I’d like to tell you a story, it’s got all the things a good novel has, a villain called Autism, a hero named Burney, an adorable leading man named Bailey, chapters that will make you cry, chapters that will empower you and of course a happy ending.

This is Bailey’s Story.

Maddy

Buddha

Our second son Bailey was a gentle, placid baby with a fantastic smile and hugs to die for. A very intelligent child, he could read the numbers on letterbox’s at age 2, he could draw a perfect face on the chalk board and was able to tell you all about his family. His nickname was Buddha, because he was so placid and happy.

At age 2 Bailey started attending a weekly three-hour playgroup, over the year there was no mention of any problems by the teachers concerning his behaviour. The only unusual thing that happened that year was Bailey stopped wanting to have his photo taken, he would protest and object and in the end we would just let it go. Looking back there were other situations that occurred that I didn’t consider problematic but probably were symptomatic. One example was when I didn’t go on a Kindergarten trip to the farm with Nicholas, Bailey’s older brother. I decided not to go as it would be too hard with a toddler in tow, if I were being totally honest it was because I knew Bailey would be so naughty he would take up all of my attention. During this year he also began to pull my hair if I tried to carry him.

In the first week of December 2000 when Bailey was 3 years and 4 months old my husband was home on annual leave and was able to toilet train Bailey in three days. This was amazing compared to our older son who had taken over a year to train and was still having accidents at Kindergarten.

That Christmas Bailey gave his much loved dummies to Santa in exchange for a gift. Bailey loved his dummies and would often walk around with two or three protruding from his mouth at one time.

3 Year Old Kindergarten

In February 2001, now aged 3 and 6 months, Bailey started attending three year old kindergarten two afternoons a week, his older brother also began school the same week. During the first session of Kindergarten he began to show signs of a problem, he was aggressive towards all the other children, totally non compliant with the teachers and wouldn’t participate in any group activities. This surprised me as Bailey had been to this kindergarten three times a week to pick up and drop off his older brother for the two years prior to him attending. He was familiar with the teachers and the surroundings. Bailey also continuously requested to go back to his other playgroup from the previous year.

During the first month of 3 year old kindergarten the teachers recommended we take Bailey to see a psychologist, Dr Gillian Cameron, and have him assessed, we made two appointments. Dr Cameron was unable to establish the exact cause of Bailey’s changed behaviour, she gave us two possible causes. The first was that he was suffering from depression. This may have been brought on by the potty training, giving up his dummies, Nicholas going to school and himself attending kindergarten were the rules were fairly strict. Alternatively he may be Autistic, “yeah right” I thought. She arranged an appointment for a full assessment at Travancore, we couldn’t get in until September 27, 6 months away.

The following six months at kindergarten were very hard and Bailey regressed severely. He could no longer count or recognise any numbers, his pictures had become scribble and he refused to sit still, his speech was also limited. At first the kindergarten would call and ask me to come and pick Bailey up, sometimes after only 20 minutes, other times it would be after an hour or so. The kinder eventually asked me to stay for the sessions, only leaving for the last half hour to go and pick up Nicholas from school. Even the last half hour became a problem and eventually I was asked to take Bailey home with me. At the time this request was heart breaking as it was the only time I got to spend alone with Nicholas, who was having a very tough time adjusting to his first year in school.

I found one of the only ways to stop Bailey from hitting the other children was to introduce him to them in a very formal manner, “this is Olivia, she is new to our kindergarten”. This approach somehow made the other children more human to Bailey and he would not hit them once he knew their name. Bailey was starting to take over all aspects of our family life, he was very hard to get along with and stubborn. We would often go home early from family gatherings or we would cancel an entire day trip or visits to friends and family because he was such hard work.

