The Urine Test

This was an unforgettable event.

We had to take a urine sample from Bright Eyes and get it tested. Bear in mind that Bright Eyes at this stage was not capable of sitting on the toilet and giving a sample. So I rang the collection centre and said, “I’m getting this pyrole test done. But my son’s not toilet trained. What can I do?”

“Easy,” said the girl on the other end. “Just come in and get a special collection bag for it. Then bring it in.”

I went up to Earlwood to get the collection bag. It was kind of cute... you literally stick it on the appropriate place, put on the nappy and wait.

I was worried about how Bright Eyes would react to a bag stuck on his privates however, and decided that the only way I could get it on and keep it on without him ripping it off in a violent rage would be to put it on while he was asleep and collect the wee overnight. Clever me.

We had an appointment to get a blood test done at 9, so we went up all together, wee sample in tow. Unfortunately we were 3 minutes late, so we ‘missed’ our appointment and sat in the waiting room for 45 minutes.

The blood test was a nightmare (holding down, screaming, kicking...) and I was asked to leave the room once I started to cry. So I wasn’t feeling too happy when the nurse looked at my sample and said, “I can’t accept that. It’s not frozen.”

“Not frozen?” said I.

“Yes. It has to be frozen. And is it the second void?” she said.

“Second void?” said I.

“Yes – the second wee of the day. It has to be the second wee of the day,” she said.

No-one told me that on the phone, I thought grimly. And taking my wee sample, I stalked out, prepared to bring one back later.

That day, I managed to catch his ‘second wee’ in the bag. With glee, I stuffed it into the freezer and in the morning I was back with my frozen sample in an esky.

The junior nurse looked at me mildly apologetically. “Um, we tried to ring you, but we’d sent your number away with the paperwork. We can’t accept your sample.”

It turns out this time I had ‘forgotten’ (their word, not mine) to catch the sample in the dark, wrap it in silver foil (shiny side out, dull side in), then freeze it.

I went back. Caught second wee of the day in darkness. Wrapped in foil. Popped in freezer. Drove back up to Earlwood the next morning, esky in tow.

“We can’t accept that sample,” said the aggressive senior nurse. “You didn’t mix it with the acid.”

“You weren’t listening,” she said.

“Excuse me,” said I. “I’ve been listening ever since the first phone call. You’d better tell me EXACTLY what I have to do and I will do it. I have been following your instructions ever since the first day!!”

We went through it twice. Finally, I caught the second wee of the day in the dark, wrapped it in foil (shiny side out, dull side in), poured it into a little container with acid, put the lid on tightly, shook the container, put it in the freezer. And took it to Earlwood the next day.

The senior nurse looked at me. “But it’s frozen,” she said. “We can’t take that.”

“Yes, it’s frozen,” I said - at high volume - it must be added. “It’s been caught in the dark. It’s been mixed with acid. It is frozen, just like you wanted.”

“But... we always freeze it on dry ice,” she said.

And then, defensively, “Well, I’ll send it in, but I can’t promise that you’ll get the correct result. You might be wasting your money.”

Wasting money? What about wasting time? I'll be using a different collection centre next time.

And then we discovered diet...

In all my internet insanity early on, I came across a lot of information about the medical causes of autism and what effect changing diet might have.

At that stage I dismissed it. It all seemed too hard and I was still subscribing to the idea that autism was a problem with the brain - a neurological problem.

Besides, I had heard that 'bio-meds' cost families a lot and people spent thousands on medical appointments and supplements.

However, after our RDI consultant met Bright Eyes, one of the first things she mentioned was looking into diet.

"I don't normally recommend this for the children I see, but in his case, I think he will benefit," she said.

One of his problems was a recurring rash around his mouth, which he licked continually all day and night. He also loved putting metal in his mouth. (My keys were always soggy... urgh).

"It might be a mineral deficiency," she said.

I didn't know what to do about this. It looked like a huge area to investigate. And how was I to find the right doctor after all my negative experiences with paediatricians and psychologists so far?

Thankfully, the friend I had made through the early intervention playgroup (with an autistic child same age as Bright Eyes) was already going down the same route. She had found a GP with a particular interest in autistic children. Even better - he bulk billed! No expense. Hooray!

We made the appointment. It was an interesting experience. His practice is in one of the most multicultural of Sydney's suburbs, and his grotty little waiting room was filled with people of all colours, speaking in multiple different languages, in different ethnic dress. His is not a practice that runs on time and we waited at least an hour to see him. Bright Eyes was at the end of his tether by the time we got in, but it was all worthwhile.

