Thursday, November 29, 2007

A calm day

While I was fighting doctors in Sydney, Bright Eyes was having a good day at preschool. He was absolutely delighted to have daddy pick him up and was calm all afternoon - not a single tantrum.

When I said good night to him, I asked about preschool.

Him: "Hamilton hit my back."

Me: "Oh, did it hurt?"

Him: "Yes."

Me: "Did you tell the teacher?"

Him: "Kristie" (which is the teacher's name)

Me: "Did you hit him?"

Him: "No. I didn't do that. He did that. He did it. I didn't!"

When he's calm, he's great, and he's improving!

Fringe dweller

Although my two year old is not the subject of this blog, he features in my worries frequently.

I have been concerned about him for a little while. He’s obviously not ASD from his social skills, and I owe a lot to RDI for helping me to recognise his good referencing and checking. However, I think his speech is slow, his bowel motions and picky food habits remind me of Bright Eyes, plus he has a clear milk intolerance.

I thought he might need testing for intolerances so that I could get on top of whatever gut issues he has and increase his rate of normal development, so I went into the GP a few months ago to ask her for an allergy test. She wrote a referral to the allergy clinic of the best children's hospital in the state, which is where I drove (1.5 hours) today.

The first thing I said to the paediatrician was “I’ve got an ASD boy, and I’m concerned about this child because I know there’s a brain/gut connection and diet plays a big part in autism, and I think he has some allergies, plus a few gut issues the same as my ASD boy.”

She said straight away, “Well, you know that research has been completely debunked. Are you talking about Wakefield’s study? He was pulled in front of the Medical Board and given a dressing down. He’s lost all credibility.”

I was completely flummoxed and said, “I don’t know who’s done what research, but there’s a lot of stuff out there that says there is a huge connection between gut and brain and diet is really important.”

“Well,” she said, “there’s a whole lot of stuff on the internet and you can’t believe everything you read.”

At that point I started to cry. I spent the rest of the consultation in tears, and in the end the doctor asked more questions about me than the baby, and even suggested I go to a psychiatrist for my depression.

I was too polite to tell her that I was crying because she completely rubbished everything I have learned and put into action.

I have spent sooooo long doing research and reading, and I have put in so much energy implementing diets and keeping Bright Eyes from eating stuff he would like to eat. And I have seen results. And then I have a doctor tell me there's no proof and it's bad medicine.

I feel like I am on the fringe... again.

Monday, November 26, 2007

Same old same old

Sometimes I wish I had something new to say. But I'm still struggling with frustration at constant tantrums, worry over food issues and energy to do RDI therapy. Every day seems much the same and I'm done beat by the end.

Today his tantrums were as follows:

7.30am - didn't want a banana for breakfast
8.30am - didn't want to turn off the TV
9.45am - wouldn't get out of the car after shopping
11.00am - didn't want to walk down to the butchers to buy sausages
11.20am - didn't want to get out of the car (solution to not walking) after buying sausages
11.45am - didn't want to sit up for an early lunch
12.00 noon - would only go and do therapy if he could take in his Wiggles toy
2.45pm - didn't want to put on his shoes
3.45pm - didn't want to come out for afternoon tea
4.45pm - definitely didn't want to leave our friends' house to go home
4.50pm - didn't want to get out of the car
6.15pm - didn't want to have his shower

When I say 'didn't want' I mean immediate tensing, stiffness, chin out, head up, scream "Nooo, no no no no no noooo!" I can calm him down by cuddling or carrying him and talking gently to him, but it takes a few minutes each time.

It is the ongoing grind of this sort of stuff that wears me down.

However, far be it from me to ignore the good stuff.

I think he definitely has one of the latest RDI objectives down pat: he is able to change his expression and tone when he wants to present a good impression. So if he wants something now, often we'll have him nodding and smiling at me as if to say, "Come on, when I'm cute I know you'll do it for me", rather than just demanding in a monotone.

Also, today he really did 'get' it when I told him what was happening. In the morning we had a little change of schedule, so I spelt it out pretty clearly. First, turning off the TV early (no Bear in the Big Blue House), then dropping off his sister, then shopping, then home to watch an episode of Bear.

