A prayer update...

...for any who are kind enough to pray

We’ve had now a full six months since his therapies started in earnest. The first few of months showed a whole lot of improvements, which was so encouraging. Progress over the last couple of months has slowed somewhat and in some ways I feel that we have reached a bit of a plateau. Mind you, that plateau is a whole lot higher than where we were six months ago, so when I remember to look back, I give thanks to God!

Other things to give thanks for are: better health for me, a good relationship with our RDI therapist, generous people who have given some extra dollars to help us with the costs of therapy and diet, wonderful support from so many people here. I have been overwhelmed by the love and support of so many praying people.

The prayer points this month are really to do with specific things that would make all our lives just that little bit smoother and easier right now. These are:

The Jacket!!!
It’s cold here – average 9-10C every day at the moment. We have lovely central heating in the house, but when we go out, we all need jackets. The trouble is, Campbell refuses point blank to put the jacket on. We have had tantrums on tantrums over this issue. He would rather be cold than wear it. However, he is absolutely happy to put it on to go outside at preschool! The preschool teacher never has a refusal and it’s the same jacket! I don’t know how to handle this, so I’m asking you to pray: please let Campbell be happy to put his jacket on when it is needed.

The Food!!!
His diet remains as limited as ever. While he has stopped crying and yelling at most meals (as he used to 6 months ago) meals times can still be fraught, depending on what’s on his plate and what he wants to be on there. I would just love him to be willing to try some new food – particularly meat and vegetables, so I’m asking you to pray: please let Campbell be happy to eat one new meat and two new vegies.

The Toilet!!!
I asked you to pray about toilet training last time. Thank you because we have had some good steps forward with this. He now is frequently happy to go (not always) and will always ‘produce’ once on. But he needs to be more independent about using it, and then self-motivated to go. I’m asking you to pray: please let Campbell be motivated to get himself to the toilet.

A final request.
I’m very much into asking God to answer specific prayers, as you can see by the above. And something that would be fantastic for all of us would be for Campbell to be cured of autism. (: I have no qualms about asking God to do that. I understand perfectly that he may say no, and it may be the thing that Campbell and we struggle with for the rest of his life, but if you never ask the question, you never know the answer. If you feel comfortable, I’d love you to pray with me for a complete cure of Campbell’s autistic spectrum disorder.

Little catches of joy

Yesterday Bright Eyes did these cute things:

He found the play apron that goes with the toy library kitchen, put it on and stood up with me at the kitchen bench. "I'm a lady, I'm a lady." (Hmmm. We've got a bit of gender stereotyping going on here obviously. Daddy needs to spend more time in the kitchen.)

After that, he came to help me 'cook' and put the rice in the rice cooker. Any activities that show co-ordination and regulation of actions with another person are so encouraging!

Again in the kitchen. While up in Katoomba with friends, I bought some cute cookie cutters and set out to make gingerbread on my return. Bright Eyes helped cut them out and put them on the tray. Together we put them in the oven. When I pulled them out, I asked him if he wanted one. He said yes, so I gave him a gingerbread man. He put the head in his mouth and took a bite, looked up at me, said "I don't like it" and put it back on the bench.

It might sound like a waste of effort, but I was pretty happy with that result!

We had the spare queen mattress on the floor of the RDI room yesterday. He and sister love jumping from the window frame on to it. They do forward and backward rolls, co-ordinated jumps and jumping at the same time. He got on the window himself and said, "I'm a bird." Then he flapped his arms and said, "I'm a bird. I'm flying the tree," and jumped down. Beautiful!

Oh yeah... I forgot

I've been reminded today by our RDI consultant* to keep working at my use of language with Bright Eyes.

It takes a lot of effort to keep the ratio of 80% declarative/20% imperative language. I really became aware again today of how much of my speech is telling, bossing, asking, directing when I talk to all the children. I have to create more opportunities to share my experiences or observations with them to even the thing out.

As well as that, I have to cut down my total use of words and become more non-verbal. This is so Bright Eyes learns to use all methods of communication more effectively - tone, pace, body language, expression, non-verbal sounds.

Why do I keep forgetting and having to go back to basics again?

I think it's because it actually has such a good effect on him. Whenever I do get my language right for a couple of days, I can visibly see the improvements in his cognitive processing. He takes a few steps forward and starts communicating himself at a higher level.

At that point, it's easy to match his increase in language with an increase in my own. I start to fall back into old habits because I think he's improved so much, and then gradually, almost unnoticeably he creeps back into scripting and bossing and controlling his environment, which is the thing I am trying to change to begin with.

Just as well I have this blog with which to be as verbal as I like.


*This is the really good thing about working with a consultant. She is on top of things that I forget, or don't do well, or need help or new ideas with.

One sad, one happy

One sad thing

I visited a playgroup today for the first time since we moved here. It was a really nice playgroup: well run, friendly people, nice toys and happy children. I have only good things to say about it. My boys were happy and played well. I had a yummy cup of tea, and managed to say no to the delicious chocolate muffins being passed around.

Why did I feel so rotten being there then?

I hate to say it, but it's because I am still jealous of everyone else's 'normal' kids. Because I still feel like I'm just making it every day. Because I feel like I've joined a 'secret club' that no-one else there is part of. Because I feel like I've got bigger problems.

Selfish? Maybe. My husband says it is 'reactive depression' to a small loss. (He went to a seminar on depression recently.) With every big loss, there are lots of small losses. Today's small loss was not being able to go to a playgroup and forget that Bright Eyes has autism.

