Relocating to a new site

Friends, I'm closing shop on this blog and moving over to Cecily. Mostly.

You'll find all the entries and new ones in a blog called Autism. Mostly. on the site.

Thanks for following the adventures of Bright Eyes. He starts school tomorrow (aaggh!), so I'll be keeping interested readers posted on the new site.

Ciao!

The new place

We are settled into our new place, and Bright Eyes loves it. In fact, he has had a remarkable transition. He was so well prepared for moving here that it hardly even registered as a blip. He hasn't asked to go home once. Even sharing a room (albeit with a partition) with his brother has been nothing like the trauma I thought it might be. I am extremely thankful.

I have had the privilege of spending the last two days with him alone while the other kids went to school and preschool and we did a whole lot of RDI - probably the best we've ever done. It was great to have nothing else to do, and plenty of time to wait for him to participate.

The next BIG thing is school next week. He's going three days, for two hours each day. I'm nervous. My daughter is also nervous of how he'll be received. I'm hopeful it will be a positive experience for him. I'd appreciate any prayers you want to offer up for him...

Love it love it love it

I wrote in this post about how I thought brain gym was really helping Bright Eyes.

I still think it is, but I got into 'trouble' (not really) from my consultant who said I am selling myself short and really I got him to the place where he was able to even cope with going into the brain gym room.

Yeah, alright, I'll take some credit. Hubby and I have both worked really hard with him for two years. But it wouldn't have been possible without the wonderful RDI program, and without our wonderful consultant. This truly is an amazing program and our consultant has become more than a professional - she's a friend now.

So yeah, if you're wondering if RDI will 'work', it will. What did that old ad say? "It won't heppen overnight but it will heppen."

Stage 5 here we come

I haven't written here for about a month. So much has happened.

Firstly, our funding appears to be secure until he is seven, thanks to our consultant and her clever reading of the appropriate documents. Yay and thanks.

Secondly, he has completed Stage 4 of RDI. Probably that means the most to me - I like ticking things off lists, and getting to a whole new stage makes me feel happy. We had a look at the 20 'Foundations' of Stage 5 today and we're confident he has those except for two, so that's good too. Once we've moved and settled in, we'll start working on the next objectives.

Thirdly... he's going to start school in Kangaroo Valley when we get there. I had a great meeting with the principal, kindergarten teacher and our lovely preschool teacher who drove all the way down for it, and everything went as well as it could possibly go. The principal listened, asked good questions and then asked me, "so, what do you want him to do?"

My answer was: "go to school part time three days a week please." And the answer was "Yes."

Bright Eyes was funny at the school. We bought the uniform and he wanted to put it on straight away. Then he wanted to go out and start that day. He was really disappointed when I said he was starting on another day!

How do I feel? Pleased, and terrified at the same time. My beautiful daughter came to me in tears and said, "Mum, what if there's a bully at the school and they pick on him?" I assured her that if anything of the sort happened, I would be in there like a flash and would do everything possible to protect him. In the end, her fear is my fear too.


Anecdote: These days whenever we go out shopping, Bright Eyes has no qualms about talking to the checkout ladies like this. "Hello, it's Bright Eyes here. I am number 5. I go to big school in Kangaroo Vaaaa-lley." (I'm trying to teach him to say "I'm 5 years old.")

Resource: There's a new book out about RDI entitled (appropriately enough) The RDI Book by Dr S Gutstein. I have two copies. If you're desperate to read one, let me know!

New gloves and other things

Right now Bright Eyes is wearing a pair of fingerless gloves that he has had on the last three days - ever since I brought them home for him. It seems that clothes hold no more fears for him. What a blessing.

Unfortunately, crowds and large playgrounds and exhibits still hold many fears for him. Or rather not fears, but over stimulation and build up of aggression. We spent the day in Darling Harbour and it got pretty hairy trying to get him out of the playground. He was bossy, aggro, stiff and tense, and generally hard to handle. I was glad to have my mum there to supervise the other children while I focused on him. I'm glad to be moving to a small village where there is not much to do or look at!

Big news is that he will be starting school probably part time when we move. I am finally at the point where I think he will cope with a bit of school and I don't shudder to send him. He's fairly excited about it and tells anyone who'll listen, "I go to big school in Kangaroo Vaaaalley". Of course, he hasn't actually started to go yet... there's a big difference between anticipation and reality.

If you are of the praying persuasion, I'd appreciate some prayer about his government funding for RDI once he turns 6 in August. I need to apply for special consideration for it to continue an extra year. Otherwise we'll be back to paying it out of our own pockets.

