Spring is here!

Can you tell?
Our backyard crocuses blossomed.

Sebastian loves staying outside. His eves are pink. He stims, but today he does not take things to his mouth, and I have seen him rotating his objects of interest often.



He lately covers his ears a lot. Even when I just talk to him. I try to keep my voice low. He follows the instructions to pull his pants up, and put your socks on, without actually looking at his socks or his feet. He uses his peripheral vision a lot. He is calmer and more receptive than he ever been.

The day after

Here is the decision of the OHRC if you interested.
I haven't read it yet. I really can not make myself do it. Part of me still feels rage when I think about it all for too long. And I have important things to do, and anger and despair are not the emotions that can even remotely help me to take care and help to grow such exceptional and delicate child Sebastian is. The day after is the day for rest and distancing ourselves from all the negative emotions, time for regrouping, and doing all the things I did not have time to do before the hearing.

Sebastian was very tired and low energy with running nose and puffy eyes last night. Allergy season is not even quite here yet, and Sebastian already has reactions. So I let him sleep longer, and he did recuperate. Now during the times when his stiming is quiets down i can see him looking around and taking everything in. He is such a delight. We had a great day together.

OHRT hearing

The hearing was short, and not very sweat for us. We new that we have very slim chances to succeed so the result is not a total surprise. We were told that I failed to prove that Sebastian was discriminated against. What surprised us was that they claimed that they did not use Continuation Criteria in case of Sebastian. Their lawyer admitted though that they are using the Continuation Criteria now - so be aware!
My friend simon and I spend a lot of time preparing the opening speech I did not eventually use, and shorter summary that I did use. We were reading through and trying to understand previous cases involving autism. I had help from a lawyer from ARCH Disability Law Centre. They were not able to take on our case but being able to consult was very helpful for us and allowed to understand a little bit better the legal differences.

I think though that nobody should feel discouraged. The policy of discharging kids because they made slower progress because they are low functioning is clearly discriminatory. We lost because some technicality I do not even understand at the moment, and because we did not have a lawyer who specialize in human rights code on our side. So we failed to prove the discrimination, and Dr Reitzel can now sharpen her pencils an sign discharges with much more ease and confidence. But I am sure that somebody who will come after us can learn from our mistakes and succeed.
I do not have available yet the official ruling but I will post it as soon as I get it.

Big shoes to fill....

We payed a short visit to Simon. Sebastian enjoys stepping into shoes even, and may be especially, when they are way too big for him. That is one of the few things he learned on his own, and does it spontaneously.




Thanks for the pictures Simon!

At Williams

Williams is our favourite coffee shop. It is at the water front, with great views, boats, ducks, breezes from the lake, and the cafe has conformable casual decor, chairs and tables, booths, and even four couches surrounding a fireplace. Sebastian loves the leather couches. They are almost always taken, but when they are free he takes them over.
He is still young enough to get away with that.

OHRT preparations.

I am trying to prepare my opening speech for Monday's OHRT (Ontario Human Rights Tribunal) hearing. I feel like I'm back in high-school trying to prepare for a test or exam. I was never a good student. Often I would show up in class without my homework done. I would just slide from mediocre grade to mediocre grade via the path of the least resistance. I will be fifty years old in a couple of years, and my aversion to studying is as fresh as it was during my school days. Yuck....

So I am talking to myself: You can do it... Think positive.... think positive... think positive...

School transition meeting.

We had anther school transition meeting. I am very grateful for how Sebastian was able to find a friendly environment filled up with many kind and devoted people who genuinely like and accept him.
He transitioned very well. He likes his school. Now comes the challenge of the teaching part, of actually getting him to learn... I hope somehow it will fall into place. Miracles happen ...

Gatekeepers preventing children's access to therapy results in class action suit

Parents in the US also have a difficult time fighting for their children's rights. In the United States, children with autism/disabilities have protections under a federal law called the "Individuals With Disabilities Education Act" or "IDEA". What would it take to establish similar law in Canada?

In Canada we do not have anything like this, so if one judge decides that denying therapy for autistic kids is not a deprivation because they do not die from not having it, and that it is up to provincial politicians to decide what services the government will fund, and the other judge decides that a six year cut off point for therapy is not an age discrimination, and another decides that if the paper trail is done according to the rules it is reasonable thing to discharge a six year old from the therapy - that's what happens! Parents of autistic children are struck dealing with their child's devastating condition. They struggle under financial pressures even before they decide to take legal action. Government-run agencies dip into the tax payer's pockets to cover their lawyers and court expenses.

