Baby brother

I've mentioned Bright Eyes' little brother a few times, but I don't think I've told you that the two of them just don't get on!

It's not the little one's fault. He wants to play. He shows empathy when Bright Eyes is having a tantrum. He looks for him in the morning when he wakes up. He calls him "Ca-ca". It's really cute.

I just wonder how long his enthusiasm will last for, given that Bright Eyes hits, pushes or headbutts him at every single opportunity he can find. If I have the two boys in a room together, I have to be there with them, because it will only take one minute before one of them is yelling, either from frustration or from pain.

This is probably a normal sibling reaction, but I think it may be exacerbated by the fact that the baby represents uncertainty for Bright Eyes and dealing with him requires more flexibility than he is capable of... and that's the autism talking.

S-L-O-W D-O-W-N

Slowing down is such an important part of RDI. Why do I find it so very very difficult?

I'm the sort of person who has always done four things at once, while thinking about the fifth and sixth things to do at the same time. I like achievement. I like efficiency. I like competence. I like not wasting time. I finish people's sentences for them. I get impatient when I have to wait... for anything.

I'm a classic Type A personality. I create stress and panic when I can't. It's not a great way to live.

Our feedback from our consultant today was to give Bright Eyes more space to process and think, and to slow down ourselves as we do this.

I really appreciate feedback like this. It brings me back to the basics. I've been flapping around in my head, panicking madly for a number of weeks now, and feeling dreadful physically as I do it. So today I have been conscious of my breathing and conscious of needing to chill out and just calm down.

I think one reason is that I was busy looking for another 'magic bullet' to fix Bright Eyes. I need to remember that I've found that magic bullet already. It's called RDI. The only trouble is, it's not instant and its' going to take time, and I have to change myself to be able to make its magic work.

Today

Dentist! We went to the dentist to get my tooth fixed. I parked the little boys on chairs with a box of chips each while I got done, and they were beautiful (the boys, not the chips). Bright Eyes has been playing dentists with his sister, so he was interested in the chair and had a ride. He knew to go up and down, lie back, open his mouth and say ah, and then 'rinse and spit'.

I managed to cut his hair! He sat on the bench with a tape playing and was completely still while I trimmed around the ears and back. I didn't make a big fuss of it, just grabbed the scissors and began.

Eggs! He ate three of them for dinner. That makes me feel better about the week's nutrition. Plus I've been getting coconut kefir (a pro-biotic) into him via his juice and water.

Shopping! He was a great helper in the weekly supermarket trek today.

Poo! Not what you want to read about, but he had a normal motion yesterday. Wow. That's about the first one in a year.

Quite a few transition tantrums! I counted six of them all up. I did have a success with getting him out of one of them though. He was screeching "Noooo" at me. He wasn't too upset yet, so I imitated his face and his voice and screeched back at him "Noooooo?" and then gave him a silly look. It was as if he realised how ridiculous his yelling was. He stopped, smiled and then changed his voice and face to ask for what he wanted nicely. My goodness!

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.

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...

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.