18 January 2002
It is Friday afternoon. I have just come back home from running an intense workshop. I am tired and also getting a fever. I alone with Sascha and our three year old sister. My wife is off to work. Sascha wants pancakes:
- I want to have some pancakes, says Sascha and looks at me.
- I am sorry Sascha, I am too tired, it will have to wait until tomorrow, I answer
- I can make some pancakes myself, says Sascha and keeps looking at me. There is an unmistakable question in his way of asking.
- No, Sascha, you can't do yourself yet, I answer. (Not, the most creative answer, I know)
- We can do it together, continues Sascha persistently with a charming smile. This persistence is all new.
The inventiveness at looking for a solution and the persistence sticking with it is something we could not have imagined possible two months ago. My wife has worked intensely in the Son-Rise playroom with imagination for the last month.
Of course he got me. On top of it all Sascha is a very present boy, like a Buddha. His love is totally transparent. As I get up from my chair I think of what I can ask of him to do. I ask him to look up page 127 in the cookery book. He finds it with a little help. I ask him to read the recipe out load. He does this without help. He helps me bring everything out. He asks to make sure there is no gluten in the flour. He helps me mix everything together. Within 15 minutes I find myself cranking out loads of the tiny two and half inch pancakes which he and his sister loves.
26 January 2002
Finally an update. Sascha has progressed - a lot.
The six months have been very intense, hence no updates. We have done most of the Son-Rise work ourselves with my wife doing the greater part. During this time progress has been made so fast it is difficult to keep up:
A few days ago an "old" volunteer came to visit. She worked with Sascha for a few months a year ago. She is a Montessori pre school teacher. She was amazed at how much he had developed, especially language and interaction. I asked what she from her experience with typical children saw that there was left to work on. She said two things:
Then she added: "Lovingly clumsy. He is so amazingly filled with love."
His language is difficult to describe. In many ways he clearly has the understanding of a seven year old although he expresses himself more like a four year old. Maybe it is just a reflection of a language difficulty in combination with little experience of interaction resulting in very simple language.
PS. We have got local government money to employ assistants. We are very happy!
23 February 2002
Today our local paper published a very nice article about our Son-Rise program. Sascha helped the photographer and took a few pictures of his mother, one of which was published in the newspaper. I simply called up the paper and said that we have a story that might be interesting.
Also we have now employed four wonderful assistants for our local government money. It is very, very exciting! They are: Clara, Lisa, Aura and Veronica. All girls age 20-25, all students. We have recruited them very carefully. Among the things we did was to collect everyone interested, 13 people in all, for a meeting and tell them in detail what doing Son-Rise with Sascha would involve:
- Sascha might want to send you out of the room saying he does not like you.
- We will be giving you video feedback.
- We may be asking deep probing questions about your inner attitudes and if necessary ask you to make new choices.
- You will get a trial of four weeks to see if you move on feedback.
We even exaggerated the negatives somewhat to make sure to find people who were really motivated.
Then we asked who were still interested: Everyone was! Finally we chose a few people from their written applications for an interview. The ones we have chosen are very motivated and can do between 6-15 hours a week each! The four of them will fill the 45 hours a week we have been given. We feel very, very good about them. If you have read the earlier entries you understand that this is nothing less than a positive revolution in our lives.
We introduce the new assistants to Sascha very gently. The first time we let them be with Sascha in the room for 15 minutes only. Beforehand we have given them some basic guidelines about joining, loving attitude, having fun and not to fall in the trap of trying to create connection by asking a whole lot of questions. We tape their first 3-4 sessions on video and look at them afterwards high-lighting what works and what needs to be changed. Today, three of our new assistants have been in the room with Sascha. It is not easy and we realize that the training and ongoing feedback that we are giving them is absolutely essential. Two of them seem to have got through the first hurdle, however, and we believe all four will soon be very useful.
Sascha is doing fine although he is having a bit of a tough time with so many new people. One can really see how hard it is for him to connect to people, even with all the softness provided by the Son-Rise setup and attitude.
