Monday, May 31, 2010

I am posting with permission an email forwarded to me today
Hello Everyone,

This Wednesday morning an extraordinary question will be asked on the house floor about the benchmark analysis. I can't give away too much detail, but if you wish to be present in the gallery the question will be asked about 10:30 am though you should arrive earlier to clear security and be escorted to the upper chamber.

It is fair to say that some very disturbing information has been uncovered and this affects all families in Ontario.

I will be speaking to the media afterwards. It is absolutely paramount that parents understand what the government is attempting to get away with.

If you belong to a list or have private contact lists or a list owner or just know someone who may want to attend can you post this tonight that this is happening . There is an event of importance on Wednesday at Queen's Park that will shocking for those who would like to be present for the questions. That they should contact Andrea Horworth's office at: ahorwath-qp@ndp.on.ca attention: Sheila White, Executive Assistant to NDP Leader Andrea Horwath ( 416-325-2777 ) so your name can be given at security. It will not be a long event, but a gallery of families would be most welcomed to look down upon the house. I believe you must be seated prior to 10 am and you must pass security prior to going up to gallery. You must contact her tomorrow in order to reserve your spot.

I will be on the floor with my son Lucas.

Norrah Whitney
Executive Director of FEAT of Ontario
www.featontario.org


I will do what I can to make it on time, although it means I will have to push through QEW in the pick of the rush hour. But I have good practice - I have only done it couple of thousands time before... :-)

Sunday, May 30, 2010

Colours and textures....

I did not write for the last few days, because what I've been doing lately is poop watching. It seems that we are out of the woods now, but it got worse before it got better. We went through the entire stool scale, and we could add few more types, and many more interesting colours and textures than those already listed. That is how it goes. I am becoming a little self-concious about it because I caught myself extrapolating a little too extensively when people asked how Sebastian is doing. Things are much better now: we celebrated some type 4! But I noticed just a little mucus yesterday still , and the eczema is back this morning.

Eczema might be related to the fact that yesterday we had to double over the allergy medications. Allergies hit Sebastian with a fury. It happens in the evening and in spite of regular over-the-counter antihistamines. So the poor guy is going from his normal happy self to first screaming, followed by a snotty nose followed by red and swelling quickly eyes. It all happens in minutes and in spite of taking the antihistamines. I think he is allergic to specific pollens and he is probably getting hits of them depending on the location of pollinating plants and wind direction. The eye drops would probably be the fastest remedy, but they are very difficult to apply without the assistance of second adult since he resists vigorously.

All those words starting with the letter "a" I would gladly forget: autism, allergy, antihistamine. I bet I could come out with some more...

Thursday, May 27, 2010

One billion dollars.

We are waking up to a little alarm clock radio that is set up to CBC radio. Today I heard,
(did I heard it right?) that Canada is spending over a billion dollars for G8 Summit Security. So in short Canada spends more money to prevent people like me from protesting under the Queen's Park during couple weeks of the summit, than on saving autistic children's future for years. There is money for security officials readily available. They are important people after all. Canadian autistic children - from looking at the government willingness to protect their future - are less important.

No billions for them.

Wednesday, May 26, 2010

Chicken broth days

Bodies have the natural desire and ability to get well. But often things get worse before they get better. After couple of days living on organic chicken, vegetable broth and boiled chicken meat Sebastian got better and his diarrhea eased off. When he got briefly weak and slept during a day from die-off I was ready for it and did not worry, but when he vomited the next day when I was expecting him to get better I was taken aback completely. I think what happened is I gave him some cod liver oil, he was drinking a lot of water, and somehow it was too much for his healing stomach. So I kept him at home on Tuesday. His appetite picked up considerably, and he was calm and alert, getting in trouble climbing bathroom shelves, opening toothpaste tubes, spilling my baking soda, splashing water in the sink. He was giving me eye contact and a big delighted smile each time when caught doing it. When he stims he does not get into trouble like that. He runs around with his piece of string or rubber band and hums chewing on it oblivious to most things around him.

I think he could use a couple of days of GAPS intro. I sent him to school today, and I am working tonight, so it is very likely that he will get into bread or other GAPS-illegal, yeast breading food from his babysitter home. It's frustrating, considering how hard the last few days has been for us. All I can do is think that we have a long vacation coming soon, and I will have plenty of time to indulge in all kind of dietary extravagances.

