying so I am on my own now. So from now on responding, submitting forms etc is up to me. My below poverty level income does not give me much choice . I remortgaged my house to pay for Sebastian's therapy when we were on waiting list, and got myself in considerable debt since spending just enough to get by. Hamilton Health Sciences can afford a lawyers because they pay with tax payers money. They do not loose sleep trying to figure out how will they pay their legal bills, or worrying of what will happen to children they make wait for years and take away therapy from after "limited" time.