Thursday, April 30, 2009

Fun to be with

Sebastian now makes something new more often than ever before. He is becoming more and more fun to be with. He puts my slippers on (which are huge on him) and walks out to the yard in them. He makes new sounds. He covers himself with a blanket. He giggles a lot. He picks up the objects from the floor when asked. He closes the door when asked. He puts objects back where he picked them from if asked. He picks up and flips through the books. He understands "No". He goes to bathroom by himself. He is alert and affectionate. He tantrums much less, and when he does usually he has a good reason like itchy eyes or other discomfort. He used to cry a lot on our commute. He does it infrequently now and for much shorter periods.
I am less stressed out than last year.
I am much happier mama.

Tuesday, April 28, 2009

Numbers

There is many points of view on autism. Some people think that there is no scientific proof the autism rates now are higher than they ever were in the past. They seem to be very data oriented but passionate about it and call some people with different opinions poorly informed and liars. I find it interesting. It completely negates my own personal experience, and so I hesitantly posted couple of my own comments to that post, together with link to Somali autism puzzle article. I decided to post them here.

Here is quote from that article:
Ali's parents had never come across this condition back home in Kismayo, a city where children run in the streets and everyone knows everyone else's business.
...Somalis call the "western disease" or the "disease from abroad,"
Somalis did not have the word for that condition - the same way the Inuit language never had a word for robin.

That is very similar to my experience.

I am not much into numbers. I prefer my personal observation. Low functioning autism in children like my son is difficult to miss. It also has certain characteristics specific to autism and not present in other forms of mental retardation like repetitive behaviours, obsession with specific objects, that would not be missed by gossip loving, story telling, village people from the Polish village I was born at in 1963. My natural story teller father was born in 1913 and grew up in tavern my grandparents owned. He knew every family in 6 km radius of of our home, going back many generations. He had a great memory and a lot of tales to tell, and these would sometimes include stories about mentally challenged people (it was common in our area mostly due to very poor nutrition). None of those people resembled an autistic personality. That was before the time "undesirables" with peasant backgrounds were being tucked away in institutions. My villagers would not point the finger and say "autism". But they would notice an odd behaviour, stimming, echolalia or obsession and make it into a story.

Thorough my childhood, my parents rented our house to children's summer camps. There would be about 200 kids (30 to 40 at once ) and their caretakers stayed in our home for about two to three weeks at the time every year. My parents were doing it for about 20 years. Conservatively, there was more than three thousand people going through our home, and some of them we get to know better than others through that time. I have met and heard stories of a lot of people and not one of them included anything resembling autism.

In my neighborhood in Hamilton Ontario, in about a 1 square kilometer area, I know 4 autistic children. This includes my boy, 6 and low functioning; 6 years old low functioning twin girls; and my neighbors boy, now 10 and verbal but kept from having meltdowns by medication. His mother claims that she knows about 8 autistic kids in our immediate neighborhood and I think we will make a little map in the future. But I am certain about the four I know. Four is already a lot. I asked our 68 year old neighbor who has been lived here the last 50 years if there were many mentally challenged kids in the area when her kids were growing up. She remembered one "mongoloid" boy. My perception based on immediate experiences is parallel to Somalian Canadians described in article. Also allergies were very rare in the place where I grew up even amongst "city kids". I do not have anybody among my first and second cousins (about 30 people)allergic to anything. My boy has strong allergies.

Of course, all those observations can be easily dismissed. The "No scientific proof" sentence has been used and abused many times before. I personally have a strong agnostic streak in me and try to keep my ears and my mind open. "No proof" does not mean that something does not exist. My direct personal experience has no ambitions to replace science. I can not ignore the evidence of my own eyes though.

Monday, April 27, 2009

Concentrate, concentrate!