Brand new boy

"Campbell has new shoes. Campbell is a brand new boy. James is a brand new boy too. James has new shoes too. Campbell goes really faster. James goes faster too. Campbell has a new big striped shirt."

This is what Bright Eyes is telling me to write as he stands here looking over my shoulder, reading everything I am putting down.

He really is a 'brand new boy' this week. He is wearing new jeans and new shirts and I managed to convince him that he would go faster if he had fast shoes. After two and a half years wearing crocs, day in and day out, he is finally in joggers! This is a red letter day!

Why all the improvement? I really think brain gym has had a lot to do with it. A lot of gains have been made in the six weeks since we started doing such simple things as hand rubs and muscle stretches. The body is really complex.

I'm feeling so optimistic right now that I'm even going to negotiate with the principal of the school in the new town we're moving to in five weeks time to see if he can attend part time, maybe a couple of mornings a week. This is the FIRST time ever I have felt that he might be able to cope.

Yesterday was beautiful too. We dropped into our daughter's youth group for a parents' evening. A 5 year old boy Bright Eyes knew slightly was also there. They spent an hour actually playing - simple stuff like 'tip' and pulling and pushing a heavy box but... they were really relating. I am a happy mummy.

Challenges will come as we move, however, so I'll keep you posted.

Brain gym and empathy

Bright Eyes has begun a thing called Brain Gym which is kinesiology or something like this. Personally, I'm not completely up on how it works - only that the muscles of your body connect to your brain, and somehow by working specific muscles in particular exercises you can help your brain make connections which will help you.

That's all fine and dandy, but the thing I really want to share with you is that Bright Eyes has progressed in 3 sessions from not wanting to go in, not talking to the lady, not doing anything she asks, and not even letting her come near him, to being able to hop up on the table, let her touch him and follow her instructions such as 'push your feet', 'pull your toes', 'breathe in and bring your head up', 'no, not so much, just a little bit' etc.

It was amazing to watch him cooperate with her and even enjoy her company this week. I'm delighted.

His little friendship at preschool has continued. This morning when I arrived his buddy said, "Oh, you brought your Thomas again. I asked my mum for a Thomas and she said No no no. That's not fair." Bright Eyes agreed. "No, that's not fair."

Show and tell

We took a morning to go to the local Show today. At first we were a little bit hesitant, knowing that Bright Eyes has not reacted well to fairs and museums and things like this in the past, but we decided to head out anyway.

He absolutely LOVED the rides. This child has no fear. Pictured here is the first ride, during which he yelled out to anyone who would listen, "I'm excited about this. This is really exciting!"

If he was excited then, it was nothing compared to the roller coaster he took on next with his big sister. I could hardly watch the ride for fear of nausea. Apparently he yelled "Stop!" a few times, but when he got off he was breathless... and happy! Later I asked him what he enjoyed the most, and he said, "The roller coaster."

He was anxious and uptight and fairly loud and bossy because of all the excitement, but we were able to take it as over-the-top nervous energy from the stimulation, rather than treat it as bossiness. He did calm down in the end, and we ended up having to leave not because of his needs, but because his big sister was feeling sick... from the ride!

I'll tell you when I'm ready to 'go'

Same headline as below, different topic...

I thought I might update you on Bright Eyes' toilet habits. Anyone with an ASD child is going to be very interested in this. You others may want to pass.

He started to do his daytime wees in the toilet I think at the age of 4 or thereabouts, but there was no way he was going to sit on the loo for a number two. Instead, he told me when he was about to go, and asked for a nappy.

This is still going on! Once a day he runs out, "Mum, I want a nappy" and I obligingly put it on, wait and then clean it up.

Here and there I suggest that he might like to sit on the toilet to do his poo. I always get a violent 'no' and give up the idea for a while. I'm hoping that when he's ready he'll feel able to do it.

A few weeks ago I tried bribery. He was very interested in a Thomas the Tank Engine catalogue. I said, "See that engine there - if you can do your poos on the toilet, I'll buy you a train that you like."

I got a flicker of interest. We talked some more, and he agreed. All day, until it was time to 'go'. Then it went back to being a big fat "Nooooo - I want a nappy."

So I decided to change tack. This time I asked him, "When are you going to do your poos on the toilet?" He thought for a while and said, "When I'm six."

It's become a bit of a fixed idea now. He'll often talk about "When I'm six, I'll go on the toilet. And then you'll buy me a new train." It's a shame we've got to wait until August for his birthday. When it comes closer, I'm going to start talking about not buying any more nappies because he'll be too big, and hope for a smooth transition.

