Thursday, May 28, 2009

Busy, busy, busy.

I am very busy. I have much more things to do than I a able to complete or concentrate on. At the same time my mind and body refuses to speed up. I am not afraid anymore. I can not mobilize myself by anger. But I do not feel very inspired either. Where am I going I do not know. I wish I could stop treading water and step from survival mode to quiet but inspired exuberance.

Tuesday, May 26, 2009

More appeal letters.


Here is answer to my previous appeal letter.
And here is my answer to it, I delivered yesterday personally.

Sunday, May 24, 2009

Tooth Ferry

Sebastian lost his first baby tooth today... My baby becomes a big boy. He did not understand what happened. I explained it to him anyways. We are expecting the Tooth Ferry visit tonight.

Thursday, May 21, 2009

Winter weather

The weather is great lately. It could not be brighter or nicer with more comfortable temperature. And yet the way I feel inside is not in unison with the weather we all enjoy. I am in my usual winter mood. It means pushing days through flue like fatigue, headaches, a little congestion, body filled up with little aches, swollen feet, feeling a bit down , bit overwhelmed, fogy brain, difficulties concentrating, forgetting things, leaving a lot of mess behind. Simple tasks like cooking Sebastian lunch seem to require almost heroic effort. Some days are better some days are worse, but mostly things stay the same.

It makes me think that may be there is something wrong. I have been really good and not eating junk lately, and yet I feel weak and tired like if I was going through another cold, another flu season. I scheduled doctor appointment. I am going to ask for every possible test. What makes me skeptical though is that when I went there last summer just before my central nervous system was overwhelmed by mysterious virus - I was complaining about some neurological symptoms - they send me home. I felt a reassured and did not realize that there was something seriously wrong with me. I had a headache - little bigger than usual, I needed to sleep and rest longer, I was forgetful just a bit more, I did not clean up after Sebastian made a mess, I was going to do it just a little later. Making him something to eat was a big chore - I was feeling just a little worse than usual, I was more lazy that usual - that is all. Nothing out of ordinary. When my neighbor Maureen came to check up on me I felt embarrassed; why is she coming when my house is such a mess?

My house is always a mess though. I did not make any sense when I was talking to her, and she saved my life calling my friend. Ambulance took me to hospital and I spend there six days coming back to my senses. I hardly remember going through spinal tap. I do not remember well going to hospital in ambulance, and entire conversations I had with my friends (according to them). It is a strangely frustrating feeling when nurses few times a day are asking you what is your name, if you know where you are, and what day is it.

That experience taught me not to take for granted, or identify myself with my cognitive abilities, intelligence, or intellect. It also make me question more and never be too sure of my own ability of reasoning and assessing my own circumstances. that is why when the weather outside is so beautiful and I still feel inside like winter I look for help.

Wednesday, May 20, 2009

Gate - after picture.

This is our magnificently fixed up gate. My brother deserves every praise. He has very good technical ability is very precise and can to fix almost everything. The gate was in dear need of repair for over a year now, and it is big relieve for me to know that it is safe now.

Gate

On Monday my very talented brother fixed our gate. I was helping a little. It took us all day, but the weather was great and end result is safe yard for Sebastian with the gate that is not held by slide and trunk of old christmas tree.



This is sad before picture.










I do not have good after picture now - it is coming soon.

Supporting Carly

Saturday, May 16, 2009

Allergies again.

Yesterday evening Sebastian's allergy medication I gave him in the morning must have worn off, as he was screaming, biting his hands and trying to pull my hair in the evening before the new dose started to work. He was letting me know that he was in pain. It must have been quite significant pain too, because I have seen him not even flinch after a big fall, and behave normally when his eyes look red and puffy like plums - he has quite high pain threshold.

I have a child who can not express his discomfort, pain, frustration or anxiety other than by aggression and self-injury. I can not explain to him what is going on, what is going to happen, that he is taking medication and that pain will go away soon. I can not reassure him other than by a big hug (in spite of him pulling my hair at the same time). In moments like this he seeks my presence, and screams in my face his pain and his confusion. Now it happens less frequently, and I have more patience and strength to take it. Just last year, it was an every day occurrence and could last for hours. I was at my wit's end.

Things are much better now.

(After writing this post I reflected on it briefly - Isn't aggression and self-injury how a lot of people react to pain and suffering? Physical and also psychological suffering for an extended period may cause people to cope by becoming self medicating addicts, becoming suicidal, abusive, or exploding and "going postal". These are all forms of self-aggression or aggression. So what Sebastian is doing is just smaller a scale typical reaction to a painful situation he has no understanding or control over.)

Friday, May 15, 2009

Fence

Our fence fell down over the winter and is now held up only by logs on the one side and Sebastian's slide on the other. I called the city but Residential Rehabilitation Assistance Program - RRAP for Persons with Disabilities does not cover fences. Not having a secure fence is a major safety risk for Sebastian, so I employed the free expertise of my brother, and we attempted to fix the fence using tools rented from Home Depot last Saturday.

Here is the "before" picture, which does not show that the gate is completely detached from its very wobbly post.

Wednesday, May 13, 2009

Tree pollen

I feel a bit flustered today.
Sebastian had another allergy attack during a walk at school. He was OK all evening but fell asleep crying, his eyes red and puffy. I was trying to put some silver drops in his eyes to prevent infection. It was not easy. I had to use all my strength. I felt like I was hurting him. And I do that a lot. I tried to help his chronic running nose with nasal sprays, and cream - not fun. The last two days he refused the liquid medication he was taking so far without a problem. Cod liver oil and liquid vitamins will become impossible to take from now on. So I had to force some antihistamine on him too. Even taking food in is hard unless he is completely starving, because he gags often, even just looking at the spoon.

I stopped painful B12 shots a long time ago. I am not going to do anything that is not absolutely necessary.

I am tired of it. It is so hard to get supplements into him, and according to my experience, except for probiotics, they do not make much difference anyways.

Is there a country without tree and grass pollen and without autism we could go to?

Monday, May 11, 2009

Short update

Sebastian has the first loose tooth. I was not the first person to notice. Helen was.

A lot is happening lately. On Thursday there was a Sebastian's school entry meeting. Eight people, very professional ladies except of me, discussing about how to put a square peg into a round whole. Does not make sense and is very expensive but that is how the system works. On Friday Sebastian had nasty allergies and I was working passing food on prom night, on Saturday my brother and I were fixing the fence that is falling badly since winter. I am trying to gather my thoughts since Sunday morning. Unsuccessfully. Hence the glib entry.

The weather is great. I could have it like that all year.

Tuesday, May 5, 2009

One penny.


According to Ontario Fact Sheet, the population of Ontario is 12,928,996. So if every person in Ontario gave one penny there would be enough money for two years of therapy for Sebastian.

Monday, May 4, 2009

Little doggie




Yesterday Sebastian had a lot of fun on the farm with the furry ball of energy, the little Boston Terrier, Lois. It was the perfect day for being outside. Our friend took those pictures with his cell phone. Thank you Simon!

Friday, May 1, 2009

Three inches.


Sebastian grew about three inches since last year. I think it is from drinking a lot of goat's milk.