I can not concentrate today again. It is frightening. I have too many too important things to do to afford that. I did manage to pay some of my bills today. Some were overdue already for no reason. Easy things can be sometimes very complicated. My ability to concentrate fluctuates - I have better and worse days. During better days I take it for granted. During worse days I feel like I am plowing through the fog without seeing two steps ahead. Sometimes the fog rises momentarily and I can see a little bit further ahead. Then it falls down again and even folding the laundry is an achievement. Making something to eat for Sebastian requires much effort. Cleaning up and sorting bills is impossible. Future does not exist. I hope it will go away soon. Go away!

Saturday, April 25, 2009

Alternative Treatments-part 1

How you can find yourself doing things you would consider not so long ago way too far out if not completely crazy. Chapter one

If not for western medicine I would of never been born. My mother and her brother survived birth only thanks to cesarian section. Without operation, and doctors knowledge about anatomy and antiseptics my mom would never survived her birth like three of her baby sisters before her. I probably inherited my grand mothers gene of tilted uterus, and Sebastian was born by emergency cesarian after 24 hours fruitless but agonizing contractions. It is no wander than that I had a lot of faith in western medicine.

Summer after Sebastian was born I started to have quite severe arthritic pains in my feet. They eased up through the winter but by next summer become unbearable especially in the morning and right after longer rest I felt like if I was walking on blades piercing through my feet. Also I was growing very painful bump on top of my left foot. I complained to my family doctor and got appointment with top rheumatologist in town. He was very professional, examined me, and told me that he has some new and very strong drugs, but since I was still breast-feeding I could not take them. I was not happy about it but all I could do was to go home and whine to my friends about all that. And so I have done. Finally then i started to listen to what my friends were saying all along. I remember that more than one of them suggested: "I have heard that diet helps for arthritis". Pretty farfetched idea for me at the time.

Desperate and directionless I googled those two words arthritis and diet. The fourth or five result on the first screen was a page on holistic site with this diet. I had no idea then about alkaline and acidic foods, but it sounded rather harmless therefore it could not hurt, therefore I had nothing to loose but pain. At the time I also had a very vague idea what holistic medicine actually meant. I tried it. I was not strict though. Diet asked for no milk or wheat, but I would eat Sebastian's leftover cereals since I have strongly engraved in me easteneurodpean habit of not wasting food because it is a sin. After four days of that unstrict dietary restrictions 70% to 80% of my pain was gone. One day in the morning I found myself standing in front of bathroom mirror and realizing that I walked all the way there and I did not notice my feet hurting. I was astonished with immediacy and scale of the result. And since it was just weeks after my rheumatologist visit I could not get over why the good doctor did not suggest to me such easy and harmless solution. Did he not know? Was he not exposed to the idea that some rheumatic pains can be relieved by change of diet during his 20 years of practice? I will never know. I myself would have difficulties believing it - but here I was a sceptic healed and puzzled.

My pain did not completely went away at once, and came back after I came back to regular diet, but after Sebastian was diagnosed with autism, and I have heard about diet as an aid in recovery I had no doubts, and I applied it as strictly as I could at the time. I also joined him with the gluten-free casein-free regime and after two years of moderate strictness my pains are gone. I also can not find the bump on my left foot that used to be so painful before.

So here you are: end part one but there is more to come.

Friday, April 24, 2009

Appeal answer 2


I have received the answer to my answer to appeal answer letter. Makes sense?

Click on the image to enlarge.

Here is my answer to it.

Thursday, April 23, 2009

Amanda Baggs blog

Joseph commented on my last post and suggested reading What not changing us means. That is link to an entry in Amanda Baggs blog and like a lot of her writings a must read to anybody who's life was touched by autism.

Joseph also has a blog and his last entry Adult Outcomes from Toronto and Utah. Then and Now. is very, very interesting. Dr Peter Szatmari becomes more and more enigmatic figure in my eyes.

Wednesday, April 22, 2009

SilentMiaow

Amanda Baggs is a woman in her twenties living with autism. She does not speak, but she types (very, very fast), and can use camera and computer to make her own videos. Couple of years ago she published video on YouTube titled "In My Language". It is a great insight into autistic person reality.

There is more of them that are great eye openers: If You Can Do X, Why Can't You Do Y? My All-Purpose Answer.