Monday, May 24, 2010

New Creative way of advocating

New creative wave of autism advocates is a good news for autistic community.
Here is an entry from new blog that uses cartoon strip to explain situation in Autism Community
http://ivote4autism.blogspot.com/

Special Ed for Autism: Illustrated (whole strip)

click on the image(s) below to enlarge

(new image will open in this window -

please hit the back button on your browser to return to this page)


Too see individual images go to:
http://ivote4autism.blogspot.com

Way to go! Congratulations for a great idea!



Sunday, May 23, 2010

Déjà vu

I do mot want to write this post.

After stomach flu followed by two weeks of antibiotics for his teeth extractions, Sebastian's stool and behaviour have regressed to that from year ago. His stools are large and full of undigested food, carrots, and green beans which look as if he just spit them out. He feels the urge to make many poops a day, and when he feels the urge, he often does not make it to the bathroom. I spend a lot of time cleaning after him and washing floors and covers. His allergies are so strong that his over-the-counter medications do not always prevent sudden eye swelling and redness, preceded by outbursts of crying. His stimming is intense and ugly, and the eczema came back, covering his forearms with blotchy red spots.

We are doing the Gaps diet intro, eating mostly broth and cooked chicken. I hope he will get better quickly.

I almost hope.

Thursday, May 20, 2010

Oxygen TreatmentOxygen used in fight against autism

The article is here

A couple of years ago I would run and get into debt just to get this treatment for Sebastian.

Now I think: would I try it if I could afford it? Yes, it sound harmless enough, and if it could help just a little it would be worth it.

Another treatment money could buy goes on the list things we can not afford together with much more essential things like ABA and speech therapy.

Monday, May 17, 2010

Jumping Joy

Yeah, we had a lot of that today thanks to Jannell. She brought Sebastian a trampoline. Until today Sebastian was using our bed to jump on, but he has become too heavy, and our old bed is not giving him a good bounce anymore. Thanks Jannell!

Friday, May 14, 2010

Plum tree help

I have the best neighbors. Pat came with heavy duty equipment and a family member and they performed a miracle. They raised the tree!



Thursday, May 13, 2010

Cross-country race

Hundreds of kids, colorful shirts, wet grass, children racing an cheering for one another, and one boy who do not comprehend what is that place, that is that noise about and what a race is.
And one mother who wished she took a pill the would make her unable to compare this morning.

Wednesday, May 12, 2010

Mothers Heart and Teeth Extractions

I was helping to hold Sebastian down in a dentist chair together with three assistants and a dentist. They are all are very skillful, fast and experienced professionals who specialize with dealing with children. Sebastian was not crying or resisting after his freezing was done, and his four top front teeth were pulled fast and clean by gentle and very precise hands of the dentist. Yet watching it from up close and having to hold him down for this unpleasant treatment made me drop few silent tears I could not hold back: why do I have to witness my little boy suffer? My tears were not about the teeth, but about the bigger picture.

When I was little I was a very good dental patient thanks to my mother. She would explain that I will be exposed to pain, she never try to minimalise it, she would never say it would hurt a little, she would always say: "It will hurt a lot, be prepared, and you can handle it." I was never lied to, and surprised by pain and that is how I have learned to trust my mother and the dentist, and I was always calm. I can not do that for Sebastian. I can not explain him what will happen. I can not explain him the world. I can only watch him suffer.

Nobody has given me an honest warning what my motherhood will be about either. That also doesn't seem to be fair.

Monday, May 10, 2010

Ugly stools comebacks

Last few weeks Sebastian had extended belly and more irregular stools. After the stomach flu it worsened, and now he is taking antibiotics before his teeth extraction. We have to do it because I noticed large abscesses on his gums coming back again and again.. It happens because his teeth are loose and when bacteria gets under the gums it creates the inflammation. He puts many random objects in his mouth. So we take the antibiotics, and his stools went from bad to worse. Beside loose undigested mess I just noticed mucus and a little bit of blood even. And poor guy needs to go to the bathroom many times a day. And he stims intensely. It is nothing new. He had stools like that for years - that was our pre - GAPS diet era. Now at least I know better what to do.
So we will start next week from the beginning again helping his gut to heal with GAPS ntro.

Sunday, May 9, 2010

Mothers Day

On Friday Sebastian brought from school hand made card and big bouquet of paper flowers . My talented and thoughtful boy! I bet he had some hand on hand involvement in making them. I tried to make him do this three things at the same time:
1 - hold the flowers
2 - look at me
3 - smile for the picture.
He proved himself to be a typical male. He is much more confortable with doing just one thing at the time.