The Assessment

On September 27, 2001 I took Bailey to Travancore for an Autism Assessment. Never in my wildest dreams did I think they were going to diagnose him with Autism, I thought they were going to tell me he was just a naughty boy and take him home! How wrong could I be. After an intense three hours the assessment was over and I was told, to my disbelief, that Bailey had Autism Spectrum Disorder! I was given a slip of paper with a phone number for the local council and they would send his assessment out to me in the mail. I was given no information on Autism what so ever, just a slip of paper with a phone number. I cried all the way home and when I told my mum she said “don’t worry, he’s just a little bit different, that’s all!”

I got on the computer the moment I walked in the door, searching for any information I could find on what Autism was, of course the worst case scenario is always the one you read about. The prospects terrified Lee and I, we were shattered, and we talked all evening about the changes we were going to have to make. Lee even said Nicholas was going to have to learn to care for his brother, this gave me the most pain I have ever felt in my life.

An Angel Called Burney

The following morning I got on the phone and started making some calls, immediately things started to move. The first person I spoke to was Burney Walker, the pre-school field officer with the local council. She gave me so much great information and she advised me to go to my GP and get a referral to a Paediatrician. She advised me that she would come to the kinder and meet with Bailey. I got an appointment with the Paediatrician who also gave me plenty of fantastic information and re-assured me that things were now going to get better for Bailey as he would start to be treated like a child with Autism, and not like a naughty boy.

My biggest concerns were about mainstream schooling and Bailey’s aggression towards other children. Many of the children in the three year old kindergarten group didn’t trust Bailey and several parents elected to send their child to a different session for the following years four year old kindergarten class. One of the parents refused to let her daughter come to Bailey’s birthday party “just in case she caught IT”. This was very hurtful at the time and left me wondering if he had done irreparable damage to those friendships.

Burney Walker was true to her word and came to every remaining session of three year old kindergarten. At the first session she said I was to go home, put on the kettle and have some time to myself, I can’t tell you how wonderful that was to hear. I had two afternoons a week back to pick Nicholas up from school where we could spend some quality time talking about his day. Burney also kept a log, writing all that had happened during the session. At the end of year Christmas concert Bailey was terrified and hid behind Burney at the very back of the room, no amount of cajoling could get him near the stage.

West Arc and the Two Gail’s

In January 2002 I had my first meeting with the therapists from West Arc, *the two Gail’s*. They ran through the type of program Bailey would be attending at West Arc and the aim of these classes. He would go once a week for two hours, yes, just once a week for two hours. There would be four other children of the same age and degree of Autism and the sessions involved shared play, board games, baking and show and tell. The shared play would involve the children waiting their turn to use a toy another child may be using and the show and tell encouraged the children to listen to others and talk to a small group. The children also did a small amount of outdoors play in the playground.

Skye Purtill

West Arc also arranged a weekly session for Bailey with Skye Purtill, an Occupational Therapist, who would be doing some sensory integration therapy. This session was one-on-one and involved different types of stimulation like getting Bailey to run an obstacle course and then when he was puffing get him to lay down and have a feather brushed on his limbs. Skye was training Bailey to have control of his own sensory integration, winding down once the excitement had finished. She also gave Bailey a *Weighted Lap Sack*, basically it’s a football sock filled with rice, Bailey’s was called Freddy. Freddy would be either laid across his shoulders or placed in his lap to help him centre his feelings. It worked a treat and on the way home from the first session with Sky we placed Freddy on his lap, within minutes he was asleep.

4 Year Old Kindergarten

Bailey attended twelve hours a week at four year old kindergarten, over three days, and was given an aid, Gene. Gene would sit with Bailey for all of the session and guide him in his play and learning. Bailey was not very keen on Gene, he called her nasty names and resented her “interfering” with his play.

