On a bad day...

When Bright Eyes has a bad day, he often looks like this. His face is slightly swollen, his eyes seem bleary. He's certainly not 'bright'. I wonder what makes this happen - I wish I had more answers and solutions without having to go on extreme diets. GF/CF is bad enough.

Homeopathy

I haven't spoken much yet about the homeopathy that we've been exploring.

I began seeing our homeopath at the beginning of the year when my daughter was still coughing an unexplained bark, a year and a half after she started. We went through the children's hospital system and tried everything we could find to fix it, with no success.

A month of homeopathic treatments, however, and she was pretty much cough-free. I was amazed and asked "Can you do anything for Bright Eyes?"

She said she was still learning about autism but was willing to give it a go, so a few months later, we began a few doses of various potions. Up until two weeks ago, I would have said I wasn't sure any of them were doing anything, but the latest one has had some good effects.

For a start, his bowel movements have become normal. This is amazing for a child who has had squishy, icky, stinky poos for the whole of his four years. This is the effect that is easy to quantify because I can see it in his nappy.

Harder to prove are his improvements in comprehension and processing. He can answer more questions, he is expressing more opinions and he can process logic much more effectively and see connections between things that he missed before. I can see a lot of improvements even in the last two weeks (in between cranky periods) which I think I can put down to the homeopathy, in conjunction with RDI.

The homeopath is also the main encouragement for Bright Eyes to go on the SCD diet. I am currently still trying out recipes. Getting a reasonable substitute for crackers is my big problem, but we'll see how we go.

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.

I'm over it all today

Sorry about all the negative posts. But this is going to be another one.

I am just really tired of all of this.

Everything I do with him, I have to think so hard about. The smallest request can turn into the biggest confrontation in ten seconds unless I am supercareful.

He still won't eat properly. He's still in nappies. He still sleeps in our bed. He still talks all day about stuff that's in his own head. He bosses. He won't get on with his brother. His voice is loud and demanding and stressful.

When I change his nappy, he has to put the clean nappy over his head first, before putting it on. Then he has to put his pants on over his head before putting them on. If I miss a step he has an anxiety attack.

RDI is really great but it's challenging and tiring to have to change so much of what I do and how I speak and how I relate. I need to think so carefully all day about how things can work. Every time I get feedback from our fortnightly review, I think, "How can I do this better? How can I remember this all day tomorrow?"

I've never naturally been one of those people who loves little kids and all the messy stuff that goes with preschool. Small children are hard work for me. Looking after them doesn't give me energy like it does for some.

Yes, of course there are good things. He danced today when we put music on. He's using more appropriate language every week. Overall, he's improved amazingly in 9 months.

But I'm tired and I'm sick of it all today. And I'm having a big whinge.

The Results

In a nutshell, what came out of the tests was: -

1. Bright Eyes is low in zinc and high in copper. The normal body ratio is 1:1. His is 2:7. This stops his brain working properly, and has an impact on his gut as well.

2. He has parasites in his gut, which means his digestion doesn't work properly, which also affects the brain.

Look, there are heaps of big words like undermethylation, gut dysbiosis, pyrolureiria that our doctor likes to use, and I'm sure he understands them properly. I actually do understand them when I read the literature, but I'll be blowed if I can report it back so that anyone else can understand it too.

I like to know what I can do about it all. So here's my list of things we have to do for him.

1. Gluten-free and casein (milk protein) -free diet. (His faulty gut wall can't digest these proteins and they end up floating around the body, acting like morphine. So the poor little fellow was continually drugged out by the very food he was eating.)

2. Digestive enzymes with every meal. These assist in digestion and help the nutrients in the food to be broken down and absorbed properly.

3. A completely foul mega multivitamin dose every day. It's mixed up specially to increase zinc uptake. (Apparently it's not as simple as just giving zinc drops every day.) This is a nightmare to give him. He won't swallow a capsule and the stuff tastes worse than bile. I have to mix it in a masking fluid and then try to hide that in vegemite, tomato sauce and juice throughout the day. Even then, he doesn't get the full dose.

4. More Omega-6 oils. Thankfully these work through the skin. Trying to get more medicine into his mouth would be a disaster. Every night I rub the oil from two evening primrose capsules into his body.

5. Avoid high copper foods (mushrooms, dried fruits with sulphur, oysters). That's easy. He won't eat most of them anyway!

6. Avoid foods with artificial preservatives and colourings in them. Again, he can't eat most of these anyway because of the gluten and dairy.

7. Filter drinking water (too much copper in Sydney Water apparently), avoid long baths and no swimming in chlorinated pools. The copper can get in through the skin.

8. Increase his intake of proteins throughout the day. This is hard. He'll only eat ham or sausages (gluten free of course!).

It's a lot to do and it can get very wearing preparing his food and making sure he never sneaks doughnuts, like he tried to today! However, I know that the difference in him since we began all of this is incredible.

My doctor is part of the Mindd Foundation who are promoting this approach to treating autism, ADD, dyspraxia, dsylexia and other related conditions. If you are interested in knowing more about their medical approach, click here.

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.

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... (: )

Eggshells aren't people

About four or five months after the unofficial diagnosis, I had read enough about what ASD was. Now I was ready to find out what I could do about it.