And as a postscript, because he sees his brother wear a nappy, little boy Jamesie, who is completely toilet trained and has been since he was two and a half, thinks it's cool to wear nappies. rats...

I'll tell you when I'm ready to go

Today we had an interesting experience.

Bright Eyes did not want to go to preschool and did the whole scream and cry routine. He shut himself in his room, so I gave up and said, "We'll go later."

"I need to be by myself in my room," he said.

"Okay," I agreed.

Five minutes later I heard this: "You can come in now," so I went in and helped him come out with me. We started to talk gently about preschool and he said to me, "I'll tell you when I'm ready to go to preschool."

"Okay," I said. "Are you ready to go now?"

"No, not yet. I'm still patting the dog."

"How about we do 10 more pats and then we'll go," I suggested.

"20 more pats," he said.

"15," I negotiated.

After 15 pats, we went happily, and I mean really happily, to preschool. And he had a great day.

Brothers

Bright Eyes and his best friend/worst enemy little brother Jamesie.

Focus time

Big sister went off to art class and little brother was at daycare today so Bright Eyes and I had some really good focus time, working on our RDI objectives.

I thought it would be good to get out of the house for a bit, so we spent 1.5 hours hanging around town. We read library books, went to the bank, saw the train station, rode in the lift, went to the park, played trains and headed back to the library again.

Along the way, I kept commenting on things that looked like other things. "Wow - that building looks like our church a bit" or "This lift is just like the lift at the Powerhouse Museum" or "Oh, there's a camera just like Dad's."

This is to get him aware that he can compare familiar situations to new ones and find similarities with other things he knows already.

I did get two comments from him. One was about the park: "Oh, that looks like our garden," and the other about a red POST van we saw: "Oh, it's just like Postman Pat's van."

A second objective is about finding alternative ways to do things. So I kept introducing new ideas. "Hmmm, we could go this way and cross there, or we could cross here, and walk up there," or "We could read this book first, or maybe it would be good to read this one first."

It was a good time together and I think we are getting somewhere on the objective.

... or not to weigh

We borrowed some old scales from a friend to play with for a while. The children are enjoying comparing the weights of objects around the house. We even weighed our pet rats!

Not ready yet

We tried to beat the heat today by riding in our airconditioned car to the airconditioned Powerhouse Museum where we thought we could have a few good hours of exploration.

Unfortunately, however, we realised Bright Eyes is not ready to hit a venue so full of stimulating sounds and sights. We could literally see him getting flooded. He turned bossy, controlling, anxious and loud. After a reasonable attempt for the rest of the family, we left for icecreams and headed home.

Maybe we'll try again next year.

Donut surprise

Of all the expensive kitchen appliances I've bought for the purpose of creating better things to eat for my picky food child Bright Eyes, the $17 donut maker from Big W has been the most successful.

The problem with a lot of gluten free cooking is that it just seems to crumble apart. I have not had good success with cookies and muffins. However, if you put the same batter in the donut maker it comes out so together you wouldn't even know it was GFCF.

Today's recipe is a lucky success: Zucchini and Banana donuts. Here's how I did it.

Peel (to get rid of the green bits for hiding purposes) and steam a zucchini. Whizz together with a ripe banana into a disgusting looking mash.
Cream 150g butter with 3tsp sugar.
Add the zucchini/banana mix.
Add one egg.
Mix in 1 tsp baking powder and about 3/4 - 1 cup of GF flour. (Honestly, I measured nothing, so I'm guessing. You need a relatively thick batter.)
Spoon into the donut maker and cook the donuts.
Ice with a thin coat of chocolate icing (just icing sugar, cocoa and water)

It might work in a waffle maker or small pancake maker too. The last batch of donuts had sweet potato in them, so you could try any type of pureed vegetable.

I'm pleased I made them with a banana because I'm not tempted to eat them at all, bananas being my least favourite food (besides liver).

Happy happy happy happy happy

Fanfare: boom dish boom dish tah-dah. Bright Eyes has made a friend!

I walked in to preschool to pick him up from his first day back on Wednesday last week and I saw him hand in hand with a little boy. The two of them came up to me and the little pal said, "Could we have a few more minutes to play some more?"

Flabbergasted, I said, "Of course (heck, kid, go do what you want)" and made big eyes to the preschool teacher.

"They've been like that all day," she said. "They are playing together and enjoying the same things. They just clicked from the start."

The little fella (and I'll have to name him Buddy I think) is about 4 and was not in the class last year. He loves cars and trains and all the things that Bright Eyes loves so they are a good match.

