Update.

Pretending to buy stuff in a store.

As promised, an update for all of you who are curious about my little, already 7-uears old boy. Cos my, it’s been a long time since I wrote about Pelle in English (8 month!). So where should I begin? We had a wonderful summer holiday. We stayed at a campsite for two weeks and it amazed me how independent my boy gets. Biking on his on around the grounds, doing chores, keeping himself busy. What a difference with last year (2011) when we where at the same place. He hardly left my side. Unlike last year, he enjoyed the theater the animation team put up every night. Singing songs, doing sketches, telling yokes. He was there waiting for the bell to toll every day at a quarter to seven, announcing the activities. It was a great two weeks, and for the first time in all these years of raising him, it felt like a holiday for me, too.

Back home, we intensified our Dutch version of the Son-Rise program. Dutch meaning, among other things, that we don’t emphasize on being happy so much, as is the case with the American approach. I think it’s important for Pelle to learn about emotions and that they are all equally important in a human’s live. Off course I want him to be happy, but if he’s not, that’s also OK. I try to teach him how he can cope with anger, frustration, anxiety and so much more a person can feel. I try to be patient, embrace and reflect what he is feeling and if it’s necessary, talk with him about it. I’m very happy with Pelle, but I do have my moments of being grumpy and tired, and that’s OK, too. Most of the time I enjoy playing with him very, very much. It makes me so cheery.
After the summer we continued with three players. I felt so very fortunate as I could contract a male student, after quite a search. He was one of the guys from the animation team from the campsite and Pelle and he chase each other a lot, play tiger, running games and do more boy stuff. Mart is very expressive and loves to act funny. Lila stayed on, my trusted companion and the one with whom I discuss our goals and the way we try to accomplish them. She’s doing a lot to try to engage Pelle in drawing and other artistic expressions. Tamara also stayed. Pelle and she did a lot of board games and small role-plays.
Pelle's really learning to play like a kid, now. It's wonderful to see.
After the Christmas holidays his imagination started blossoming. What a huge reward for all of us. He is now enacting things he sees on the television or on You Tube. If you’re curious, take a look here on my Dutch blog. Although in black-and-with and with a bit trouble with our handy cam, you can see him pretending to be a reporter and doing the children’s news. It’s about a crocodile that died (by an ice spark). I am interviewed (and impersonating 2 characters) about the matter. Off course I’m glad, because I’m scared of the crock. He’s also doing two other items (about skating and the weather) and vocalizing the tunes.
We keep working on our goals, like playing together (flexibility, eye-contact and non-verbal expression), enjoying yourself (playing alone and trying to cope with delayed attention) and drawing (he’s not making much progress there, but we continue anyway). Later this year, we will start introducing play-dates as he still has minimal contact with other children.
At school he’s doing fine, with some aid of a student who comes twice a week for an hour to help him with his writing and to teach him how to do the tasks he is supposed to do on his own.
I am still loving him to bits. He’s my sweet, sweet, joyful and vivid boy and he is unfolding his potential in a wonderful way. And as I see how people are taken by him, I'm so proud to be his mom.

About the boy, the continuing story

Pretending to be a bus.

 I should have written this post much earlier. It’s the foreign language that’s holding me back, but I don’t want to postpone any more. So for those of you who know I’m running a Dutch Son-Rise program for Pelle, here’s an update. How’s our boy doing? Fantastic!
It's almost 2 years since I started playing in his sleeping room and boy, has he been blossoming ever since. We now have a team of 2 players and I hope to contract another one (a 20-years old boy) very soon. Pelle’s still in school, as the summerholidays run very late this year, but I already know he’s moving to the 4^th grade, along with his classmates. (Here in the Netherlands you start with 1^st grade when you are 4, and he will become 7 in July). He still has aid in school by a remedial teacher but also by a lovely little girl who sits next to him and helps him to get organized etc. He learned to read this year and to write, although his handwriting is still very wonky. But what’s more important for me is that he’s able to function in a class, with some adjustments, and hearing his teacher say she is so very proud of his achievements.
What’s also wonderful is that he is finally drawing. We set this as a goal, almost a year ago. And look what he did 2 weeks ago!

A drawing with little fish, a churchtower, a house, a mill, a car,
the sun & Pelle and 'vormen' (= shapes) in the corner.

In comparison, here's a drawing he made in Oktober. The assignment (at school) was: make a phantasy animal.