Being an Unperson and About Being Considered "Retarded" should belong in schools curriculum.

How to Boil Water the EASY Way is my favourite. I can identify with that one.

I think we "neurotipicals" should shut up and listen. Although as parent of low functioning autistic child I do not agree with philosophy of some autistic activists of not interfering with autistic children minds - since we humans are social creatures and development of our brains depends on what we learn after birth by our upbringing and environment. Severally neglected, stimulation deprived, neurotipical children have brains that are physically smaller than average, and it is impossible for them to acquire important social skills if they did not do that in early childhood. I think that autism also causes something similar to stimulatory deprivation from neurological reasons.
I do not really want to engage in that discussion. And I do not think anybody can talk me out of toilet-training my son. And he needs therapy to do that. He also needs therapy to learn how to wash his hands, brush his teeth, cross the street, dress himself, request his needs. Who knows, may be even going to store, counting his money and buying something he likes. One day...

Tuesday, April 21, 2009

The New York Times article

The situation of autistic kids in States is also difficult, but their administration seem to be years ahead of ours dealing with the problem.
Here is the article.

Benchmarked film website

I think this will be worth seeing. For now site is up at www.benchmarkedfilm.com
I am choking up even watching the trailer.

Monday, April 20, 2009

Sleepless in Hamilton

On Friday Sebastian fell asleep around seven. He has waken up around midnight, and did not feel asleep till noon. I was napping on and off throughout the night. On Saturday I had to go to work, and after work I went to see my friends. Very seldom I can do this now - just go out for couple of hours and have a conversation with old friends and people I hardly know, and sometimes also complete strangers. But this time there was a grand occasion; my dear friend Annamaria was visiting from States. Thanks to kindness and connections of my other old and dear friend Ted we had the best time at the Hungarian Canadian Cultural Centre. It was almost surreal experience for me; a blast from the past; superb live authentic hungarian folk music and dancing. I came home around 3 in the morning and in spite of 6 hr of good sleep, I could not get myself together to do the simplest task all Sunday.

I wish somebody came up with a pill that could bring power of concentration like some other pills can take a headache away. When I can not concentrate - I can not complete any task unless I am carried over by a routine or a habit. Unfortunately I am good in breaking and shifting the routines and not keeping them. So at times like this I fall flat on my face and just dream about the housekeeper.

OK I have to confess now; I just have lost it and forgot where that post should be going. See what happens? I need gifted secretary too.

Friday, April 17, 2009

Birthday Pictures


Here are the famous GFCF delicious cupcakes.



Bushy eyebrowed inspiration.

Bushy eyebrows are not the only thing that I and Susan Boyle have in common. We both have double chin and she is also only one year older than me. In case you have not heard or seen yet here she is.

Monday, April 13, 2009

Autism, vaccines & double talk

I usually do not think about vaccines. Too much guilt to deal with when I think how close I was from not vaccinating Sebastian. But the double talk of officials is fascinating for me to watch. And makes me think how many other issues we - general public are sweat talked around without us taking notice. And where is the line between an open lie and deception causing harm and being "political" around the issue.

May be one day Good will help people who believe in justice.
Here is the clip I stumbled upon.

Sunday, April 12, 2009

Easter Sunday

Today is Easter Sunday. The weather is fantastic. Sebastian has a running nose. Yesterday he attacked a long hair blond teenage girl in a church during food blessing, but did great at the party. Very busy and loud, lots of people, rooms, new things like open fire barbecue, and he initially was bothered by noise and crowd, but later he relaxed and had a great time.

Today I have lots of formal letters to write. I could use a good lawyer.

Friday, April 10, 2009

Wednesday, April 8, 2009

Red Tub

Sebastian loooves his baths. And thanks to the red tub we are enviromentally friendly, and saving a lot of water. If I let him he would stay in it for hours. He is growing so fast now that he will soon outgrow it.