And then in the afternoon, he got it again. First to school to do the pick up, then to our friends house, then home for bacon and eggs. He really understood and repeated it to me a few times. Too bad he couldn't cope with leaving their house when it actually came to the point...

Sunday, November 25, 2007

An epidemic

I heard this incredible figure last week.

According to the Mindd Foundation (link to the right) there are 1 in 120 Australian children with a gut-brain disorder, including ASD, ADD, ADHD, dyspraxia, dyslexia and schizophrenia. For a variety of reasons, we're in the middle of an epidemic.

And I keep meeting people with children who fit the criteria.

Today I met a lovely lady who had a very active, rather difficult three year old boy. We started to talk about it, and she mentioned a number of things that she found hard about his behaviour. I asked if she had had him screened for something like ADD, and she said that she wanted to, but that her family kept telling her nothing was wrong.

"But they're not the ones who have to live with him every day," she said. "I know deep down there's something wrong."

This is the third child I've met in two months who have symptoms similar to Bright Eyes. I asked her some questions and it sounded like a very typical case of a gut-brain disorder.

Some of the things that are easy tell-tale signs are:

- glassy stare
- difficult behaviour and lots of tantrum
- difficulty making transitions or thinking flexibly
- food intolerances or picky eating
- abnormal language development (including 'scripting' from TV shows)
- abnormal bowel movements
- difficulty toilet training

I wrote down some resources on the web for her and recommended she get an assessment and think about changing his diet right away.

Tuesday, November 20, 2007

Ups and downs

This morning Bright Eyes woke up in a mood which meant that I spent most of the morning soothing and comforting. Everything was an issue - breakfast, clothes, undies, music... The mood continued over much of the day.

When I put that together with a sick-ish two year old who also needed soothing, and a husband who was ill himself, it didn't make for the greatest day ever. Plus the SCD carrot cake recipe I tried out wasn't a huge success.

On the upside, however, the honey lollipops I made yesterday were a winner, even though they got slightly scorched in the pan.

And I had a conversation with Bright Eyes, in which I think he actually understood some things.

I had to go out for an hour to the School Council meeting in the evening. When I got back, he asked, "Where are you?"
Me: "I went out. I went to school."
Him: "Go get Maddy and Bronte?" (two little girls I pick up once a week)
Me: "No, I went to talk to Mr Neal."
Him: "You went out. You ran away. You runned away and hided."
Me: "Yes, I did. I went to school."

More reading



The homeopath lent me this book which outlines in fairly extensive, but not unreadable detail the medical issues behind autism.

The basic premise is that autism needs to be seen as a disease, not a disability. Rather than it being an untouchable brain/neurological/psychological disorder, it is a systemic, whole-body condition which can be treated.

I find books like this a lot more helpful than, for example, the book on George and Sam (see previous posts) because it outlines the problem and the possible causes and gives solutions.

And boy, I like solutions.

Sunday, November 18, 2007

Swimming next door

A very special 'first' today!

Our neighbours, who have not long moved in, have three children, one of whom goes to preschool with Bright Eyes occasionally. They also have a pool.

The weather was hot today, and when we came home from church, Bright Eyes could hear the children splashing.

"Hey, you guys. What are you doing?" he called through the fence.

They called back, "Hi! Do you want to come for a swim?"

We arranged a time and later in the afternoon, the two little boys came to our front door to ask Bright Eyes over to the pool. He went, and had a fabulous time.

Things that are firsts:
1. He, himself, was invited, not just as an add-on with his sister.
2. He wanted to go.
3. I didn't go with him.

Saturday, November 17, 2007

Inspiration

I went to a big expo today, all about gluten free food, health products and diet. It was great to find a few new products, but the best things were the free seminars.

Well-known in the Australian autism scene are Dr Anthony Greenwood and Karen Wheelwright. Greenwood presented on the connection between gut dysfunctions and neurological development, and Wheelwright looked through the variety of different diets that are followed around the place.

My particular interest was in the launch of this book, Healing Foods, by Sandra Ramacher. She has followed the Specific Carbohydrate Diet for ten years and has been cured of colitis. It's a beautiful book and I bought a copy!

