Wednesday, February 25, 2009

Vocal stimming

Sebastian was a very chatty baby, and he was babbling a lot since he was three months old. I was expecting him to start talk early, because we are all talkers, and my younger sister was talking before she was one and mastered full language by the age of two.

I started to worry when Sebastian was 18 months, and still not talking. He was became very fond of walking around staring at fine print on toothpaste tube. He started "mouthing" everything a little later, and he does it to this day with a lot of enthusiasm and vigor to everything that is not edible. Food is quite a different matter and he gags easily on just the sight of spoon filled up with food.

Since the age of two when Sebastian uttered any sound, it would 95% of the time explode in full blown tantrum just a second later. And it is only since last summer that that behaviour has changed and become less frequent.

I was forced to develop the ability to mentally duck down and block his screams since it often is happening when I am performing some kind of task requiring my attention, like driving or shopping - it takes a lot of mental energy though.

I find myself surprised and delighted listening to new and sometimes quite loud sounds he makes now that do not become high pitched screams. He sounds sometimes as if he was telling himself a story. "What you are saying?" I ask, and he looks at me and stops, and it takes another while of silence until he starts again.

It is called vocal stimming but it is music to my ears.

Tuesday, February 24, 2009

Gambling

Yesterday I put Sebastian in the tub early - around six because he got dirty. He loves the water and stayed in there for about half an hour playing quietly with the cup and rubber toy. I took him out tucked in a big towel that had been warmed up in the dryer, and then put him on the bed. He lied down quietly and I covered him and he fell asleep around seven.

Now comes my dilemma and gambling time. Should I wake him up or let him sleep? When Sebastian falls asleep before 9pm he often wakes up in the middle of the night and stays up till 4 of 5am. It is exhausting! Sometimes he sleeps through the night though.
I decided to let him sleep.
I won!
He slept for more than eleven hours. I had to wake him up. I was then wandering if he was sick, and OK to go to school or not.
My anxieties never end.

Monday, February 23, 2009

Too much to do

I have a fantasy that I could multiply like microorganisms do. Split on two, and again, so there would be four of me. Each of those persons would be exact copy of me; easy to get along with, and willing to do what is necessary. Each would have a job and a half, but then maybe all things that need to be done around the house. One would take care of the house; dishes and laundry and floors and cooking, one would take care of Sebastian, one would go to work and would do taxes on time, one would do autism research, and reading and finish house renovations, and take courses.... Wait, there should be five of me.

Friday, February 20, 2009

Autism awareness campaign.

I keep thinking about how to take a simple message about autism and make it present on the street. Maybe large bumper stickers; maybe posters, lawn signs, flyers. I think we could use some of Obama's presidential campaign people for advice. Problem is, parents of autistic children are a very busy and difficult to organize bunch. I am a prime example of that.

Tuesday, February 17, 2009

My reflections on what happened at the party.

On Planet Sebastian, pain and /or frustration = aggression.
Sebastian is 5 years old. He has a long way to go and a lot to learn.

The birthday incident was contained and resolved by the family. The scratched ear was swabbed by disinfectant; the victim was comforted by his father, and offender was removed from the premises by his mother.

Sebastian is five years old. If Sebastian were fifteen the story probably would have had quite a different ending. There would be a 911 call. There would be police and ambulance, maybe even a stun gun. Eventually, Sebastian would have to be placed in some kind of institution where he would be prevented from injuring himself and others. He would be monitored and controlled, probably using tranquilizers. Sebastian is very strong for his age. He will most likely live for a long time. He will need decades of care. This will cost hundreds of thousands of dollars a year, adding up to millions of dollars over the course of his life time. There are currently thousands of kids like Sebastian not receiving adequate help, who, in five to ten years, will not be able to be cared for by their families any longer. The fact is that adequate IBI therapy administered now, when the children are young and most receptive to the treatment, could save taxpayers millions of dollars in long-term care costs a decade from now. This is part of what parents of autistic children are saying in their desperate rallys, letters and petitions asking the Canadian government for help. But who is listening?

Sunday, February 15, 2009

Birthday party

It was my brother's birthday, and we went on short notice. My brother's place is spacious and there is some room to run around for Sebastian, and that is good. His parties are never too crowded, and that is good too. I spent the first hour the way I usually do when we visit other people houses: running after Sebastian and removing from his hands objects he tries to chew on--remote controls, computer mice, phones, rubber gloves, plastic bags, toothpaste tubes, etc. Sebastian was jumping on beds and couches, turning the lights on and off, turning the water taps on, ripping the plastic from the windows, opening the fridge, taking his clothes off. Had it been a first year university crowd, he might have been the life of the party!

Then he got a bit more restless. While running past my 16 year old niece, he grabbed her long blond hair and pulled really hard. It took two people to free her. I was holding Sebastian's wrists and my sister-in-law was opening his fingers one by one. Everybody became a bit uneasy, especially my younger niece, and I was considering going home at that point. But Sebastian calmed down. New guests were just arriving whom I had not seen for years, so I wanted stay just a bit longer and reconnect.