Tuesday, April 7, 2009

The Somali autism puzzle

Two of my friends sent me this article from the Globe and Mail. Interesting. Here is a quote from the article.
Ms. Hassan can barely afford organic food, let alone speech therapy. Ali and Abshir attend special education classes at a public school - but it's not enough.

Mohamed has 300 words, says Ms. Roble, and there are specialized communication devices with visual cues that could help him communicate. "But he needs one-on-one teaching, and we cannot afford it."

She, like Ms. Hassan, must wash, dress and feed her son, hold his hand when they walk down the street, and watch him at all times. What will happen when these boys turn 18?

The stress of caring for two autistic children and one learning-disabled child already pushed one Somali mother over the edge. She had a nervous breakdown and had to temporarily relinquish her kids to the Children's Aid Society.

Ms. Hassan and Ms. Roble vow to fight on. "We can't regret what we have. There are always others who suffer more," says Ms. Hassan. "But we need help."
I am so sorry. Unfortunately, the situation of that family is typical for Ontario: children without therapy sliding into mental retardation, and parents strained beyond their limits. But our elected officials at the same time are bragging how much "progress" they have made with autism programs, and government funded "experts" get very creative inventing new ways to terminate therapy for kids no matter how much it is needed.
For us parents, it feels like living in a nightmarish twilight zone. I do not know what it will take to get us out of it.

Generalizing is not always that bad.

Winter is back. Snow is back. Yesterday Sebastian ran out into the yard barefoot again. I have a tendency to let him learn from his own experience, and after he did it last time, it worked for few months. This time he kept coming outside, and back, and again. I was worried that because of his higher than normal pain threshold, he will hurt himself and get the frost bite before he will learn not to go outside in a snow without shoes. It is hard even for me to guess how much he understands.

He would run back and forth, and leave open the door wide open behind him. "Close the door!" I shouted, but since he was running, he was already at the bathroom. Sebastian stopped, turned around and looked at me, turned around again and pushed the bathroom door to close it. I was surprised. He generalized. I have never made him to close the bathroom door, and usually it stays open.
OK, maybe not everybody can understand how big the little thing like that can be, but I was surprised and exited. There are a lot little things that Sebastian does lately that inspire me to fight for him harder.

Sunday, April 5, 2009

Sebastian is six

Today is Sebastian's birthday. He is six today.
He had a good day. He was petting the cat at the farm, and he seemed to enjoy touching his soft fur. He initiated it himself - stretching his hands toward the cat. I was surprised because last time I remember him paying that much attention for so long to an animal he was around one. He was looking at the goats like he was seeing them and was interested in them also. After a while he dashed out into the fields and I had to pull him out of a puddle. Happy times.

Yesterday our neighbor came with nice and thoughtful gifts for his birthday and we asked Sebastian to say "Thank You" and he made the sound. He was pretty close too! Also when we came back from the market I said "We are home" and Sebastian repeated "home". He also, when I ask him, repeats "Dej" - that was his first sound when he was one and it means "give me" in my Polish dialect, and is often one of first words of Polish babies.

As I am writing, I noticed that these are a lot of little things.
That was happening before though - Sebastian sometimes would do amazing thing like singing along "ba, ba, ba!" with the Baby Einstein DVD for a couple of days, and than he would never do it again.
But may be it will be different this time.

Saturday, April 4, 2009

Carly Fleischmann on Larry King

Carly is a person with very formidable power to make her dreams come true.

She was attending the same school Sebastian is, and I have seen her very often going out on the walk just at the same time I was picking Sebastian up. It is hard to say that we have met, but I new about her, and may be, just may be she new about me - Sebastian's mom. So when I have learned that she has a Twitter page I signed up to it just to follow her. May be some day I will even" twitt", but for now I will stick to just blogging. Carly also has a blog so I linked it to mine right away.

Today Carly was on Larry King Show and it took her just few days from getting petition going, and getting on the show.

Go Carly! World is yours to be conquered, and you are doing it!