24 February 2002
Today we had the first team meeting with our four assistants. One of our former volunteers, Carina, came to help be with Sascha during the meeting. When the meeting was over, Sascha came in, surprised to see all his assistants in one room. He said hello to each of them and then went to take a bath. I went to him. From the bath Sascha said he wanted "all the people" (meaning the assistants) to come to him in the bathroom. They all came and squashed themselves in to our tiny bathroom. They all smiled, Sascha looked at them and said their names with his adorable presence. It was like a holy moment. Sascha clearly knew that a new stage in his life was to take off.
9 March 2002
Today we have the first of at least two one-day workshops with our assistants. We have talked about attitude and practised joining, enthusiasm, eye-contact, inspiring growth and other essential concepts that make a Son-rise program a Son-Rise program. We had a great day!
We have slowed down the introduction of our assistants somewhat. Sascha has regressed a bit, obviously being overwhelmed, even by the slow pace in which our assistants have started to work with him. He is clearly more exclusive and repetitous and has gone back to old activities. There is quite a difference actually from when we ran the program ourselves and Sascha was really on top of it a month ago. For two reasons we are not overly concerned: 1. Our assistants are really wonderful and quickly grasp our feedback. They are doing the right thing. 2. We have seen him regress before and he has always moved through it.
Still many things are working. Sascha's verbal skills continue to expand, although more slowly the last month. He is now rock solid on first person pronouns. We have not heard a mistake in that area for weeks or even months.
Sascha reads well now. With few problems he reads his sisters books, the kind of books that are read to 3-4 year olds. Also he is getting quite good at drawing and simple maths, addition and subtraction.
Yesterday, he impressed me greatly with his imagination. It was outside the room, just before going to bed. We were playing with a riddle from a famous Swedish comedian which Sascha loves. It is about a character called Fingal Olsson. No one knows what he looks like, however. So with the ambition to practise his imagination, I asked Sascha, what do you think he looks like? Within minutes he came up with this impressive physical description: "Fingal Olsson has a striped sweater and a moustache. He is bald with some pink hair on the sides. He has blues jeans, black shoes, glasses, striped socks and a green hat.
Those who are new to this page can note that autistic children typically have no imagination. Sascha certainly had none two years ago, not even a year ago. This is all the result of our work in the Son-Rise room.
In the midst of it all he has also learned to tie his shoelaces, although it requires some encouragement for him to actually do it.
2 April 2002
Sascha is slowly coming back. Since a week ago he seems to have regained his joy and is communicative most of the time in the room. Obviously he now feels comfortable with his assistants. He tells them that he loves them and has great fun with them. They have all learned how to join him and have the three Son-Rise E's (energy, excitement and enthusiasm). We continuously video film the assistants and give feedback 1-2 times a week.
Integrating our four assistants has taken longer than we anticipated. Clearly, we have top-notch, wonderful and motivated people. They have been very responsive to our feedback and have learned very quickly. Still, for Sascha this has clearly been a big step and it has taken him a little over a month to integrate the new situation.
Sascha is now in the Son-Rise playroom with one of us parents or an assistant 6-10 hours a day 7 days a week. Never before have we managed to give him this intensity. Obviously, it does him great as the following breakthrough shows.
Last week he was in the room for 10.5 hours two days in a row, from 8.00-18.30 (8.00 am to 6.30 pm). He typically goes to bed at 20.30 (8.30 pm). Both these evenings he went to sleep all by himself. This has never before in his entire life happenend two nights in a row! We have always had to lie next to him for 45-120 minutes until he went to sleep. In the last months we have tried to leave after 30-40 minutes, sometimes it has worked, but often he comes out of the bedroom saying: "I don't want to be on my own". It seems that after 10.5 hours in the room he is satisfied and OK with being on his own. We guess that he doesn't feel alone, but rather filled with all the interactive experiences of the day.