Gymberoo

I had read that many Autistic children didn’t crawl and that this could hamper their development. This rang true with me as I could not recall Bailey being a big crawler, I think he just sat and played with his trains and then one day began wobbling about the furniture. I don’t have a single photo of him crawling so this may well be true. I enrolled Bailey for a forty-five minute weekly Gymberoo class. These classes are designed for toddlers, and are based around movement, music and using your imagination. In the classes Bailey would be required to climb, skip, jump, swing and crawl around the equipment, all the time pretending to be whatever the animal for the week was. The classical music playing in the background was very calming. At first these sessions were hard to tolerate as Bailey was so much bigger than all the other children and very naughty, I could have very easily said “this isn’t working, lets stop”. Brenda, the teacher, was completely sympathetic and fully supported me at each session, she never once told Bailey off or made me feel like a bad mother. Slowly Bailey began to show interest in the sessions and eventually he loved the classes and looked forward to going and learning to crawl like a dinosaur or roar like a lion and bark like a dog. At the end of every session the children sat in a circle to wined down, they would do show and tell and talk about next week, Bailey would often run away at this time, independently sitting still was his biggest struggle. These expensive weekly lessons paid off and towards the end of the year 2002 I began to see some great improvement in Bailey.

Swimming Lessons

Towards the end of this same year we enrolled the boys in swimming lessons. For the first time Bailey would be getting in a pool without mum, he hated it. At the first session he didn’t even get his feet wet, week two was better and by week three he was in the water. We were very lucky with the teacher, she was fantastic, so calm and showed an amazing amount of patience with Bailey. He also began to look forward to these lessons instead of fighting with me.

A United Front

One of the driving forces behind Baileys successful development was our united front. The kindergarten, West Ark and I had quarterly meetings to plan our strategy and we would all work on the same problem together. One of the biggest issues for Bailey was sitting on the floor with a large group of children, this was going to be a big problem in school if we didn’t address it immediately. We put in place a four-term plan, during term one Bailey was only required to sit on a chair near the mat. In term two he would sit on the chair with his feet on the corner of the mat. Term three saw him sitting on the corner of the mat and by term four he was sitting amongst the children wherever he wanted. He would even get up and to go to the loo and come back to the center of the mat. He still charged to his spot unaware of how many fingers he had trodden on, but he was on the mat. Success.

Five Majic Words

I’ve listed here the many physical changes to Baileys week, lots of activity, lots of change and lots of interaction with other children but we also changed his diet, NO MORE CHOCOLATE. Bailey was, and still is, a chocoholic and taking the caffeine out of his diet paid dividends immediately. He began to listen to what was being said and one of the most amazing things that happened was he started showing an interest in what others were doing. Bailey had never chatted to me, never come and shown me a drawing or told me a story. One afternoon I was making meatballs for dinner, he came up to the kitchen bench, looked up at me and said “what are you doing Mum?”. This moment in time is imprinted on my brain, I will never forget that moment or those precious words ever. I held back tears as I explained what I was doing, he pulled up a chair and I offered for him to help me. It was the most wonderful five minutes of my life, we rolled the meat into balls, coated them in flour and then in the breadcrumbs. They were the best tasting meatballs I have ever had.

Going Out

We made a decision early on to take Bailey to every place we could think of, no more staying home and cancelling family events. On Sundays we travelled to the city and went to markets and mingled with people. He didn’t like all the people and the open spaces or the noise, but he got used to it and eventually enjoyed the weekly trips out.

This didn’t always go smoothly and we had some disasters. One of the early and more memorable events was a trip into the city to celebrate the Chinese New Year. Bailey had been refusing to get in the car and been pretty obstinate. When we arrived in the city Bailey confessed he had taken his shoes off and left them at home, thinking we would notice and go back. It cost me a fortune for a pair of leather sandals at a local market.  The shoes were new and hard and Bailey complained about them soo much that in the end we asked Nick if he would swap shoes with Bailey?  He agreed, even though the shoes were a little small for him, we had to put band-aids all over Nick’s feet to stop him getting blisters.  But we were out and enjoying the Chinese New Year, nothing was going to stop us from “having fun!”.