One happy thing

A lovely lady from our church, who happened to be a good friend of my nanna before she died, has offered and is keen to help me out with Bright Eyes' RDI. She has offered twice, once in writing, so I take that as serious!

I'm going to give her a CD of some RDI lab time activities plus some reading so she can learn about it. Then she's going to come and sit in on some lab time, get Bright Eyes used to her, and hopefully do a session or so a week, plus maybe take him for a walk here and there.

Wow!

Just having a sad day

My emotions still fluctuate pretty wildly about Bright Eyes.

Some days I'm just delighted with his progress and feel up and bright about it all. I can see how far he's come. I can remember how far he had to come. He says things like "I've got the hippy-cups Mum". (Hiccups!) On those days, he's cute, adorable and I love him to death.

Other days, I feel down in the dumps and despondent. Sure, he might have improved. But it's a damn lot of hard work. And there's just SO far to go. When he tells me about every 'Give Way' sign we pass on the way home, ten times for each one, I just wish everything would go away. On those days, he's hard work and irritating, and yet I still love him to death.

Now this is really autistic

Bright Eyes loves colours.

He often names things by their colours rather than use the correct label. For example, I gave him a drink today. He took it and then called out "Yellow, yellow, yellow".

I was scratching my head. "What do you want? What is yellow?"

Then I noticed the yellow curly straw lying on the counter.

"Do you want the straw?" I asked.

"Yes! Yellow!" he said.

I said, "Can I have the straw please mum?"

He echoed, "Straw please mum?"

I didn't realise that he was so fixated on his colours until today, though. At preschool they were singing the song about who is wearing which colour. I think it goes like this: "Blue, blue, blue, who is wearing blue today? Alex is wearing blue today," etc.

Apparently he could name the colour every child in the class was wearing including those children who were out of sight and doing something else at the time!

On one level Bright Eyes is smart to be able to do that, but really it just shows how autistic he is! Sure, he can tell me what colour every one in the room is wearing, but he can't answer a question beginning with the word 'why'.

Siblings

Bright Eyes has two siblings. The one he likes best by far is his older sister. She is almost exactly four years older - oddly enough they had the same due date!

She and Bright Eyes have an interesting relationship. She is very much in charge of their interactions and play. He will do almost anything she wants and to watch them truly playing together is a joy. They race around the lounge room playing chase, being lions and making cubby houses together.

She is very protective of him and loves him fiercely. She knows his quirks, can handle his tantrums and will often tell me what she thinks he needs if he is being difficult. Sometimes that's fine... other times it gets annoying. Once when Dad got cross at him because of impatience, she was furious!

I don't think a child could find a more wonderful older sister.

And yet her drives her crazy too. Sometimes, after a difficult afternoon with tantrums or because of her own tiredness, she just can't cope with him, and on the odd occasion I have let her eat dinner on her own in her room so that she won't explode with frustration.

We told her about autism when Bright Eyes was diagnosed. I've heard her explain to her friends sometimes, "His brain works a little bit differently, which is why he can't quite speak right. We have to teach him things so he'll know what to do."

I'm trying to be open to talk about the autism with her if she needs to. Once, after a particularly difficult day, she said, "Mummy, I really hope I don't have a child like Bright Eyes when I grow up."

My heart felt wrenched, but I was glad that she felt she could express herself. She really wasn't trying to be mean or rude. She just saw that I was struggling with him and realised that sometimes things are harder than you hope for.

I said to her, "You know, nobody wants to have a child who has struggles, but sometimes it happens, and we just have to love them even more and help them to get through it."

She has also said, "Mummy - if I have a baby with autism when I grow up, you'll know just what to do to help me."

Boy, she has confidence in me...

Update

Just a few cute things I've noticed this week.

Bright Eyes has been talking to people - real, 'experience-sharing' communication. Some things he's said include:

"I'm hopping [proceeds to hop].... I'm twisting [does a little Wiggles dance]... I'm twisting faster [does it faster]," or "I watched Lunar Jim/Elmo's world/Postman Pat."

He talks to any visitors we have, anyone we see on the school playground and people in shops. Last year at this time, if people looked at him or tried to talk to him, he screamed loudly and turned away. He certainly had no spontaneous conversation that had any social relevance, and couldn't even say hello or goodbye. It's a huge improvement.

He's been playing with a two-year old. Our neighbour across the street sees us every day at the school playground when we pick up our kids, and Bright Eyes loves playing with her little boy. They run around the garden and chase each other, climb big rocks and generally have a great time, laughing and looking at each other.

He's noticing things when we drive in the car. Today we took a beautiful drive out to Robertson.

"There's a cow," he said. "Moooooo." I turned back to look at him, and he grinned at me. We mooooed together.

A year ago, Bright Eyes would sit in the car and fiddle with his trains that he would have insisted on bringing in his hands. And he would have screamed if the Wiggles music went off. He was oblivious to me pointing out anything of interest, and he certainly would not have participated in making silly animal noises!

Thank God.

Good watchin'

On A Current Affair on TV (channel 7 or 9? Shows how often I watch it...) on Monday night, there will be a story about autism and RDI.

You will then be able to switch to the 7.30 Report to see their story about the same thing!

I was going to be on the story on A Current Affair... but apparently Mittagong was just too far to come. Missed my chance to be a TV star!