Thursday, January 29, 2009

More about tantrums, and what they do to a parent.

When Sebastian started having intense tantrums several times a day for years, it had a very profound effect on me. Frustration accumulated and turned irritation into anger. Anger and exhaustion grew into rage. Rage would explode and/or turn inwards into depression. Detachment is one of the coping mechanisms parents develop. One has to disassociate the behaviour from the child. But this is not what happened to me at first. What I did was dissociate myself from Sebastian. I was not a mother - I was a caretaker at best. Reluctant , resentful, desperate, and helpless. There was no pleasure, no rest, just guilt and torment from high pitched screams that started the moment he woke up. I did everything I could to help him; nothing worked. Helplessness was overwhelming. I became numb.

I think that that disassociation may be a biological survival mechanism hardwired into our brains. Perhaps from a biological standpoint it is not evolutionarily logical to invest time, effort and resources in a child that does not promise procreation. The desire to detach myself from this unconsolable, screaming child--an urge any honest parent will admit to having felt--became for me a chronic state with which I had to wrestle.

Sebastian's high pitched screaming was not the only source of stress. Finances, unhelpful doctors, the heartlessness and indifference of a SYSTEM that made it OK to make us wait years for therapy; unfinished home renovations; my own forgetfulness, fatigue and foggy brain, made it a struggle just to complete simple, daily tasks.

So far I have survived. I have met many amazing people who have helped us tremendously.

I am thankful for that.

Wednesday, January 28, 2009


I do not film Sebastian's outbursts. It is not anything that a parent wants to remember or share with other people.

This video was taken with my digital camera last summer. It is dark and grainy, and Sebastian is naked on it - he has some sensory issues, and when he can he is very quick to undress himself. Tantrums are caused by pain or frustration or fear. Often I have a hard time figuring out what is wrong or I am unable to fix the problem. So I let the tantrum run its course, trying my best to ignore him untill he calms down. Since he is non-verbal, I can only wonder if he is in pain - maybe from headache, maybe from tummy ache.

During those outbursts Sebastian bites his hands and his feet (self aggression). He also tries to grab the face or hair of the people near him (aggression). At Children's College every such incident during his IBI sessions is documented. In recent months the frequency of these has decreased significantly. Before his last assessment, charts with this data were submitted to my Regional Centre.

Sebastian's discharge report comments as folows:

"As well, a review of the hand/foot in mouth chart indicates a general decreasing trend in this behavour. A similar decreasing trend is also noted in the number of bites per session. Currently these behaviours were occurring at lower than the baseline levels. Their impact on Sebastian's learning is unknown."

Have I mentioned that person who signed this report has a psychology PhD? Do they take those away?

Tuesday, January 27, 2009

Development Chart

I have made that chart according to Sebastian first assessment when he was diagnosed, and according to discharge assessment. As it shows Sebastian has done a lot of progress in last 18 months. For people who like numbers he improved on average by 89% in 18 months. The most improved areas are his daily living skills and receptive language.

Here is a quote from the discharge assessment
The purpose of IBI is to change a child developmental trajectories. His development remains in the Low range of functioning for his age, indicating that IBI has not been effective in changing his rate of learning in the 18 months he had IBI.


(...) A plan of discharge from IBI needs to be discussed.

I think that the chart speaks for itself.

Click on the chart to enlarge.

Thursday, January 22, 2009

I am not a blogger

I find that with age my sense of self-importance diminishes as quickly as my good looks. Experience tells me that a lot of my decisions, although made to the best of my abilities at the time, were not good decisions at all. Also, my feelings that seemed to be so overwhelming, powerful and important at the time, are gone with the wind, and all but forgotten. I am not ashamed of anything I have done but I have many regrets. I would like to be able to do it all over again. I know I was mistaken so many times, that sharing and posting it out there for the world to see what I am going through, what I am thinking, and what new revelation comes my way seems to be a foolish and potentially very embarrassing exercise. And yet I think it is the way to go now. I am against the wall. It is not only about me anymore, and do not know what else to do.

Monday, January 19, 2009

Walking Circles

We went for a walk on Sunday. We did not get too far. The picture explains why.

Today we had a meeting at the Regional Centre where we were discussing Sebastian's transition from IBI (Intensive Behavioural Intervention) therapy to the public school system. Well-meaning, civilized ladies. Educated, responsible, loving mothers and wives, doing there jobs responsibly and with as much efficiency and grace as they can. Lending their abilities to make the system work. Helping things to be done the way they are to be done because THE SYSTEM dictates so. So they make the phone calls, schedule the meetings, write the reports, sign the discharge papers, wait for retirement to come. They sleep well. It is not up to them to think about where the train is going; they are happy enough to help it run.

Saturday, January 17, 2009

Day at home.

Today was a great day. I had a headache and crawled through the morning and afternoon. We were at home all day. It is now almost eight in the evening, and Sebastian had just one short tantrum today. Alleluia! He was cheerful all day, playing with his toys, running and jumping on the bed, giving a lot of hugs and kisses, looking at books, and watching a Dr Seuss dvd.

We did not go outside today. We will go for a long walk tomorrow.

Tuesday, January 13, 2009

The Weekend

Skin on top of Sebastian hands in places where he bites himseltf is thick. He is mellowing down lately, and his selfinjurous and aggressive behaviors has become shorter, less intense and less frequent. Although it is very rare, sometimes entire day can go without a tantrum.

Coming home on Friday afternoon I caught myself thinking that I am looking forward to a quiet weekend at home. But the weekend was difficult. Sebastian screamed, I did not know why. My sluggish mind tried to come with some kind of explanation; allergy, stomach ache... all in vain. I gave him some medication, I talk to him, I ignored his behaviours, I was helpless. It took hours. It is very stressful. And although I am a veteran by now, and it used to be much worse than it is, i can not get used to it, and it hits me hard.

Friday, January 9, 2009

Why it is not so good to be autistic in Ontario.

If my son had a split lip, the medicare would pay for his operation to make his speech and life better, but because it is his brain that is disfigured and not his face, he is not covered by medicare and he was allowed to double his age waiting for province funding for therapy.

If my son had a disfigured limb the medicare would pay for his treatment and prosthesis and professional physiotherapist, but because it is his central nervous system and social function and ability to learn by mimicking that is damaged he is send to off to regular school were autism therapists are nor even allowed.

If 1 out of every 92 of 2 years old boys fallen victim to polio epidemic the entire health system would be in state of high alert, but because autism is not airborne as far as we know so far nobody cares. Blame bad genes and let their parents worry.

Do I sound a bit bitter?

Thursday, January 8, 2009

Discharge papers.

I think some people might be interested how it is done. So have decided to post Sebastian discharge document for other parents to have a look at and get ready for. All I have to say is that Sebastian has made more progress in last eight months that he made in last four years. It was not enough to keep him in the therapy.

It has been heart breaking for me to watch my boy functioning on the level of one year old or lower on his second, third, fourth and fiveh birthday. I was doing everything I could, and nothing seemed to make much difference. And now when he is starting to understand more, have amazingly better eye contact, when he finally masters basic living skills after months of hard work and when most importantly his tantrums and self aggression goes significantly down - he is being cut off. I am being explained that regular school will be a better place for him.

The person who told me that has a PhD before her name. She is a highly trained individual. I wander; did her training include some basic ethic theory? I just wander.