During the August school holidays we decided to stay in the city in a hotel for one night. When we first told Bailey he said “no way” he was not ever going to sleep in a strange bed. We told him he could take his own pillow and that calmed him, but he was still adamant he was not sleeping in a hotel. Saturday morning and we travelled to the city and checked into the hotel. We then took the boys on a tram to the Melbourne Museum where we spent the day. That night we went to a restaurant for dinner, walked back through the city in the dark and when we got back to our hotel he slept in the hotel bed!  No problems at all.

The following day I took Bailey to a Bob the Builder concert with thousands of children, all noisy and excited, the stadium was massive and pretty intimidating. He was scared at first, holding my hand tightly and burrying his face into my leg but slowly, with lots of reassurance, he started to enjoy the concert and amazingly he didn’t complain once. On reflection he was fairly quiet over the weekend, for Bailey who normally was noisy and complaining, it was as if he was taking in all these new experiences. He trusted us when we told him it was going to be OK and that there was nothing to worry about, something very new for Bailey. In fact he quite liked being able to watch TV from the bath in our hotel suite. When he returned to kindergarten after the holidays Sue, the teacher, asked him what he did on his holidays, he proudly told her “I stayed in a hotel in the city”. So much had changed in 12 months.

Transition to School

During term three we approached the school about enrolling Bailey for Grade Prep. The school were wonderful and set up several meetings with the Prep coordinator, the kindergarten teacher, the two Gail’s and myself. One of the things we observed was that the school play music at the end of play and lunch times, this lets the children know they need to start going back to their classroom, the Kindergarten teacher immediately implemented this at the end of the outdoor play sessions. The school also offered for Bailey to do ten weeks of transition during term four, the normal transition time is four sessions.  Bailey went to school for one hour each week throughout term four, this helped him to get used to a classroom environment and he would be familiar with some of the children the next year. At the end of term four he also attended the normal four transition sessions with the other children starting school.

Years End

2002 was a huge year for Bailey and his development. He had attended 12 hours at Kindergarten, 2 hours with West Ark, 1 hour with Sky, 45 minutes at Gymberoo and a 30 minute swimming lesson. This was a very big change from the year before. We had gone no where as Bailey was so painful to take out, he would constantly ask to go home and he’d be very naughty if we didn’t do as he demanded. Bailey had been running the family.

By the end of his kindergarten year Bailey had made some major improvements, his speech had returned, he was showing signs of developing genuine friendships and he was far less obstinate and resistant to change.

I think that Baileys progress and improvement can’t be put down to one thing alone. It was a combination of hundreds of tiny interactions over one very intense and important year, from age 4 to age 5. The other mothers at kindergarten played a pivotal roll in his acceptance, they invited him to birthday parties and on play dates, regardless of whether their child wanted Bailey to come or not. This on it’s own showed amazing acceptance and helped Bailey to develop meaningful friendships with other children his own age. I can never tell them how much I appreciated their support or how much their tolerance and understanding contributed to Bailey’s development.

Starting School

During the 2 kindergarten years I had always found the advice from the teachers to be reliable and well informed and I trusted that they had my child’s best interests at heart. So it came as a big surprise when Bailey began his first days at school that several of the teachers I dealt with appeared to be ill informed and ignorant about Autism. I had always trusted the kindergarten teachers and the two Gail’s, they had never lied to me or mislead me and sadly several teachers from the school did both.

On the first day of school I discovered they had not put any of the boys from Bailey’s kindergarten in his class, the school had promised me that Bailey would have at least one boy from his kindergarten class in his grade. This was a real blow as we had all counted on Bailey being with familiar faces on his first day at school. I immediately spoke to the school’s special needs coordinator about my concerns and he pretty much blew me off as being an overly concerned mother.  Neither the teacher or the *special needs* coordinator had not involved in any of the previous years group sessions so they had no knowledge of how hard we had worked on getting Bailey ready for school. 

The school also appeared to have no plan in place for Bailey and no one from the school asked me or the kindergarten or the Two Gail’s for advice on where we had been heading with regard to Bailey’s development. Neither the teacher or the classroom aid knew very much about Autism, they appeared totally unprepared for his arrival. To say that this came as a shock is an understatement.   We had been liaising with the school for a good six months, surely they had some strategy in place? It appeared they were going to be learning as they went along, this gave me no confidence at all.