So now I've got the kick of inspiration I needed to start the SCD with Bright Eyes - and myself! Yes, I'll be going on it too. To do it successfully, I know I'll have to have a plan. Here it is:

1. Start properly after Christmas.
2. Before Christmas, start trying out different foods and alternatives - especially for breakfast and snacks.
3. Get some friends to attempt a few recipes for me, so I don't burn them and end up discouraged and defeated.
4. Try to change as much as possible now so that after Christmas it will feel normal to do it!

Friday, November 16, 2007

I'm a Big Boy Now!

Background to this: Bright Eyes is getting toilet trained, but has refused outright and to the point of screaming to ever wear underwear.

I was having a relaxing soak in the bath this evening, reading a good book when I overheard this from Bright Eyes who was in bed.

"Dad, dad.... (muffled indiscernible) I need.... (something inaudible)."

Next thing I know, Daddy has stuck his head around the bathroom door. "He wants his undies! Quick! Where are they?"

He grabbed a couple of pairs of underwear and took them back to Bright Eyes, who then said, "No. I'm not wearing them. No!" But instead of retreating defeated, he put the undies in the room and left quietly.

After about a minute I could hear this:

"Bright Eyes is wearing undies. Look! I'm wearing undies. I'm a big boy now."

He had put them on by himself, and was preening to Daddy and his big sister. The look of pride on his face was definitely worth getting out of the bath for!

Hey, it only took five months....

Tuesday, November 13, 2007

Milestones

Two things that Bright Eyes can do:

1. Poo on the toilet.
Yes - hooray! He finally did one, out of necessity, in a strange place, but it shows it's possible. Now to bring the skill home...

2. Reach the doorbell.
This sounds trivial, but he has needed to ring the doorbell whenever he enters the front door for years and it has always been a case of me dropping whatever I'm carrying, hoiking him up, pressing said bell and quickly opening the door and plonking him down so he can hear it ring. But NOW... he can reach it himself. Sooo much easier!

Monday, November 12, 2007

SCD Diet.... should I, shouldn't I

I'm back on wavering about whether I'm going to put Bright Eyes on this incredibly strict diet called SCD - the Specific Carbohydrate Diet. I know that the homeopath is going to recommend that I do when I take him next week.

It sounds scary... I don't know if I can... I don't know if he'll eat... am I being cruel depriving him of food... will it have good effects on him... am I wasting my time...

Something that may help me decide is an allergy expo that is being held this weekend up in Sydney. I just discovered it online tonight! And... there's a beautiful new recipe book for SCD being launched, plus free seminars, and my guess is, free taste testing.

Am I up for it????

A depressing read


My lovely neighbour f0und this book in the library, read it to give herself some more understanding of ASD, and then re-borrowed it for me.

Too bad it was incredibly depressing!

Yes, George and Sam are a whole lot worse than Bright Eyes, but I could recognise a lot of what they did in Bright Eyes and started to feel pretty rotten about the whole thing again.
I put the book down halfway through and will be returning it to the library.


Saturday, November 10, 2007

Talking about... what?

I often share the cute (or coherent) things Bright Eyes says on this blog. The reason is that they are reasonably few and far between. We were outside today on the swing set and this was his conversation to me for about five to ten minutes.

“I’m Sam, You’re Elvis. Elvis! Elvis! Sam and Elvis. I’m Sam, You’re Elvis. (mutter) Sam, Sam... (louder) I’m going up. Up. Up. Mum! I’m going up there. I’ve got my blue and yellow. My blue and yellow and black. Hmm. Who’s that? Mum! Who’s that up there? You’ve got mumble mumble car. Red car is fixed. Black car is broken. Mum! He’s got a broken wheel. He’s got an ouchie. Mum! I’m Sam. I’m Sam. (not looking at me but clearly telling me to get off the swing) Get off, Sir. Sir. Sir. Get off. Let’s get off the fire truck. [Me: No. I want to stay on.] Let’s get off together. Let’s stay on. Wee-oh-wee-oh-wee-oh. We’re doing it. Sir. Red and blue and yellow and black...”

I know that most of the time he was talking about Fireman Sam (a lovely British kids TV program), but its hard to join in with the game sometimes because he has a strict way he likes to play it. There are days when I tune out...

Blah

There are days when I feel like a fairly useless mother and worse RDI therapist. Today was one of those days. Husband was working (sometimes he does Saturdays) so I just hung around with the boys, tired, and unmotivated to do anything.