Among people that just arrived was boy one year younger than Sebastian. Sweet and bright, he was sitting by his father, listening to the conversation. Just as he got up Sebastian launched at him, grabbed him by his hair and ears. We were all close, but since there was little warning, and I was not expecting it at all I was not able to prevent it. The boy got scratched and started to cry. So did Sebastian and we went home right then, accompanied by sounds of crying and apologies mixed together.

Sebastian attacked somebody his own age once before, over six months ago. It was as we were exiting the plane after an eight hour flight. I think his ears must of hurt after the landing. He grabbed the hair of a girl his height, in line in front of him. I was also taken by surprise at that time. He often grabs my hair during his tantrums, and I ended up cutting it really short, but going for a stranger is quite another matter. I will have to be much more careful with him in public from now on.

Tuesday, February 10, 2009

School visit

Yesterday, I visited Sebastian's school to observe his speech therapy. It is a small, private, efficiently run institution. The building is cozy and the air is filled with kid's and therapist's chatter. All the staff working there are fantastic. Dedicated, professional, friendly, smart, beautiful inside and out, they perform work incredibly difficult and taxing with ease and a smile. The enormity of the effort that is spent on every single child is difficult to exaggerate. The work and dedication of these workers changes lives. It has already changed our life. Sebastian is much happier and calmer and less aggressive than he was even half a year ago. He is more independent. He understand and is much more aware his surroundings. This reduces my stress and makes my life easier. I know that our future is going to be better because of what already has been accomplished.
I will never be able to say "Thank you" enough.

Monday, February 9, 2009

Cold

Last week it was Sebastian, this week it is me. This morning I would not get off the bed unless I absolutely had to. Poor Sebastian. If I knew how poorly he must of felt, I wouldn't have pushed him so hard last week, and I would let him stay at home for a couple of days longer. But since I do not know exactly how long he will be able to go to therapy, every day of it is precious.

Saturday, February 7, 2009

Hope.

Last Tuesday, when I came to pick up Sebastian, I was greeted by the door by very excited staff. They told me that Sebastian had done something amazing.

Sebastian is taught to use pictures to communicate. He has a binder with Velcro strips on the cover. He is given four pictures to choose from on the cover of the PECS binder; the rest of the pictures are stored inside. When the facilitator turned away to get something, Sebastian flipped through the pages of his PECS binder, picked the milk peg and handed it to her when she got back. He was not trained to do this yet. Surprised by such spontaneous request, the facilitator decided to reward it by bringing him some milk. When she was gone for a minute, Sebastian flipped through his binder again, picked another picture and walked up to another facilitator and handed it to him.

Sebastian self initiated communication twice. He showed for the first time that he understands the concept. It is hard to explain how exiting such event can be for a parent. It gives me hope.

In the picture, Sebastian has his binder and that look in his eyes--looking straight at the therapist, just a moment after he did something right. That gives me hope too.

Friday, February 6, 2009

Gluten Free Wieners


It was a real find for me. I found them at Costco, and always have a couple of packages in the freezer. They are also lactose free. I do not know if they are casein free. But since I put my boy on real goat milk he has had grow spurts like never before and he finally looks his age.

Tuesday, February 3, 2009

Gluten free pancakes

I am rather shy about sharing my experience and giving advice to other parents of autistic children, because everybody deals with their challenges differently. Mainstream medicine offers very little. Every parent is left to their own devices, intellect, education, intuition, beliefs. And therefore outcomes vary, and are very personal. What for some people is too much, for others is not nearly enough. And most people tend to have very strong feelings about the subject. The only other thing I have seen people as touchy about is religion. And we all know where that can take us...

So take it or leave it, here it is:
I do not like cooking. Sebastian does not like eating much or many different foods. Getting used to a gluten-free diet was quite an adjustment. But when he was hungry, and I had nothing else and needed some food quick I did this:

Take:
1 large egg or two small ones
1 shredded fresh apple or little cup of apple sauce from the store (100ml),
pinch of salt
some cinnamon,
tablespoon of oil
tablespoon or two of gluten-free flour( Rice or tapioca or potato or any other )
a little bit of xantam gum to keep it all together.


I mix it with fork in a large cup.
Fry in little pancakes in oil or coconut butter.

The batter can also be combined with leftover cereal, ground flax seeds, finely shredded carrots, pears or bananas instead of apples, etc.


Good luck!

Sunday, February 1, 2009

Fever


Sebastian woke up today in good spirits. Smiling and bubbly. He started the day by spreading love generously - giving hugs and pressing his face against mine. I wanted to stay in bed a little longer. I got back from work at 3 in the morning. I was tired and my entire body ached. This morning Sebastian was tireless and did not let me snooze for long. We got up. He ate scrambled eggs for breakfast, and was fine till noon. Then he become a bit cranky, and very soon started to cry a lot: real big tears. I was thinking that it was maybe due to his allergies. I was trying to console him - we both lay down and fell asleep. He woke up at four with a temperature of 39.5C. He fell asleep again and is sleeping still. We probably will not go to school tomorrow.