Another issue I encountered immediately was that they treated Bailey differently to all the other children.  The teacher made Bailey feel uncomfortable, he just wanted to be left alone and not singled out all the time for *special treatment*. He was often singled out to hold the teachers hand when walking in a class group and he wasn’t being encouraged to blend in, such a change from the year before when he had his aid watching but encouraging him to do what the other children did.

One of the main concerns I always held was how Bailey would cope in the playground with over 600 other children. Outdoor play had always posed problems, even with supervision Bailey was aggressive towards other children, his social skills were terrible. I spoke to the teacher and the special needs coordinator about allocating the classroom aid’s time to the playground. They felt this was un-necessary as the grade 6 children were all going to be “buddies” with the prep children and they would sort out any problems, what a total underestimation of Bailey’s problems. I let it go and was not surprised when, four weeks later, the special needs coordinator rang to ask if I would mind if they allocated his aid to playtime support, I just smiled and agreed! It felt great to be vindicated and that my instincts about Bailey’s needs were spot on.

Bailey encountered a few teething problems during term one. He had a boy in the class who didn’t like him and didn’t mind telling Bailey he didn’t like him, this was very distressing for Bailey and he clashed with the boy often. Eventually the teacher took the boy to one side and explained what autism was, not very well unfortunately. The boy then began to call Bailey horrible names, teasing him and generally being very unpleasant. It took six months for this issue to abate.

For the most part Bailey enjoyed school and my fears of him running home the moment things got stressful were unfounded.

Diet

Bailey often complained of stomachache and often had diarrhoea, our paediatrician had told us that this was very common for children with autism but didn’t suggest that diet change would help in any way.  About a week into his first year at school I explained to the teacher that Bailey had been suffering rather badly that morning and could possibly need to go to the loo a little more often that day.  She immediately asked “is Bailey lactose intolerant?”  I said I didn’t think so but she insisted that his symptoms were very much like her own, and she had been lactose intolerant for some time.  She recommended a cows milk that had the lactose removed. Not one to turn my back on good advice I immediately changed Bailey’s diet to include the lactose free milk and we avoided as many dairy products as possible, cheese, yogurt and hardest of all ice-cream.  Within days of this change Bailey had no more tummy upsets. 

One of the nice side effects of this change meant Bailey didn’t wake up with tummy ache and there for was not grumpy in the morning.  If Bailey started the day grumpy it was very hard to get him out of the bad mood, however if we were able to start the day happy he often stayed that way all day.  This was in deed a great change.

Parent Support Group

Sounds good doesn’t it? The Parent Support Group is not what it seams, it’s a meeting with the teacher, the classroom aid and me. We have two PSG meetings a year to talk about Bailey’s development, areas of concern and what we can all do to help in these areas. The first PSG report was basicaly a list, a dozen areas of concern.  It appeared to state the obvious, Bailey is Autistic. No mention of any positive developments just lots of negative problems with no solutions.

The five short term goals were very optimistic and a bit naive on the teachers behalf. They were really long term goals, like develop the ability to take turns and develop social skills, all things that take a long time to learn and develop for an Autistic child. I felt a bit disappointed with the meeting, I think this was because I was comparing it to the planning sessions I had with the kindergarten and The Two Gail’s which really focused in on one area to work on at a time. This had worked so well the year before but all of a sudden it appeared that Bailey had hundreds of problems and I felt very overwhelmed not knowing which one to work on first.

Needing some good advice I called Gail at West Arc and asked her what she thought I should do, she offered to come to the school and meet with the teacher and the aid and see if she could help in some way. In March we had a meeting with Gail, the teacher, Bailey’s aid and myself. Gail read the PSG report and then made positive and very practical suggestions on how we could help Bailey to accomplish these goals. I felt so much better after this meeting and the teachers did too. Both the teacher and the aid enrolled to do a course to learn about Autism, this was going to help a lot. Gail had also put in writing very specific strategies on how to get Bailey to do what was needed. Things were looking good again.

