Excuse me, but

Last night I had a dream that the Red Wiggle, Anthony, told me off for the way Bright Eyes was behaving at a school sports day.

"Excuse me, but he's autistic. I can't make him be quiet," I said to him, and then woke up.

Now that Bright Eyes is 5, I am starting to get a few more comments about his behaviour. People don't necessarily expect say, a three year old, to look at them, or answer, or even say anything remotely coherent. Once a child gets to the age of 5, however, there are more expectations on him.

Today we were at the pool. We have been there before with fewer people around. Bright Eyes swims very happily and confidently with his floaties on and loves being in the big pool.

Today was a lovely warm Sunday afternoon, and the pool was full. I was sitting by the side watching both boys when I saw o0ne of the lifeguards come by and try to tell Bright Eyes something. I could see that he was getting no response, so I went up to see what the problem was.

"He can't be in the big pool with floaties," he said. "If he loses one, he'll be in big trouble and I can't watch him all the time."

I started to get anxious. I knew that a happy trip to the pool could possibly turn into a major episode if I had to make him move.

"It's ok with me," I said. "He goes in there a lot and I'm watching him closely."

"Well, he'll have to go in the small pool. He just can't go in the big pool," he said again.

"I'm going to have trouble with that," I said. "He's got autism and if I tell him he has to move out when he's already been in there, he's going to cause a big big fuss."

"Oh, hmm, well, I guess if you stay here and watch him it will be ok," he said eventually. So I stayed less than four feet away from him for the rest of the time.

When the lifeguard came back, he tried to talk to him again to explain, but Bright Eyes figured out that he didn't like what he was saying, so he said to me, "Make him go away," and pointed at him. "I don't like it."

The lifeguard laughed a little bit and Bright Eyes said, "It's not funny. He can't laugh!"

After a few more unsuccessful attempts to connect with him, the lifeguard gave up and said to me, "You've got your hands full."

Yep.

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.

New shoes

It must have been the prayer requests that I sent around yesterday... because Bright Eyes had a great day.

First off, we put on his new shoes. These are shoes that have been hanging around the house for at least two months. He is notoriously fussy about what he wears and will not wear anything interesting (no pictures, patterns or cute colours) or new. So given that his current shoes are getting too small I knew it was going to be a hard job to put new ones on him.

For a few months I've been pointing out the shoes, holding them up against his feet ("No no no no no no") and talking about them. Yesterday I "lost" his old shoes and tried to put the new ones on, but he ran screaming into the other room, so I miraculously "found" the old ones again to reassure him.

Today though, we managed to get one new one on. At that point, he got upset, but not uncontrollably. I stopped him from pulling the shoe off, got him on my knee and gave him a cuddle for about five minutes. Then I picked up a few favourite books, and we read together for a while. I got the second shoe on when he was happy, and again did the cuddle and the book routine so he wouldn't take it off.

At that point, he was still protesting mildly, so I kept him close to me for the rest of the morning before we went out. If he even had a minute alone, I figured he would have taken it off, so he didn't get a chance.

End result: the shoes stayed on all through church. He walked there and back in them and didn't complain. Hooray.

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'.

The second year: signs emerging

The second year of Bright Eyes' life was where we started to notice that he was not developing normally.

He had an absolute obsession with pressing buttons. When we arrived at my parents house, he would run straight through the door, ignoring the grandparents, heading for the video, TV, remotes, light switches, phones, computer, fan, oven (!!) and any other switches he could find.

For a long time I tried the tactics that had worked with my daughter from the age of 8 months: Say "Bright Eyes, No" in a deep growl. Walk up, remove his hand, take him away from the situation and distract with something else.

Ha! It didn't work the first time, and it never ever worked after that. If he was removed happily, he'd head straight back for the switch and keep presing. If he wasn't removed happily he would throw an enormous tantrum for 1/2 hour and then head straight back for the switch and keep pressing.

After a lot of trial, I realised it was hopeless and didn't worry about the switches in our house. For a while I made a half-hearted effort in other people's places to show that I was a respectable mother, but most of the time I just picked things up out of his reach or tried to ignore it.

He looked past people and avoided their gaze. In fact, he got very upset if most people looked at him, spoke to him or in any way acknowledged him. Again, I made efforts to get him to look at family and friends to say hello and goodbye, but after months of failure my efforts were mostly token and for show so that others wouldn't think I was a hopeless or irresponsible parent.

He didn't talk. Not only that, he didn't seem to be understanding things either. Other children about the same age seemed to be able to 'get' concepts like 'Mummy's got a baby in her tummy', or 'we're going to church now' or 'this is a birthday party and we're having cake'. Bright Eyes seemed oblivious to most things around him. He lived only for the immediate moment.

He couldn't make transitions. Every day is made up of transitions from one activity to another. "Now we're eating breakfast. It's finished, so we now go and get dressed. Now it's play time outside, now we have to go inside..." Every transition Bright Eyes made, he got hysterical. Moving from simple activity to simple activity was distressing and difficult for him, even though he had done each thing over and over again every day.

He ran away. All the time, wherever we went, as far as he could go and extremely quickly. From being a baby who hardly moved, he suddenly found some speed once he began to walk and my days of carrying on involved adult conversations in unfenced areas were over. We lost him onto main roads twice and spent two 15 minute periods looking for him when he disappeared on the communal property where we lived. (He was behind the bushes next to the fence, and in another family's unlocked upstairs apartment.)

He hardly felt any pain. I was proud of my tough little fella. Unlike his big sister who was always 'more sensitive' (nice words for being a complete sook), if Bright Eyes fell over, he just got up and kept on going. Most other children would have been screaming with some of the knocks he took, but he hardly seemed to notice. "He should be a football player" I said proudly. Little did i know that feeling no pain is a common feature of autistic children.


All of these things made me start asking questions. I just didn't feel right about his development. But at the same time there seemed to be lots of normal things too. He was affectionate with us. He adored his big sister and would play with her as much as he could. He seemed to eat well enough (although he was incredibly picky - more on this in later posts) and he was growing. Also, he was hardly ever sick and I breast-fed him until he was nearly 2.