In an image that stuck in my brain, the unhelpful psychologist we went to see likened people to eggs. Neurotypical people were eggs - shells nicely filled with yolk and white. Everything working properly inside. But autistic people were like empty shells. On the outside they looked normal -ish, but inside there wasn't a lot that was normal.

His idea of autism treatment was to teach the empty little shells skills so that they would appear to be real eggs, even though they weren't.

A lot of the treatments that I read about propounded the same sorts of ideas, although not with such culinary imagery. It seemed the accepted way to help autistic children was to teach them 'skills' or 'rules' they could remember and then apply to every day situations.

To me, it seemed like a sorta-kinda-paste-on solution. And it wasn't a solution I was prepared to accept for my son.

RDI (Relationship Development Intervention) was not the first program I looked at, but once I read about it, I heaved an enormous sigh of relief.

Here, finally, was a doctor who understood autism at its core and who wasn't happy with the 'teach skills' solutions. He taught autistic children for years using the accepted methods but was not convinced that the outcomes were all they could be. He wanted to go deeper and find a solution that would have a 'normal life' as an outcome.

If it worked, this was the sort of program I wanted Bright Eyes to be part of. And if it didn't work, surely it couldn't be any worse than the therapies that wanted to treat him like an empty eggshell.

Finding some answers

Thank the heavenly Lord above for the wonderful gift of.... the internet!

I wasn't much of a net junkie before Bright Eyes' diagnosis, but now it's my first port of call for everything.

It only took a couple of weeks before I realised that Bright Eyes' treatment was going to be something I would have to handle myself.

I decided to do what the doctor had told me, so first off I rang the Autism Association, who were not particularly friendly, nor particularly keen to help me through what I should do next.

After that I went for the speech therapy. We went to some lovely sessions with a very sweet young lady who showed me how to do things like pictures and sign language and choice boards. "Show him a picture of the red t-shirt and the blue t-shirt and let him choose which one he wants," she said. It was too bad that he ran away screaming if presented with a choice. Besides, the thought of taking photographs of everything in his life, laminating and velcro-ing them, getting the right ones out at the right time, and then trying to stop him chewing and bending them just made me exhausted. I decided I'd come back to speech therapy.

In the midst of all of this, I went for a second opinion, on the urging of my father in law. The second paediatrician was a lovely lady who agreed wholeheartedly with the first paediatrician, adding this memorable phrase: "Well, he's got atrocious social skills,"* but, for another $200 or so, no additional advice on what to do to manage him, except to go to a psychologist specialising in ASD.

"He's really good at practical solutions for challenging behaviour," she said.

So with hope in my heart, I drove 75 minutes across the city for a two hour session. This turned out to be him talking at me for three quarters of the time, telling me all about autism and what autistic children typically do. But I had already done the research! I knew all of that. I wanted answers for my particular problems with my child.

His ineffectiveness** was proven to me when I went to leave with Bright Eyes (whom he had briefly looked at for about two minutes, and who then watched videos in his office for the two hours). But Bright Eyes found some steps and wouldn't get off them. He started to scream loudly and refused to come with me. After about 10 minutes of me trying hopelessly to get him to move, with the psychologist looking on, offering no help, I started to sing, "Let's walk together, let's walk together," whereupon Bright Eyes took my hand and came calmly with me to the car.

It was a depressing moment. I realised that I would have to be the one who found the answers and judged the treatments. I would have to go looking for real help that would actually work.

And so I turned to the net, obsessively reading any site I could call up that could give me some hints on the causes and the solutions for autism and ASD.




*I am being a little unfair perhaps... she said plenty more good things, but that comment was indelibly imprinted on my brain! It's true - he showed lots of atrocity in her office, but it's not what a loving, optimistic mother wants to hear unfortunately.

**I should add that this psychologist showed himself to be a man of great principle when he refused to accept my payment for his session because I wrote expressing my dissatisfaction with him.

Thanks... but what now?

The paediatrician was a nice enough man. He knew his stuff, and he made a good diagnosis. But that's pretty much where it ended.

My question was obviously, "well, what now?"

And he didn't have too many answers.

He said we should contact the Autism Association. He also said that speech therapy would help a lot. And then he did tell us that we'll need lots of support.

And apart from getting a detailed report about Bright Eyes's presenting symptoms and the basic diagnosis, that was basically it - for the lovely cost of $300*.

I felt a little ripped off - and I still do. If my child had been diagnosed with cancer, diabetes, or anything else that has mainstream tried and tested medical treatments, I would have been given a blow-by-blow description of what would happen next, what could possibly happen, what possible prognoses there were for the future.

The paediatrician could answer no questions about Bright Eyes' future. And he wasn't particularly interested in what kind of treatments there were out there. He was concerned about us, which was nice, but I was more interested in my son than myself at that stage!

I felt alone and floundering. What were we supposed to do now?



*At the beginning, costs associated with doctors and therapies used to shock me. Now I don't even blink if people start quoting four figures (of course it doesn't necessarily mean that I'll pay them though...) The word 'autism' is like the word 'wedding' in terms of its impact on cost prices.