When we say he is in the playroom for 10.5 hours we mean exactly that. He is in the room continuously for 10.5 hours and only goes out to go to the toilet. Typcially I start out in the room at 8.00 o'clock inspiring him to get dressed, eat breakfast and do some Son-Rise work. Then his mother takes over and works with him until 12.30. At 12.30 an assistant takes over bringing Sascha's lunch into the room. At 14.30 (2.30 pm) the next assistant takes over until 16.30 (4.30 pm) when the last assistant takes over until the end at 18.30 (6.30 pm). The last assistant also gives him dinner in the room.
When he comes out of the room his 3 year old sister is delighted to play with him. It is not much interactive play but they can now be together playing with the same toys, clearly mutually enjoying each others presence. This has been happening regularly for the last three months now. His sister’s love for her knows no limits. If she gets a plate of raisins, she wants to bring Sascha a plate as well. If she takes a bath, she wants Sascha to join her. Sascha now feels very safe with his sister. The evenings when he went to sleep by himself, we found him close to his sister.
21 June 2002
Today is what in Sweden is called Midsummer Eve. It is a Friday close to June 21, the longest day of the year. Where we live the sun is up until ten o'clock in the evening. There are traditional festivities this day with dance around the Maypole. We have always gone with Sascha to these festivities.
Today is also a special day in an other way. Tomorrow, we are going to travel with Sascha to the USA, to The Option Institute were Son-Rise professionals will work with Sascha and us parents for an intensive week. His sister will stay with her Grandma and Grandpa. It is a very long trip involving staying overnight in New York City, before travelling to The Option Institute in Massachusetts. We have no idea as how to Sascha will react to the travel. All we know is that being two parents with him, we are confident we will manage any situation.
We have talked to Sascha a lot about the trip. He knows we are going to North America. He knows that people in North America talk American English, as opposed to British English which he is more used to. He knows that we are going to fly in an air plane for a long time. He knows we are going to stay overnight in New York City with all the high buildings. He knows we are going to rent a car and drive to The Option Institute. He knows that we are going to live in a flat there were their is a playroom (a Son-Rise playroom, of course) and that lots of fun people are going to come and play with him and talk English. Finally, we have tried to explain to him that we have to stay in line for many long queues when getting on and off the air plane.
Back to today. What can be said about today's festivities? Well, Sascha has participated more than ever. Previous years, Sascha has mostly run around and looked at people dancing. This year he actually participated and behaved pretty socially. It has been the most fun Midsummer ever with Sascha.
A magic evening!
The last few days have been hard because Sascha has seemed very out of it. Today we had a video consultation from the Son-Rise Institute which clarified a number of things.
Then in the evening three wonderful things happened. Sascha had been in the room most of the day. In the evening both he and his sister wanted to go out, although it is cold there is still spring feeling in the air.
I went out to them a few minutes later. I found Sascha walking around holding his sisters hand! Sascha then suggested himself that him and me was going to play police and theif. He was going to be the theif and I should chase him. This is the second time ever (the other time two days ago) he has himself suggested a game he invented himself. I chased him for some time and then caught him. "What did you steal", I asked. "Some carrots from a tree", Sascha answered after thinking about it a moment. This was totally his own imaginative invention. His mother told me that the other day he had suggested to his sister, that they play train together.
We came in and had supper. There was paper and a pen lying on the windowsill. Suddenly Sascha took it and started drawing (see photograph). His has never, ever spontaneously drawed before. We have always had to give him lots of encouragement. Now he drew, figures, shapes, a house and his name on several sheets of paper. We parents looked at one another and whispered: "Magic is happening".
After some time both children went up to the second floor. I heard Sascha talk about a children's book that his sister likes. I saw the possibility. I ran up and asked Sascha if he could not read that book for his sister. He did! I found the book, asked him to sit in the sofa and suggested to his sister so sit next to him. Like it was the most natural thing in the world, Sascha read the little book for her. We were so happy!
28 July 2002
We have returned from two weeks in our summer paradise of the island of Gotland in the Baltic Sea.
This time Sascha found a friend and took some small steps to play together. Sascha's friend took most of the initiatives and Sascha went along. Sascha clearly enjoyed being with his friend and they did spend some mutually enjoyable time together.