At this moment, our other goals are: learning to play together, learning role-play and learning to play alone. We now play things like memory and simple board games. And today for instance he said to me: ‘Now I’m a spitting fire like a dragon, mum” “It’s pretend” he reassured me and there he went, hissing away.

(For those of you who are more familiar with the details of Son-Rise, we also work on eye contact & non-verbal communication, verbal communication, interactive attention span and flexibility, but more implicit. I estimate him at being at stage 4 at most of the topics, with some exceptions you’ll read about below). 

The children in his class like him, as he is very sweet and cheery, but he hardly plays with other children and has no friends, yet. (He was invited for 2 birthday parties this year, though). So this month, we’ve been starting to introduce play-dates. I invite children to our home and play with both of them. After a while, I hold back and let them play together. What I see, is a boy who interacts very good when it comes to verbal communication, but who has to learn how to play. At this point, he’s simply lacking experience and skills like more advanced role play. He still has little imagination. But the children enjoy each others company and there are enough things Pelle can do like making a puzzle together or a little competition on the bike (Who will arrive first at the finish?) And as he has learned SO much these last years, I’m confident he will grow in this aspect, too. He sure likes children. He loves it when Mark and I read stories about toddlers and he likes watching programs for toddlers on TV. So mentally he’s still a bit young, for liking this when almost 7, but he laughs, while watching, and what a great marker that is for empathy.

So is he still autistic? By now, that word has lost most of its meaning to me. Sure my boy is not average, if there ever is such a child. He flaps with his hands, talks a lot, makes strange noises, talks a lot, wants to go to the church over and over again to see the doors and interior, wants to go to the mill over and over again, wants to go by the bus and the train every day if only this was possible,
talks A LOT ; - ) and wants our attention every minute of the day. (Hence our goal of playing alone, which is very hard for him but his efforts are also heartwarming). He’s unique and I love him SO MUCH. And I’m SO VERY VERY HAPPY he came into our live, I can hardly express it. So we go on, the both of us. Blossoming away.

Clothes to be.

Every now and then I indulge in buying some expensive fabric. Because it gives me so much pleasure to sew with and because I can compensate by also buying second-hand clothes, inexpensive fabric and by recycling.
So there I was, ordering on the internet in this huge German store. When I looked carefully at the receipt a day later I saw I made a mistake. In stead of brown owls I accidentally ordered pink ones. The fabric was already on it’s way.



When it arrived, I told Pelle I had other intentions, color wise. But he said it was no problem at all. “I like pink, mum”. And that’s true. Here’s a boy who has no awareness of social conventions and easily wears a button with Cinderella and Snow-white on them just because he likes it. I don’t think he even knows the meaning of words like ‘childish’, 'girly' and 'boring' which establish your position when you’re 6 years old. I think that’s the pearl of being mildly autistic. He does things his own way and his authenticity shines through it. I have always seen that. His soul is very visible. So to celebrate that, I am going to sew him a nice shirt. Pink owls. But he has to wait though, because first, I want to wrap him with up in warmth. A sweater and a pant to suit the weather. In the meantime, I can hardly wait to delve into those 2 knits, too.

Reassurance.

I don’t watch television that much. I’d rather sew, or do something else at night. But on Tuesday, there was a film I’d liked to see and it didn’t disappoint me. The title was simply Adam and it was a gentle story about a young man with Asperger’s syndrome who falls in love with his new neighbor. They get a relationship, but in the end he moves to California and she doesn’t.
I’m no expert in Asperger’s (I think Pelle has a different kind of autism) but I had the impression it was a rather realistic portrait. More sentimental and romantic than in the real world, but that’s where movies are for. It wasn’t over the top.

I don’t know what the future will hold for Pelle. Will he ever get a relationship? Have friends? I honestly don’t know. Am I worried? No. Not at all. Because the future is so very far away and because there are so many people here right now who love him and care for him. He is a sweet and charming boy and people like him. And I guess that will always be the case. There will always be people who care, like they do for the character in the movie. And that is a comforting thought.