Organic Owen

Sebastian's birthday is coming on Sunday. I did not celebrate his birthday last year, and I will explain why some other time, but I decided this year we should do it with style. I was thinking that since about half of the kids in Sebastian's school are on GFCF diet, we all should go gluten free, and casein free, so nobody would feel excluded of different. I did not feel up up to baking myself, and Tanny suggested going to Organic Oven bakery. I have tried their delicious cookies before, and off we went to Brampton. Their cookies are fantastic, and professionally packaged, available in many health food stores in Toronto and I expected busy bakery, with fancy store front and maybe cafe, and a lot of people running around deliciously smelling work shop if not a little factory at the back. I was very surprised at what I have seen. It just proves that some people are more capable than others. The store was one room one woman operation. She was making cake, taking out cookies from the owen, taking orders by phone, packaging our order, working cash register, and all the time she managed to chat with us very graciously. She also comes up with new recipes, opens new stores, and takes over the world with her beautiful smile and poise. What a woman! Going on gluten free diet is very difficult at first, and if you add to it other allergies; egg, milk, nuts, it is very difficult to just have a cookie that tastes anything like cookie. Do not even mention a cake! And here she comes to rescue: Super Woman of Baking Goods Deprived. She happened to have forty little gluten free casein free cup cakes that were baked for somebody else, and I picked up some cookies for Sebastian lunches. We will be back.
Here is an article that will tell you more about that amazing lady.

Friday, April 3, 2009

Squeaky wheel

Yesterdays government decision to restore Delaney funding gave me hope. I was riding on it all day today. I have emailed the ministry guy we have met on Thursday. No answer yet. I think I will have to write more letters, email more people, maybe meet some people directly. Nothing gets done without a lot of squeaking.

Thursday, April 2, 2009

TV clip

So here they are: two autism stories combined in one 90 seconds long clip.

As article says:

"Late Thursday, the McGunity government decided to restore the (Delaney) funding after the issue was brought up by the NDP in the Legislature."

One child will have the therapy she needs so desperately.
One big victory.
Couple of thousands more to go.

Autism Resolution Ontario

Today I attended another news conference. This time to announce new dynamic advocacy group. The new group is called Autism Resolution Ontario (ARO). I had luck to participate a little and witness great organizational and intellectual talents of core members of ARO. I have a lot of faith in its future. It also promises to be quite exiting experience.

After the conference we have met with staff members from the Ministry of Children and Youth Services and Minister Deb Matthews dropped in for few minutes to hear our concerns, and assure us that the ministry is working very hard and has done a lot of progress in helping autistic children. She said that they tripled the amount of money spent on autism. After she left the staff members told us that number of children receiving autism treatment tripled also from 400 to 1200.

On my way home I have made some thinking about of what I have heard and seen. So... if the number of children receiving therapy tripled and so did the funding. The waiting time for average child should stay the same, but it doubled from two to four years, in spite of children being discharged like Sebastian and Delanie after just few months of treatment. Where did the money go?

And I have another "simple math" thought. If our elected officials were personally responsible for outcome of their actions.... just the thought.... and there are 1600 children waiting on therapy in Ontario (conservatively)
and 50% of them could be saved from mental retardation* by timely and intensive treatment. They are loosing that opportunity thanks to government inactions or even worse; actions like benchmarking. Half of 1600 makes 800. Eight hundred lives that could be very productive, and other 800 lives that could be much happier more independent and less costly. And every individual has a family, and effects at least 4 more people lives directly, parents siblings grandparents.

So thousands of destroyed lives is going to be your legacy Minister Matthews, Mr McGunity... unless you will do something very brave now. Will you?

*yes I am using the harsh R word not to offend anyone but for impact value and because it is still used as scientific term. If you are not comfortable wit it read "mental handicap", "developmental delay" or "institutional dependency"

Wednesday, April 1, 2009

Paul Ceretti news conference

Paul Ceretti is a father of the two autistic twin girls who are the same age and autistic like Sebastian. They are being discharged from therapy exactly the same way Sabastian is. I went today to their news conference in Queens Park. I will post the video of it as soon as I will get it.
Here it is.