Here is a very interesting article about a parent from California who has a son with autism. He is a resident of the Modesto/Stockton area who was denied ABA services.

Canada Ratifies UN Convention on the Rights of Persons with Disabilities

March 11 2010.
The headline just few days ago: Canada Ratifies United Nations Convention on the Rights of Persons with Disabilities

What does this mean? Is it for real or just another empty gesture?

This government website article assumes a familiar self-congratulatory tone:

"...Canada has been an international leader on disability and human rights..."

Yeah right; the treatment of autistic kids, and people with other disabilities proves it. And acts like taking away Special Services at Home funds for families who did not reapply six months ahead, like us, proves it as well. And long waiting lists for many services, group home placements etc. that in fact are not waiting lists, but denials of those services. This has been my experience. A lot of gesturing. A lot of documentation. A lot of meetings. A lot of self-congratulatory statements. And where are the stories of the people who are actually benefiting from these gestures on the part of government?

I really wonder how and if government could be held accountable. I wish that signing that ratification was more than a handshake and photo opportunity and a free luncheon for our officials.

Four-Way Agreement

The internet is a blessing. I just got an exiting email with a lot of information from an outstanding autism advocate and mother in California. In California, parents were able to successfully challenge the document that Ontario's Continuation Criteria is based on. Here is a quote from a newspaper article detailing this case:

Rules that outline how certain services for autistic children are provided in San Joaquin County are discriminatory and violate education laws, some parents argue.

They have called on state and federal investigators to examine and eventually eliminate the county's Early Intensive Behavioral Treatment Four-Way Agreement.

Read entire article.

There is more information to come.

Geese

After today's speech therapy session we decided to go to the park since the weather was great, and the sun was shining like in the summer. Sebastian was in a good mood. There were geese and ducks and couple of swans in the water close to the shore.

Sebastian was exited, looking at the birds, clapping his hands and exclaiming "Ga-ga-ga! I thought maybe it was first time in his life that he was trying to say geese (a bit of the stretch there) but he really was looking at them and not ignoring them as he usually does. He wanted to go down to the water and I did let him, and he was fine for a short time. I thought I was risking him getting his feet wet, and I think it is a good way for him to learn by experiencing the unpleasantness of cold water on his feet after I warned him not to go to the water. But he did not just wet his feet. He dashed into the water up to his waist! He got wet up to his armpits. It is March, and in Canada the water is still really cold. It was also very dirty at that spot. Fortunately we were close to the car and I always carry extra clothes in it.

I wander if he learned anything at all from that experience. Maybe we should go there again soon. I will make sure I have my camera with me, so as to fully exploit the entire situation for entertainment purposes. But I think I will wait untill the weather is bit warmer.

Gaps Intro Ideas

I am trying to do a Gaps intro while on March brake. Sebastian is so good and not to fussy, but it is easy to run out of ideas, and food becomes to monotonous even for him. I found this link with great intro ideas. I will try to make something tasty for my little one today.

At Queen's Park - day 83

We made these pictures on Tuesday, and I forgot to post them!
So since we were all at Queens Park anyways, we stayed there with the sign on for a little bit. We payed a pretty hefty price for it, because I did not realize how late it was, and we ended up coming back home in the peak traffic hour, and it is no small potatoes on QEW. In the picture is my dear friend Malaka, who was helping me watch after Sebastian.

Headache.

After the press conference finished I started to have a slight headache, but by night it was very very bad--almost unbearable, with chills and sweats. I took couple of Ibuprofenas went to bed. I am feeling almost fine now, in the morning, but I am a bit shaken, because it was very bad - worse than ever before, and rather unexpected. Maybe it is just menopause. Or may be growing pains. I must be growing horns.

Andrea Horvath press conference

We went for the Andrea Horvath press conference in Queen's Park.
Here is the articels about it: in Hamilton Spectator, The Star, and CBC.

Paul Ceretti was there with his girls, telling his story once more. For me it was great to see everybody again. There are a handful of parents who attend such occasions, and we update each other about our children, and chat and it is all very nice. But our kids are not getting therapy. We struggle, but our children are regressing. Something has to change. We need a revolution.

OHRT

I was not able to secure any expert witnesses, and apparently missed something when filing in the documents although I delivered them by hand personally, and I got an email from the Ontario Human Rights Tribunal that I do not quite understand but it sounds to me like the hearing might happen or it might not happen.
Bother.

Banana

It is raining outside, and we spent all day at home, but what a day it was!