Playing with my boy

Sorry for not writing so long. I’m busy playing with Pelle, organizing the program and doing promotion work for the Dutch foundation who introduced Son-Rise here in Holland. And I’m still volunteering for the Rent-a-Toy organization in our village and doing a lot for Pelle’s school (organizing a fund-raise for children in Africa, serving drinks tomorrow when they have their sports day etc.). I’m busy and happy.
If you want to see me play with Pelle, take a look at my Dutch blog, here. Mark recorded the start of our session, last Friday. Of course there’s a lot of talking going on in Dutch, but maybe you’d like to see our dynamics. Pelle starts by singing songs from a little booklet and asks me several times what the next song is. As I’m not allowed to sing, I show it to him (the song about a paper hat). You can also see me very briefly talking to Mark, who discovers that we only have 5 minutes of tape left in our Handycam. I tell him that that’s probably enough.

I had to cut the recordings in 3 pieces, because I’m not able to upload more than 100 MB on Blogger, but it’s all from one take. The next two pieces are here and here and you can see us while Pelle takes an attention in his mill and I tease him a bit while blowing and touching the ‘wieken’ (don’t know the English word). Next we play with his wooden blocks until he starts talking about swimming lessons and not daring to jump into the water. I contradict him by telling him he did just fine, the other day and showing him the jump he made.
We then start pretending we’re in the swimming pool, but unfortunately, that’s not on film.

I try to make as many eye-contact as I can, inviting him to look at me verbal (by asking) and non-verbal. I also try to express myself in a fun way. You can see how he reacts.
Our goals for the moment are to learn him how to do pretend-play and role-play and to invite him to draw (no example there). And to stimulate him to physically cross his arms, because he needs that to learn to write, next year.

If you like to see how he has progressed, I’d invite you to look at this film, which was shut in August last year. There’s so much more contact, flexibility and sharing now. And there still is so much fun. I love doing this and being with him.

Scenes from the playroom

I wanted to write about our Sonrise approach much earlier, because I want to share my experiences. But it had to wait until now, because only now I feel things are really shaping up.
Here’s a bit of our reality at this moment.
You can see us playing in Pelles bedroom almost every day, for half an hour or longer, until he wants to go downstairs (and after I tried to tease him into one more game).
I started low profile (after initially putting far too much pressure on the whole process), not every day, just as long as Pelle wanted it. But now we’re both much more accustomed to the new routine in our lives and we can delve in deeper. So the hours spend playing are longer and I’m planning to do it every day, except for Saturdays, because I now see so much benefits from this joyful way of being together.
Pelle is not a typical autistic kid in the sense that he lives in his own world. He will talk to you if you’re an adult and wants to connect with you by sharing his interests. He talks really well and sees you in the eye. People call him sweet, and he really is. He’s always joyful and smiling. But he does not play with other children or has many interactions with them. (He’s doing fine at school, his classmates just take him the way he is and I’m very grateful for that.).
My main goal is to learn him how to play and love it. To let him feel the fun and explore his possibilities. Learn him more skills, so he will be able to play with other children some day.
At the moment I’m practicing pretend play with him. Since he likes to be chased, I’m a policeman, wanting to lock him up, or a lion, wanting to eat him. Or I play with a puppet who wants to climb the towers he loves to build, or an old lady who opens the door when he comes to sing for SintMaarten (a Dutch feast on Thursday where the children walk with their lanterns and collect candy). Since I also would love to see him to play a game with cards (like memory) we do funny things with them. The apples, pears and other images on the game from the hungry caterpillar are devoured by us. Afterwards, we’re having a little belly ache.
So here we are, both learning. For me it's about setting goals and working with them while I tune into his world. I’m coming to grips with it more and more and it feels like I can now reap what I sowed the last couple of months. I can take our play one step further and introduce new elements.
I’m dreaming about dressing up and more elaborate role-play. Of him being really concentrated for a long time. Those days will come. Because one of the things I discovered is that my boy is a fast learner. I often have the feeling that I only have to touch his inner abilities and they are growing. Sometimes it feels like magic.
And I’m not the only wizard in our house. Every Friday, Christa comes to play with him. She’s an apprentice from a college nearby and is learning to become a player. It was lovely to see him curled up into her arms as they were reading a book, the other day. I’m so pleased she’s here to help us. I’m going to search for one more player, so Pelle has another different input. The fun has only just begun.

I leave you with two scenes from the diningtable. He's demonstating his foldingskills.