RDI lab time was difficult. I find it so hard to stop requiring the ‘right’ response, especially when I’m tired. I was trying to set up a game with blocks, building a home, then a school and then a road between them, but he was a little bit more interested in the way two of the blocks fitted together.

Thankfully it is now 6pm and both boys are in bed. If there is one thing I am good at, it is getting children to bed early. I need it for my sanity.
Hopefully tomorrow is a better day.

Thursday, November 8, 2007

Hi visitors

One of the cool things about having a counter for the number of visitors to this blog (see to the right) is that I can also view statistics about where visitors are coming from.

The other day I was delighted to see that people from about 10 different countries plus lots of Aussies from different places are dropping in here and there.

If you're a regular reader, I'd love to hear from you. Why not leave a comment?

Monday, November 5, 2007

Shower boy


Bath times have been hit and miss in our house for years. Some days Bright Eyes is ultra-happy to hit the suds. Other days he refuses long and loud.

Last night my eight year old daughter was (as always reluctantly) taking her shower when the already naked two year old baby decided it would be fun to go in and join her.

I said to Bright Eyes who was just down the hall (having already refused to take his bath), "Hey look! They're in the shower together." He was curious and came to have a look. I could see the gears clicking and a minute later he said, "Me too!"

Quick as a flash I whipped his clothes off and shepherded him towards the shower door. He got in tentatively but in about a minute he was having so much fun with the other children, I just had to take a photo!

Positive things: He chose to do it after I pointed it out to him. He joined a joint activity that looked like fun. It is running water!!! He has never done it before.

Grocery shopping

Monday mornings are our grocery shopping days. They are getting easier!

Bright Eyes is a real helper now. He's interested and shows attention to what we are doing. He asks me if he can buy something with a cute little smile and query look on his face. He finds things on the shelf and puts them in the trolley, and then helps unload. It's great.

Today I was playing problem solving.

Me: "We need something round..."
Him: "A ball?"
Me: "No, something that comes from a chicken..."
Him: "Hmmm. Egg!"
Me: "Yep. We need some eggs."

Me: "We need something that's white and a drink"
Him: "Milk!"

Now if I can get the two year old helping as well, we'll have a fabulous time.

Pay attention Mum!

One of our new objectives this week is getting Bright Eyes to understand that just because someone is in the same room or close by, they may not be available for communication.

We have a long way to go.

He spends his day calling "Mum, Mum" from wherever he is, expecting me to drop everything and come running. He still has that two year old belief that Mummy is 'on tap' and is always available.

If I say, "Not yet" or "later" he yells louder and groans and moans. Apart from inflicting pain, I'm not sure how we're going to teach this one!

Friday, November 2, 2007

Forward, rewind, forward, rewind, forward, rewind

Watching Bright Eyes throw an enormous wobbly this morning because we were travelling to preschool in the black car rather than the red car, reminded me of listening to a CD which has a glitch and keeps hopping forwards and back.

"Noooo black car. Nooo. GO away Mummy."
Come on, sweetie. Calm down. Off we go to the car. I'll pick you up.
He came willingly when I carried him, but as we went down the steps, he couldn't cope.
"Jump off the bricks! Jump off the bricks!" (This is something he needs to do when we go out of the door.)
Heading to the car quite happily, then all of a sudden,
"nooo black car. Noo." Runs back to the top of the step.
"Jump off the bricks!"
"No black car..."

If I hadn't been stressed out by it, it would have been an interesting exercise to watch him switch madly between his obsessive thoughts.

In the end, we were going to be late, so I had to pick him up and plonk him in. He took about 15 minutes to calm down at preschool.

Thursday, November 1, 2007

Small improvements

Some things I have noticed recently:

Together language
He is using a lot more phrases like, "We did it!" and "Let's do it together" and "Can you help me with this Mum?". It shows he is seeing himself as a partner in our activities, and he is therefore participating more. The other day he stayed for a full half hour helping dad and sister wash the car.

Personal likes and dislikes
Yesterday he spontaneously came out with "I like ham sticks Mum" when I gave him his lunch. Expressing likes is not something he has ever done before.

More control
Shame on me - I lost it yesterday and really yelled at the boys. (They were killing each other). Instead of completely melting down he looked with big eyes and said, "Mummy cross!"