Brain Yoga

I think its harmless to try. And when you do try it, it keeps you smiling, and that in itself is a benefit for the way too serious and way too worried ;-)

1 in 100

Thirty years ago autism affected 1 in 10 000 children.
When Sebastian was diagnosed and untill almost four years ago, official statistic cited the number of autistic children as 1 in 360 . I heard this from dr Peter Szatmari at the time.
Then the number become one in 150, and now it is 1 in 100. When they counted in Britain the number was 1 in 58.

So if the autism epidemic will continue to progress at the same rate, in four years we will have 1 in 25 children with autism. In eight years it will be one in 1 in 6! Add another four years of similar progression, adn 12 years from now and more than half of our children will have autism. A couple of decades down the road it might be that non autistic people will be very rare. Perhaps only one in ten thousand neurotypical people will be found among a sea of autistic.

It is just a thought, an idea for science fiction movie, but what if it really IS happening?

The 'Dirty Dozen' of Fruits and Vegetables

12 Fruits and Vegetables Most Likely to Contain Pesticide Residue
Peaches
Apples
Bell peppers
Celery
Cherries
Nectarines
Strawberries
Kale
Lettuce
Imported grapes
Carrots
Pears

''Clean 15'' fruits and vegetables that are least likely to contain pesticide residue:
Onion
Avocado
Sweet Corn
Pineapple
Mango
Asparagus
Sweet Peas
Kiwi
Cabbage
Eggplant
Papaya
Watermelon
Broccoli
Tomato (some time ago it belonged to the "dirty" bunch).
Sweet Potato

I did not know this.

Autistic Persons You Don't See on Sitcoms, Reality Shows or Hollywood Movies

I found that clip on this post, at Facing Autism in New Brunswick blog.
There is nothing much I can add as a comment. Only that I have seen the children with similar severity and very similar behaviours improve at Behavioral Institute Children College where Sebastian was attending. They have families who can afford the therapy, because Ontario Government would not fund it. But Ontario Government would fight in court parents of autistic children who dare to demand therapy for their severely autistic children. And they call the therapy "time limited " now. And they have Continuation Criteria according to which they measure their abilities and worthiness. Here is what autistic kids in Ontario should be able to do after six months to have their therapy continue:

AFTER SIX MONTHS OF PROGRAMMING
Foundation Skills

Motor Imitation – imitates 10 familiar actions with objects and 10 familiar gross motor actions
Imitation - imitates 10 sounds/phonemes or 10 ASL signs
Manding – 5 impure mands (with objects present)
Receptive - 5 one-step instructions
Matching – generalized identity matching of 10 novel stimuli (either picture to picture 2D-2D or
object to object 3D-3D)
Labeling – 5 receptive tacts (i.e. identification) in any communication system (e.g. PECS, Sign)
Attention to Task – can tolerate and demonstrate compliance for 4-5 minutes of intensive
teaching at a table

So reality in Ontario is this. You child is diagnosed with autism. You wait months to get on official waiting list, you wait years (3 to 4 ) for therapy, and after you finally get it if your child will not be able to do above after six months - you are cut.

And Ontario Courts agree with Government As in this ruling against Delanie six years old severely autistic girl who was like my son discharged using those criteria, and who is our neighbor. We were commenting on that brilliant decision it n our previous post.

Water saving device

Sebastian is outgrowing his red tub like he did his stroller and car seat.. He hardly fits in but for now still has a lot of fun in this ecofriendly water-saver.

Decision

What I just realized is that five years has just passed since Sebastian was first diagnosed with autism. It has been five years when my emotions were mostly negative. Fear, grief, powerlessness, despair, anger, worry, tension, frustration, fillings of guilt, regret, and inadequacy and even hopelessness at moments. I was doing my best, I have never done enough.

We survived. I have changed. I look much older. I have to use glasses now. My experiences made me into much more compassionate person. I am also getting a bit paranoid - quite opposite my easy-going nature, well, may be that is the post-traumatic stress disorder kicking in. Besides, as my friend says a little bit of paranoia never killed anybody. I am not sure if the idea can be scientifically proved ;-)

So my intention is this: I would like to wrap it all up, and put it behind, and never even look there. Now it is time for delight, exuberance, and glory - the quiet kind.
I am very grateful for the people we have met on our way. They gave us a lot when we were not able to give back. And we kept taking. I hope one day we will be able to give back. Tenfold.

Today I am grateful and hopeful. And lucky.
That is my decision.

Spring day

I am feeling good today. I am imagining a reality where every autistic child is getting what they require to develop into amazing people that they are. Sebastian being one of this great kids.