We had a very interesting time introducing a bicycle to Sascha. After only a little practise he could hold his balance and cycle on his own some 10-15 metres (30-50 feet). But having the motoric ability did not mean that he had the motivation, we soon learned. He only wanted to cycle when I ran after holding the cycle.
The Son-Rise Intensive was just as great as we imagined. We came home Sunday and we still have not digested everything. The insights and what we learned will get us going for a long time. We feel very inspired and empowered plus getting lots of useful information and feedback.
The teaching was tailored to our needs. The people working with Sascha were great. By watching and talking to them we got many new ideas for creating activities in the room. We also got some very clear suggestions on what to focus on in our work with Sascha.
Sascha seemed a little uncomfortable the first days and was more by himself than usual. Not much to say about considering his challenges and the fact that he had to talk his second language, English rather than Swedish. We had chosen not to bring a translator and Sascha's English proved to be good enough. He got more comfortable as the week went on. Coming home he has showed how much he liked being there as the following conversation from our playroom yesterday reveals:
Sascha's mum had been going over the calendar in the playroom to show Sascha how long we have been away in the States. Later they are running around in the playroom and Sascha suddenly starts this conversation:
- "I want to go back to America another June", he says.
- "Do you want to go to New York?" asks Sascha's mum.
- "No, to The Option Institute", answers Sascha.
- "Why do you want to go to The Option Institute?" Sascha's mum asks.
- "To play with all the people", answers Sascha.
For Sascha's communication, this means he absolutely loved it!
After a few days at home. Sascha has fewer exclusive moments and his verbal communication has a more fluent quality than ever, Also, his body language seems to be showing a clearly more confidant Sascha.
The most valuable thing we learnt was a deeper understanding about joining - which is what we do when Sascha is not easily contactable - and why it is crucial in the development of your child. We also learnt more on giving feedback to our assistants.
20 August 2002
Sascha talks to me on the telephone, a real conversation for the first time.
I am on my way north to the middle of Sweden, a three hour train ride. I call home on my mobilephone. Sascha wants to talk. He asks where I am, which kind of train I am on. There is an exchange of 4-5 questions and answers. This is a new achievement that has never happened before.
29 August 2002
Sascha today said to his sister, "I like you". We are so happy!
After being able to give Sascha 10 hours a day in the room during August, we see how beneficial this is. Now the school term is starting and our assistants have to spend more time with their studies. Clearly our three assistants is not enough to cover the time in the room that Sascha needs. We decide to try and find 2-3 more assistants. Our municipality will help us with and ad. We put up posters everywhere in town as usual.
2 October 2002
Today I have sat with a person at our local municipality interviewing three new prospective assistants. Finding them was not as easy as before. We do really hope this is going to work out well.
5 November 2002
Today is Sascha's 8th birthday. He refuses however to be eight and insists that he is seven years old. He says he does not want to grow up and be a grown-up. We respect his wishes.
Two of our new assistants are still with us. We now have five assistants: Johanna and Malin, who have managed their first intense month of training, as well as Clara, Lisa and Veronica who have now been with us for nearly nine months.
12 November 2002
Here is summary of our achievements with Sascha since this summer:
When Sascha chooses to look in our eyes, his eye contact is at times 100% present. He is enormously charming, with a gleam in his eyes and a smile.
He totally masters the concept of week days and week-end. He also comprehends different times of the day. And the marvellous thing is that he can wait until the appointed time to do something he really wants to do. This understanding gives him a feeling of control over his life that definitely helps him to feel calmer. We started playing around with weeks and days of the week 1 1/2 years ago. It's really good to note how long it can take to learn something. Most of us would have given up long before.
His got really good at reading Swedish and even sits by himself and reads the text in a picture book. He can even read some English.
He goes to sleep faster. Often, it only 30 minutes now compared to 2-3 hours just a year ago. I took some small steps that led up to this change. I sat up in bed next to him, then weeks later on the floor close to the bed, then outside the bedroom door. Some days it worked better than others. Nothing goes in a straight line. Another big step is that he started to enjoy sitting in the sofa outside our bedroom and read by himself. This meant that I could start getting his sister to sleep by herself when Daddy is out working. Before he went through a stage of not wanting to be on his own outside to bedroom if Daddy wasn't home.