He talked at great length about essential mineral deplention, undermethylation, digestive enzyme support... and a LOT of other complicated terms that I could not remember or replicate for anyone else. But he did it with such gentle authority that I believed everything he said and decided to do everything he suggested.

He ordered a battery of tests (aah - that's where the costs come in!) and we set out to do them and see what resulted.

Chanting

At the time of diagnosis, Bright Eyes' language was mostly confined to 'scripts'. He learned phrases from books, TV shows and CDs and repeated them over and over and over and over and over and over and...

That would have been irritating enough, except that most of the time he wanted a response from me, again and again and again and again and...

So a typical conversation would go like this.

Him: Thomas the Tank Engine, mum. Thomas the Tank Engine mum. Thomas, mum. Thomas the Tank Engine mum. Thomas the Tank Engine mum. Thomas the...

Me (in a resigned voice): Yes, Thomas. Thomas is a train.

Him: Thomas has six small wheels mum. Thomas has six small wheels mum. Thomas has six small wheels. Six small wheels mum.

Me (in a slightly more irritated resigned voice): Yes he does. He's got wheels! Wow! Six of them.

Him: Thomas the Tank Engine mum. Thomas the Tank Engine Mum. Thomas the Tank Engine mum.....

And so it went on, for most of the day.

I was in a dilemma about it. On one level, he was communicating with me, even if it was a scripted phrase, and even if he was trying to control my communication. (I'll talk more about control in a future post.) So I didn't want to just ignore him. Anyway, I couldn't ignore him. He rose in volume every minute that I didn't answer!

Two things helped - both suggestions from our RDI consultant.

Firstly, she prescribed I-pod therapy. Not for him - for me. As my tension levels were rising with all the scripting, she suggested I get some music and play it all day. I would be able to ignore some of the scripting and keep myself happier, thus making it easier to communcate more effectively with him when I wanted and needed to.

I tried this - and it worked. I felt happier, and surprisingly it reduced Bright Eyes' demands on me a fair bit.

The second solution was to start chanting. I used Bright Eyes' scripted words and took control of them myself by turning them into a song.

This was amazing. Our conversations started to go like this.

Him: "Thomas the tank Engine mum. Thomas the Tank Engine."

Me: (in a rhythmic kind of way) "Thomas, the Tank Engine, Thomas the Tank. Thomas the Tank Engine. Thomas - Yeah! Thomas is a train, Thomas is a train, Thomas is a train. A cute little train - yeah!"

I found that he would start to look at my face and process what I was doing. He would smile and look expectant, and actually enjoy it. Sometimes as time went on, he started to join in.

I'd change the chant too, so that he would not make the chant into a new script. Maybe change the words, or the rhythm or the pitch or the speed... it made him sit up and notice and start to interact with me.

Progress report: Six months later: he still has scripts. But he doesn't repeat and repeat and repeat like he used to. Because his brain is processing so much better, he is able to use his own speech and think for himself. And as he does that, I notice a huge reduction in his scripting and repetition. I hardly ever have to chant any more. And I don't use the ipod much at all.

His own little world

This photo says a lot about Bright eyes at about the time he was diagnosed with Autistic Spectrum Disorder.

The fact that he is actually sitting in the frame with his brother and sister is quite amazing. For the entire year leading up to this point, it was a major issue to get him to be in a photograph with anyone else. Surprisingly, he loved smiling for the camera on his own, but when he had to be part of a group, he would yell, run away and resist fiercely.

See the way he is focused on his trains? He carried those around in his hands all day every day for months. One day we lost one of the carriages. It was a monumental disaster. He cried and cried. We ended up having to buy a whole new set just to get the same colour replacement.

Thomas the tank Engine was his whole world for about three or four months. He talked about it constantly. His first words on getting up and last words on going to bed were 'Thomas has six small wheels' or 'Gordon is number 5. Thomas is number 1. Henry is number 4'. (Correct me if I'm wrong here...)

We can't see his eyes in this photo, but typically he looked fairly glazed. He rarely looked right at people, but kind of 'through' them. I have a vivid memory of seeing him in the car, staring blankly at his trains, ignoring everyone around him. It was as though he was sinking into an abstract land, his own little world, and we'd never be able to get him out.

Slowing Down

Before we officially started with RDI, we took their advice about things we could try getting started on.

I've already posted about changing language - and it worked a treat. The next thing I tried to do was to slow down.