Saturday, May 8, 2010

Wind storm and Plum Tree

We went out for few hours.. When we came back home that is what we found:



My most favourite in the world tree, my best tree friend that made me smile every morning when I looked at it, my wild plum tree that blossomed so beautifully just few weeks ago, tree I planned to spend this summer sitting under in its shade, was brought to the ground by the wind storm.
The power was out too.
I assessed the situation and since the roots were not ripped out of the ground I tried to help the tree by cutting the branches that were hanging the lowest and prompting the it up a little. I will have a lot of work cleaning up and chopping the branches. I really want to save my tree.
Here is how it looks no:

Friday, May 7, 2010

All is well

There should be nothing more uplifting and inspiring for parent of autistic child than to meet a parent of a teenager and the teenager himself who was autistic and recovered. Well that is what happened to me yesterday. But it was not a positive experience. To the contrary, I was moved to the core of my being but in in the wrong way.

Sebastian last few days has awful pre-Gaps-like stools, and behaviours and intense stimiing follows through. The reason might be partly his stomach flu he went through lately I am not quite sure. When Sebastian stims very intensely he is not easy to watch for me. And we have met the mother and the boy in one of those moments. Sebastian was lying on the floor and mouthing and twirling plastic toy intensely, and relieving his tension by making noises difficult to describe and somewhat similar to those made by a puppy when you try to take away his toy. (It sound like real strong "mmmmm")

The other mother, a very well intentioned woman franticly attempted to help me be explaining existence of SCD diet and behavioural therapy. Well she assumed that I know and do little for Sebastian, otherwise he would be recovering like her son was. Her son by the way, was a very charming and intelligent ant tactful young men, with delicate sense of humour, any parent would be proud of him.

I instead of thanking politely, went on defensive and started explaining that Sebastian is on a diet more restrictive than SCD, and that he went through years of the therapy.
But what I felt inside was a rage. The truth is I know I have done all I could, but I feel I haven't done enough. What is the reason I got so upset.

We went home, and I was still fuming inside. Hours later I was sitting in my rocking chair with TV on but not really watching when Sebastian came over to climb up on my lap and gave me big hug complimented with brightest possible smile. It was his way of saying: "All is well mama, al is well"

Thursday, May 6, 2010

Sleepless night

Before GAPS diet we started last summer we went through years messy stinky stools, extended belly, many irregular sleepless nights - Sebastian often would sleep just three - four hours a night and had great difficulties falling asleep, and had many tantrums, hand and feet biting and aggressive outbursts - grabbing face and/or hair of his caretaker. All of those gradually went away. Incredibly. Sebastian calmed down. I started thinking - oh, may be he is just growing up.

He did not heal completely, and we have to stick to the diet and his stool sometimes just goes bad without a reason I am able to decipher. Last few days his belly become very extended again and yesterday he had several loose and stinky bowel movements, and he did not fall asleep till around two in the morning.

When he was roaming around after midnight I had unpleasant flashbacks from the past, and another confirmation that there is a definite link between behaviour, brain function and digestive system of our kids. Is anybody doing serious studies about it? I keep hearing about governments giving millions for trendy genetic studies done on autistic children. But does anybody heard about any disease that was cured genetically? I haven't. And if we were to wait for genetic causes and cures for all diseases, we would have to close hospitals and medical field for a time being. There would be no cure and known genetic cause for any of them including diabetes, heart disease, viral and bacterial infections.
Rats!
I grew a little frustrated and cynical over the years. Bother.

Tuesday, May 4, 2010

Autism, lilacks and dreams about future.

I found myself struggling with writing everyday something about our "everyday struggles with autism". First I thought I was just getting lazy. But now think it is something more than that. My attitude changed. I am not interested in struggle. Not any more. I want us to thrive. No matter what the circumstances.

I did everything I could to help Sebastian running myself worried, sick and ragged. I was getting in debt too. No matter what I did I have never done a right thing and I have never done enough. Good thing is that I have met wonderful people on my way, and it makes me hopeful and full of reverence to generosity of human spirit.

I do not want to scour internet for autism news, that are mostly tragic sad and heartbreaking. I do not want o even hear the word autism. I do not want to hear about another therapy that may be helps and I can not afford anyway. I am not interested in feeling guilty and inadequate and helpless. What is my plan? I am not quite sure yet. Better be something good.

I do everything I can to balance myself and feel better now.

Lilacs in our yard are blossoming spreading an intoxicating smell. I shot picture.

So in conclusion this is a post how lilacs help one mother feel better and even dream about good future.
In spite of the facts, history, and so called reality.
Let it be so.

Saturday, May 1, 2010

Deep thinker

My son is thoughts are very deep..
I wish one day he will be able to share them with me.