Like a flower

I followed a Dutch course, this weekend. Based upon the principles of Son-Rise, but with a Dutch twist to it. And as it goes in courses, you have to introduce yourself to the group. What to say? And then it came all naturally to me, and with great intensity. Pelle has opened up my world. Literally and spiritually. I feel it so strong and with great passion.
Everything I once thought would be ‘normal’, lost it’s meaning. Everything is possible. I really don’t mind if he is developing in another way. Because there are so many possibilities. He freed me of the thought that the only meaningful way of living is going to school, going to college, marry and raise a family. The world is bigger than that. And being alive is more. It’s about having your own place in the world. He taught me that setting boundaries is not useful at all. And I felt so free, truly free upon realizing that. And so grateful.
Now I can look at him without fear of the future, without wanting him to be different. Finally I can meet him soul to soul. And feel enlightened and full of love.
And now as I’m letting go of all my expectations he is changing in a pace I can not believe. He is starting to make little jokes. Such a pure, innocent humor. My mother asked him “Do you need to be washed? “. He said “yes, put me in the washingmachine, gran”. He is telling more about how he feels. “No I don’t want to sleep under the bed, because that’s a bit scary”. Is this the boy who didn’t even say “I” only a year ago? It’s so hard to believe. He still is hyperactive sometimes, but has calmed down in other ways. Like when we are in the woods, he holds my hands almost all the time. He never did that, because he was always running, when we where there. And I so love the touch of his small hands. But you know what? I’m even missing seeing him run so much. Oh boy, I so loved to see him run on his little legs. He was so fast. A classmate of him said to me once "Pelle's always in a hurry". Not anymore.

Last week he said he wanted to glue. You have never seen a mum run and grab the stuff faster than I did. I joined him and we had such good, relaxing times. Another dream comes true.

He learns to do pretend play. And so much more. He is blossoming, really blossoming. Like his mom.

Playing with Pelle

(These photo’s are made by Pelle. I’m always so surprised to see his pictures appear because he often takes them without me noticing him. It’s so nice and interesting to see his perspective).



I had some trouble getting started to play with Pelle in his room. Looking back on it, I realized I was putting way to much pressure on the whole process. I stressed myself to much, because wasn’t this THE ONLY REAL OPTION for Pelle to lose his autistic tendencies? Wasn’t I supposed to come up with all these plays, ideas, energy, enthusiasm, fun, amusement, expressiveness and so on, and so on?
And then in a dream I was advised by Bears, one of the founders of the son-rise program, to step back. I was agitated about that. Who? Me? The quiet, sub-assertive person who usually plays her role in the background? But it must have been important. Because the message stuck with me. So I dropped my load. In the playroom, Pelle has the lead, and I follow. And it makes me feel so relaxed! Because in stead of making up things, and thinking very hard, and having the feeling I need to do all kinds of things I’d rather not, I just go with his flow. And now playing with him is easy. My imagination just wells up. Like my energy and joy. We are having such good times!
And one of the other things I realized is that I still can be me. I can act true to my feelings. Sometimes I’m annoyed or grumpy. I can express my irritation when I’m busy in the house, or tired, and he keeps repeating the same questions over and over again. I still accept him the way he is, in my heart. I know he feels that.

So where are we now? Miles away from the depression I had last fall, after they told us that Pelle had a low IQ (65) and was probably best of in special daycare. I don’t believe autism = lifelong disability = being locked in a ridged world anymore. I am convinced now that Pelle will outgrow all his autistic traits. Really convinced. And he might even manage on his own. But I’d really love to help him and grow with him, too.

So here are the plans: playing with him in his bedroom every day, after school, as long as we like it. My goal for now: elaborating his playskills. He can play with some toys, like trains and cars, and the marble run. And he is starting to use his imagination, pretending to be a lion, or a tower. So I’m building on that. For this month, I’m planning to introduce cards and a dice and some role-play. This afternoon, I will show him some simple cards we can lay out on the floor and see how he will react. I will keep you posted.

Changing

There are all these small changes. Waving to Dad, when he sees him coming home. Answering questions like “What did you do at school today?” Saying things like “I’m sad because you go on a holiday, gran”. Talking to her on the phone, and not just telling her what he wants to tell, but reacting to the things she says. Like:
- "I can hear your clock, gran, why?”
- “It because you have such good ears, sweety”
- “But what if the lion eats my ears?”
It’s things like starting to smile while anwsering a question about our holiday:
“Did you sleep in the tent, Pelle?”
“Noooo, I slept in eh, eh …… a closet!”.
It’s things like holding my hand for a long, long time yesterday, when we walked in the woods.
It was this look in his eyes when I made a joke, the other week. That look that said: “mum, I understand you and it’s funny”.
My boy is connecting. And it feels SO GOOD.