There is a temptation with a child with special needs to try anything and everything all the time. Surely something is bound to work. And you couldn't live with yourself if you didn't do the very thing that just might have some great effect.

The trouble with that with autism, is there are so many things that people suggest you could try. Here's a list: speech therapy, music therapy, auditory therapy, preschool, early intervention groups, physical therapy, sensory therapy, occupational therapy, playgroups, nutritional therapy, heavy metals chelation, cranial osteopathy, homeopathy, naturopathy. Then there are the programs: ABA, Floortime, Sonrise, holding therapy.

Balance all of that with the fact that there are just so many hours in a day and so many dollars in your wallet, and it becomes difficult to work out what to do.

RDI's theory is that autism remediation takes time, it happens slowly and the children need rest and routine for their brains to re-learn normal development. If parents are too busy whisking their children off to this and that, they can't spend the time they need teaching them, and they children don't have time to process what they are learning.

It's not just appointments on appointments and therapy on therapy. Life itself for the whole family needs to be slower. A child will not do well with RDI if their family runs at a frenetic pace.

This is probably the hardest thing I have had to face in terms of getting used to RDI. I have always gone at 130 miles an hour. I work hard and fast, and then I collapse. I like to schedule lots of things in. I like to achieve aims and goals. I like being busy.

It's been a challenge to put things aside, say no to commitments and make a conscious effort to have a more relaxed, less crowded life.

Things I have given up for now: my nappy business, writing another book, church commitments beyond service attendance and Bible study and having lots of people over. I have made deliberate choices as to what therapies are best value for Bright Eyes and just recently got rid of one group that was good, but causing a little extra stress each week.

My focus is on Bright Eyes, teaching him and giving him time and space to learn. There's time enough for the rest of it in the future. (At least, that's what I tell myself now... (: )

Prayer partners

I've always been a great believer in specific prayer. I've seen God give so many answers in response to prayers for particular things. And with a child who has special needs, it seemed ridiculous to not start praying for him early in the piece.

Once we found out officially what was wrong with Bright Eyes, I sent an email around to many friends and colleagues telling them the news and asking if any of them would like to join us in praying for him.

I am so grateful for the many people who said they would love to pray! Every month or so I send out a little update on him, some information on autism and some specific prayer points for the period.

It's been a wonderful boon. Last month's prayer point was about the struggle I was having getting his medicine* into him. It was a huge issue for us and causing everyone lots of stress. The issue has been resolved and we have found creative ways to hide the medicine that didn't seem obvious before the praying began.

This month's prayer points, in case you're interested, are for toilet training to continue and be mastered, and for Bright Eyes' gut and intestinal issues to resolve.

Already, in only three days, I've seen an improvement in his toileting. God is good.

If you're interested in joining the prayer email, let me know. Otherwise, I'll post the prayer points here when they come up.


*more on the medicine in the future

Declarative language

One of the first RDI principles I put in practice was to change my language.

In general conversation, studies have shown that about 80% of our speech is declarative. That means, we make comments or observations. We describe something. We point out something. We tell someone what we've been doing.

Examples: "Wow, look at that bird over there." "Yesterday we went to the beach." "That's a nice bag."

The other 20% of our general communication is instrumental - that is, we speak to obtain a response - typically asking a question or giving an instruction.

Examples: "What kind of bird is that?" "Where did you go yesterday?" "Pass me that bag please".

Often, though, when adults talk to children, the proportion of declarative to instrumental language gets reversed. We ask a LOT of questions and give a LOT of directions. We typically require immediate and specific responses from them.

Unfortunately ASD children often do not have the language or cognitive abilities to process lots of questions and instructions. People talk to them and get blank looks in response.

The RDI principle is to model normal language for these children - and keep to 80% declarative and 20% instrumental speech as much as possible, thus inviting rather than requiring a response. Secondly, to slow down, leave lots of gaps and encourage original thought.

So before, I would say to Bright Eyes: "What colour is that flower?" And sometimes I might get the right colour as an answer, but more likely he would resist answering and yell instead because he knew I was putting pressure on him.

Following RDI principles, now, I might say, "Oh wow - there's a flower over there," wait wait wait wait - up to 30 seconds - and usually he will make a comment back, like "red flower"or "big tree".

It was a real challenge to change the way I spoke to him - and to the other children too - and I wondered at first if it would make any difference. But even after a couple of days I could see him processing more, speaking more relevantly and clearly interacting better with me.