The Art Show

Our friend had an opening of his paintings in an art gallery, and we decided to go. Everything went well untill I took an unnecessary turn and we got lost. It was dark, and Sebastian started crying. I did not realize at first realize that he was having one of his allergy attacks again.

When we finally arrived he was still crying. We went to the show, but he was screaming, flopping to the floor and covering his ears. We went back to the car, and I found some antihistamines, and gave them to him. He quieted down, but only on our third return to the gallery. After that things were fine.

No grain diet

For most of my life I would not fit a health food enthusiast profile. Maybe that is why GAPS was the first diet I have ever encountered that eliminated grain. After decades of hearing the opposite, the idea that saturated fats are good for you was also quite new, and, at the beginning, too radical for me.

A couple of days ago I was googling a chicken fat rendering recipe (yes!). And I found it (where else!) on PaleoFood.com. This is a Paleolithic diet site. I like the Paleolithic diet premise that our digestive system evolved while we lived as hunters gatherers, and therefore we did not eat grain and dairy foods everyday in every meal.

Yesterday I saw a repeat of the Dr Oz show that had an alternative medicine theme and on it. There was a guy named Joseph Mercola. I googled him, and he also has written a book The No-Grain Diet.

We have been on almost grain free diet now for quite few months. Sebastian is doing great on it, and I also feel much better.

Walking to the store.

We had to get some bananas, and the weather was great. The store is 0.7 km from our house - I checked on the Google maps. All through residential low traffic streets with paved sidewalks. But Sebastian weighs now about 50 pounds, and so if he would refuse to walk it would be rather hard, if not impossible, to carry him back home. He is outgrowing his stroller, and there would be no point really do drive there. We tend to live dangerously, so we went to the store.

And Sebastian was great. All the way. And in the store we did not use a shopping cart as I usually do, putting Sebastian in the larger main section of the cart. He only flopped down once: right after we entered the store tried to kick his boots off. He was walking nicely, and although he was grabbing at some items, I managed. We bought some bananas, a large 10 pounds bag of onions (because it was on sale for $1.47) and a cauliflower. On our way home Sebastian was splashing in puddle water with his yellow rain boots. When his hat dropped on the ground, I prompted him to pick it up and put it on his head, and he did it. He was holding my hand most of the time.

For me it was real success, and a delight.

I am a proud mama. There is something about Sebastian, that makes me feel that I am around very noble, genuine and precious presence that needs to be protected and cherished. He is very easy to love.

Another autism murder.

I found this disturbing article today:

Gigi Jordan, Manhattan "Socialite" Kills Autistic Son, Fails Suicide Attempt

In the comments under the article I found this one that I think is worth quoting:

It is such a rare and unnatural event for a mother to kill her own child unless she is mentally imbalanced or on drugs, and with this poor woman it appears that both are distinct possibilities. (.......)

So many things can throw the brain chemistry out of balance. Continual stress produces adrenal exhaustion resulting in other hormone imbalances, and depletes nutrients especially the B vitamins and magnesium. An example is soldiers in combat who live 24-7 in a state of hypervigilance. Since God didn't design the human being to live in a state of "Kill or be killed" so often these war vets return home with severe depression, post traumatic stress disorder, and many commit suicide. They survive the war only to end up with drug and alcohol addictions in order to cope. Parents of children with autism are often "living in a war zone".

So here we have parents under continual stress trying to cope with and find solutions for their children who are under continual stress....

And another parent comments:

... you should be able to understand how horrifying it is to see your child in pain and feel unable to help him. To feel like everything you do is not enough, everything you've tried has failed. To feel like there is no where to turn and nothing left to try.

I can completely understand getting to the point where one might come to believe that their child would be better off dead then to continue living in pain and anger and confusion, with little to no "quality of life". Parents of children with terminal diseases make this decision every day. Yet because autism isn't life-threatening (unless you count the fact that many need constant monitoring due to flight-risk, no awareness of danger, self-injurious behavior, or seizure disorders) our children's suffering is overlooked and considered acceptable.

Mother of the child were socially and financially privileged, and yet it did not prevented tragedy.

Here is another article: Blessings to count: Autism can wear thin even families with deep pockets

So even privileged parents buckle under stress of parenting autistic child. And yet most of parents of autistic children are not cushioned by money and social status. . And we have to fight for our kids against entire systems of government institutions established to help them. In theory because in practice those systems are thoughtless heartless and couldn't care less. Well, it has been my experience. So far.

Let's hope the times they are a-changin'...