Classroom Strategies

One of the new problems that had developed was after playtime, Bailey was very wound up and found it almost impossible to calm down enough to concentrate on the class.  Gail suggested a routine to help Bailey unwind when he came back to the classroom after playtime and lunchtime. Firstly he would go and wash his face with a cool cloth, have a cold drink of water and then sit in the reading corner and read one picture book. Once he was calm and focused he could join the class, this usually took just a couple of minutes. Bailey soon moved from a book to a maths sheet as he was showing great enjoyment in doing maths. Sky’s lessons were working and Bailey was soon able to calm himself and unwind.

Skye’s weighted lap sack, Freddie, was also re-introduced into the classroom and initially worked well. Unfortunately the teacher showed very bad judgment when she allowed Bailey to take Freddie outside at playtime where it was used as a tug-o-war toy, bursting and spilling rice all over the playground. I was annoyed to say the least as this was a very useful tool that could have been used to help Bailey and instead she treated it as a toy.

Mat time was still a big issue with Bailey and he showed little respect for others around him, often stepping on fingers, bumped into others or getting under the tables rather that sitting still to listen. Because Bailey struggled with concepts that he couldn’t see he couldn’t understand exactly what *personal space* meant, so we introduced a hula-hoop. Bailey would sit inside the hula-hoop and he could see just how much room he needed to leave between himself and the others around him. This had the desired effect and Bailey began to understand what personal space meant.

Bailey was still not sitting still though, and so a new prop was introduced, the carpet square. When it came time to sit on the mat Bailey would go and get his carpet square and choose a spot, he’d then sit on his square on the spot.  The mat proved to be far too portable and eventually it was scrapped when he began changing the spot mid session.

Intellectually Bailey was excelling, he learned to read without a problem and in the September PSG report the teacher commented that Bailey had developed a great love for literature. His number skills also developed very quickly and he was enjoying maths a lot.  Handwriting was a problem. Bailey wanted to get all the work done very fast and so he rushed most things, this was a shame as the information was usually correct just written down at such a pace it was very difficult to decipher.

The *show and tell* sessions from the previous year at West Arc began to show how beneficial they had been in making Bailey comfortable talking in group sessions.  In fact Bailey became so comfortable in group sessions that he began to dominate question and answer time, calling out the answers before anyone else could get a chance to speak. It was almost like he couldn’t help himself and the answer would just blurt out. This began to annoy the other children and eventually he was asked not to answer questions unless specifically asked by the teacher.  He was not happy!

Years End

By the end of his first year at school, now aged 6, Bailey had developed all of the reading, writing and mathematical skills expected of a child his age, his social skills were developing and he no longer required supervision in the play ground.   Bailey still had many areas that needed to develop and improve, but it was a good year, much better than I had anticipated.

For the first time in a very long time I could see some light at the end of a long dark tunnel, I could feel hope that Bailey would be able to lead an independent and rewarding life. Once again so much had changed in 12 months and we were all looking forward to what lay ahead in his second year at school.

Lets Get Positive

After Bailey was diagnosed all the articles I read were pretty much doom and gloom and I heard phrases like “oh dear’, “you poor things”, ”put him on med’s”, “he can always go to a special school” and nothing positive.  I wanted to hear someone say to me “ok this isn’t great news but I have some positive ideas for you”. 

In writing about Bailey and his journey I hope that you will get something positive out of it. Just giving something new a try and seeing if it helps gives hope and that is what I would like to give to you. 

Recently I have read a few very posative stories written by parents of autistic children and I even found a web site with the title “Talk About Curing Autism”.  One of the best things I read on this site is “Some of our families have been told to put their child in an institution, we’re hoping for Harvard”.  Now that’s what I call positive thinking.