Day Two was the same. The teacher showed me a photograph she took of Bright Eyes sitting next to Buddy in group time, with his arm around his shoulders. I walked out floating.

This is really the first friendship. I'm going to try to have Buddy around to play if it keeps going. If that happens, it will be Bright Eyes' first real playdate. And you'll hear about it.

Just when I thought I couldn't get enough happy things in one week, this morning for the first time ever, Bright Eyes went to Sunday school and stayed in for the whole class. It's a new class, with only one other little boy in it (also about 4, and looking exactly like Buddy), so that will be perfect for him.

Thanks for sharing my happiness!

Journalling

My RDI task at the moment is journalling about working with Bright Eyes to cooperate and co-regulate.

Bright Eyes has been improving in his ability to be guided and to participate in a game or a task, as opposed to having to control it all the time.

We have really been enjoying having games with his Brum car and another one which I christened 'Sheridee'. It's a girl car apparently. They have been shopping, built garages, visited the beach and the snow, sailed in boats, pretended to be airplanes, gotten married to each other and generally had as full and interesting lives as is possible for small toy cars.

Bright Eyes continually invites us to participate with him, saying 'Want to play?' in a really sweet voice and full eye contact.

Today we made signs with the names Brum and Sheridee. I wrote their names in pencil, and gave him the fat texta to hold to trace over them. He wouldn't do it unless I had my hand very close to his on the pen, but the movement and the grip was all his. He seemed very proud of them at the end when I showed great excitement at the fact that he had written by himself.

We had a blow-out the other day on a walk around the lake. Bright Eyes decided to be the 'leader' and delegated his brother to being the 'follower'. His brother was unhappy about this and chased him to try to take over the 'leader' role. Fisticuffs ensued and I had to hold Bright Eyes back and say "That is not ok."

His brother took off, and Bright Eyes collapsed on the path. "I can't go. We have to go home. Home time. etc etc" in loud yells and screams. I sent the sister after the little one and got Bright Eyes up by noticing that he might get bitten by mosquitoes if he remained on the path. We walked along with him in varying states of unhappiness, but at least he was moving. It will be interesting to see if he can cope with not necessarily being the leader next time we try it.

A recent email from a friend who did some babysitting

Dear Cecily

Thought you might like to know that Bright Eyes really interacted well today with the kids and me! I think I told you he sat at the lunch table, waited till we were all there, and then said ‘George is my friend, and Amelia is Jemima’s friend’. A bit later when there was a lull in the conversation, he said “Sarah, I went ice skating and I had hot chippies (I think that’s what he called them) for lunch”. Also, we had a conversation then about whether he fell over, whether he got bruises, if he went roller skating.......

And like you suggested when he wanted a second apple iceblock, and I said that’s fine, but can you ask me with manners (which is exactly what I say to mine), and he did.

I have read your blog about Bright Eyes, and the past week at RDA (how full on). I was reflecting on what I knew of him when he first arrived here and where he is now, and although I know you see a long way to go, I also see a long way come. Please be encouraged, and encouraged to keep going.

TV free

So far so good on the no TV front. They don't seem to be missing it at all! The littlest one asked where it was and Bright Eyes said, "It grew arms and legs and walked away."

?????! Where did that come from?

RDA

RDA stands for Relationship Development Assessment which is a number of appointments spread out over five days with our RDI consultant. We look at how Bright Eyes is going, try some things out with him, and make plans for progress.

I thought the first session went brilliantly and I was a great RDI person... so I was extremely humbled to realise through our consultant that actually Bright Eyes wasn't doing so well. He appeared to be communicating and being an apprentice but if you looked closely, he was actually taking over and directing the play the entire time. I was accommodating him in a big way so that things would go smoothly. However, once he was asked to go along with me, he resisted dreadfully.

Once we worked this out, the rest of the week was spent helping him to be ok with being an apprentice and learning how to play within a relationship rather than having to be in control of everything. It took a lot of crying and tears (both of us) to get to the last session in which our play was a lot more interactive and relational.

I found it all very emotional and quite draining, but I've come home positive.

We have also made a HUGE change by putting the TV away. We knew, but we didn't want to admit that for a while now, Bright Eyes has been living in TV-land. It has become an addiction for him.

We have let it go on because it has been easier to keep him quiet by putting on a video when things get a bit rough. However, in the long term, that won't work for his benefit. So now we are TV-free, and we'll be strictly limiting computer time for everyone.

Today was the first day. I was expecting tantrums and fuss, but honestly - he hasn't even noticed. Let's hope it continues to be this easy!