When outside the room he goes to the toilet to pooh by his own initiative. Before I had to keep an eye on him and catch him in the right moment to get him to the toilet to pooh. I could see or hear on his voice that he needed to pooh. Please note that we have not formally "trained" him to do this. It can come by itself as we have focused on training him in communication.
Sascha can now formulate a question. We've been playing a lot with questions which, why, how, when, where, what etc... This is a prestep to having him ask us personal questions and awaken an interest for people and their world. It was actually the people at The Option Institute who suggested that we focus on this. I noticed that he had difficulty formulating correct questions when given just the first word like why. So I invented a game for him to practise this. I photocopied or drew his favourite figures like Postman Pat, Mulle Meck, Pingu, Thomas the Tank Engine and put up the first word of a question like: "Why". Then I asked Sascha to invent a question starting with "Why" and motivated him by promising to tell him a magical story as an answer to his question. He just loved that game and I think that we did it every day for 2 weeks. Now we've moved on to another variety of the same game with pictures of Snowwhite and the seven dwarfs. Our assistant Veronica did a similar game with her own set of rules. Clara invented a new way of having him find out which sentence ending fitted with which beginning. So his got the questions game from all sorts of different angles.
Now he tells us when he likes something or thinks a game is fun. Today I was watching Clara and him doing a Bamse game (a Swedish childrens game). When they were done he said: This was fun with a joyful voice. Some time ago I explained to Sascha that if he wanted things to happen again he needed to tell me that he enjoyed them or liked them otherwise I wouldn't know that he might like to do it again. In the room we also started telling him that we enjoyed playing with him. Recently we end our sessions telling him which thing we enjoyed the most and ask him what he enjoyed the most. He always answers with something that he has enjoyed!
During part of July and most of August Sascha got to be in his room 10 hours every day of the week. We noticed that he did really well. When we came back from our vacation on Gotland we told Sascha that we didn't want him to use the computer any more when outside the room. We gave him good notice. It was surprisingly easy. He did ask once why and we explained that we wanted him to have all his fun with the people who came to play with him. Now a real shift has happened with the computer which he used to love before being with anybody. Recently we have let him play with the computer because we needed a baby sitter during our assistant meetings. He played for a moment and then left it asking for someone to play with in his room! People have become more fun to him!
He now dives head first into the water at the swimming pool. One year ago we started going to swimming classes and then he didn't want anything above his neck line to get wet. That is so thrilling. Every time he does his little dolphin dive instead of following the teachers instructions, I let him do it and I watch with a singing heart. I would actually like to shout out to the whole world: Look his diving with his head first and look how much he enjoys that new found freedom! But we do live in a civilized society and I'm anyway a loud enough Mum in that group!
17 December 2002
A friend of us called. We have not met him for some time but he knows about our Son-Rise programme. He said that he now had the financial means to donate some money to a worthy cause. He told me about all the ideas he had about such worthy causes around the world. Then he had started to think that maybe there was someone in Sweden or even someone he knew who was in need of financial support. Although the Son-Rise Institute gave us a generous scholarship, for which we are very grateful, the cost of doing the Intensive workshop with Sascha in the US this summer was at the brink of what we could afford. Our friend found this out, through coincidence.
Today our friend called us and said he wanted to donate a sum of money in support of our Son-Rise program. We are very, very grateful and thank our friend from all our hearts. The money came at precisely the right time. The feeling of support gives us tears. Thank you!
27 December 2002
Sascha's sister is having an earache. She is crying. Usually Sascha get very irritated whenever his sister cries. He holds his ears, screams back his high pitched sound and runs out of the room or demands that his sister leaves.
This time turned out to be different. His sister is crying in the kitchen with mum and dad. Sascha is in the living room. Suddenly Sascha comes in the kitchen and asks calmly: "Why is she crying?"
We celebrate him, of course, and tell him: "What a brilliant question, Sascha!" This is the first time he has given a clear verbal expression of empathy and interest in how others are feeling