Galen was a beautiful, placid baby; who ate, slept and laughed, counted on his fingers and looked into my eyes when I called his name or tickled him. He could wave, say goodbye Daddy, and loved playing with his pull-a-long puppy. He had his regular checks at the local baby health centre and visited our local doctor for anything that was beyond the maternal health sister.
Galen had his first immunisation at the community centre and reacted badly with a continued temperature and crying that lasted several days. We attended our local doctor for his second and third injections but the result was the same each time. Galen was late for his measles, mumps and rubella due to colds and ear infections and was nineteen months old by the time he received them, the reaction when he did was horrendous. Swollen red skin, high temperatures and endless crying. His temperature eventually returned to normal and the crying stopped. What I did notice however was that his bowel movements had changed dramatically; constipation and diarrhoea were now present. At twenty five months of age he received his last triple antigen as well as his hib, not long after we started to notice what we can now term developmental delays.
During Galen’s second year we noticed he had stopped saying many of the words he had learned, we decided in our wisdom that he had become bored with words and that he would come back to them or learn new ones. By the age of three he started turning his toy cars upside down and spin the wheels around or spin himself in circles contented to do this for hours on end. It became very noticeable that Galen preferred his own company and whenever we ventured into his space he would scream or cover himself with his doona, cushions or indeed anything that was soft and covered him fully. We watched intently as he started walking on tip toes and flapping his hands or lining up his toys or food such as chips in perfectly straight rows, not knowing that this was indeed part of the criteria that defines autism.
I had taken Galen to a general practitioner for a regular check up and asked him his opinion on Galen's lack of speech and his strange behaviours, I was told that Galen was just a slow developer and would be fine. The doctor didn’t seem to think the hand flapping was anything to worry about but something niggled at the back of my mind and at the next visit I asked to see the travelling specialist. An appointment was arranged and in due course Galen was seen by a visiting paediatrician, six months later we were told our son was presenting a condition called ADHD and would need to be placed on a medication by the name of Ritalin. The strange thing about this was that my middle son, (who had been born twelve years previously) had been diagnosed ADHD by the Children's Hospital and on Ritalin for most of his life, had none of these strange behaviours that Galen displayed.
Now I know that many children are diagnosed with this complaint, even some children that I would consider overactive rather than hyperactive, this however occurred over sixteen years ago and Ritalin wasn’t just the run of the mill medication in my opinion that it seems to be now.
I read back over all the information I had collected on Ritalin over the years and then found some new data over the internet. Something didn’t add up and I, with my mothers’ instinct, knew that this very serious drug wasn’t right for Galen. I had the prescription filled but I held off giving it to him.
We made a decision to ask our GP for a referral to a hospital and after waiting the required weeks received the appointment and attended the clinic. The doctor there did not display who she was or what position she held but as it was to be an assessment by several different personnel, I didn’t worry too much at that stage.
The first doctor told me that Galen would under go a speech test and then a cognitive test, but not really explaining anything fully. I felt by the time these tests were finished that I had been through a maze of something that I didn’t understand at all, the funny thing was it all only took about an hour.
At the end of this testing period the initial doctor took my hand in hers and spoke to me as though I were three years old with English as my second language. “Your child has autism, we will be in touch soon.” So lucky for me that after the four weeks of trauma that followed those few words I didn’t wait for her to get in touch because she never did. The issue that in retrospect was frightening to me, was the fact that nobody even asked if I knew what Autism was.
In the weeks that followed I sat like a vegetable, not able to take anything in until a friend telephoned to tell me about a documentary to be screened on SBS, “The Nature of Things,” a series of specials put together by David Suzuki. This one was entitled “The boy who couldn’t play” showing an Applied Behavioural Analysis (ABA) school in Canada and the wonderful way they were teaching autistic children to communicate and function. It was like a light at the end of the tunnel for us, there was a way to help our beloved son, there was much to learn and apparently not much time to learn it in. We have been told by many experts in ABA that the earlier you start the better.
We rang Autism Victoria from a number in the telephone book and found that they had a list of Paediatricians who specialised in autism and went to see the one on the top of the list.
The Paediatrician assessed Galen’s developmental difficulties by taking information from us, observing his behaviour and examination. On a second visit, a more formal developmental testing method was used to ascertain Galen’s overall functioning abilities. This was to be followed by a complete formal assessment.
Galen was referred to a major medical centre for an assessment which was to be carried out by a team consisting of a Psychologist, a Speech Pathologist and a Paediatrician. The Psychological tests given were the Merrill-Palmer Scale of Mental Tests and the Childhood Autism Rating Scales. Galen then underwent an EEG to check for Epilepsy. Finally the Speech Pathologist tested him for receptive and expressive language.
The team of clinicians were open to discussion at all times and explained very fully what they were defining by the tests. The purpose of formalities required are to access services in early intervention.
My husband had been reading extensively about an alternative therapy using flower essences and we telephoned an essence practitioner of impeccable reputation to see about having an essence made for Galen. The practitioner likes to speak to the parents and find out exactly what is wanted by the parents and needed by the child. We answered all the questions and left the rest to the practitioner. It was only a few days later that we received the flower essence in a dropper bottle. It seemed tasteless and Galen drank it from the dropper quite easily every day for seven days, we waited for something to happen and we were not disappointed.
We had previously told his three year old kinder teacher he was to be put on Ritalin but had never told her of the change in plans. At the end of the first “flower” week I was pulled aside by the teacher who just had to tell me about the wonderful change the “Ritalin” had made to Galen. She didn’t need to tell me though, we had seen, or rather heard enough for ourselves, he was talking. Just single words at first but clear words; words that we hadn’t heard for so long, words that gave us hope; words that gave us the impetus to keep trying to find ways to help our son to communicate with us and the world around him. Galen’s teacher was shocked to hear a natural therapy could do so much for him but seeing is believing.
I had joined a self help group in a nearby town made up of mothers in the same situation as I, who had no real knowledge of autism but through this group and our speech pathologist I heard about an Autism Victoria seminar on Applied Behavioural Analysis (ABA). I attended with my eldest son’s fiance, a primary school teacher with Special Education studies and made a start in my bid to understand this tragic condition.
We came home armed with new knowledge and with her training as a teacher she wrote our first ABA program for Galen.
This was to be the beginning of an arduous and challenging time for her, Galen, and indeed the rest of the family but when after only a few weeks we could see an understanding of certain words and a growing vocabulary we took heart and knew we were on the right track. I will be eternally grateful to her for the many hours she diligently put in to Galen’s program. It was physically and mentally demanding and many times I would have to leave the house, fingers in my ears, so as not to hear the screams of this small child fighting to stay in his world of isolation.
ABA is the single best weapon in this fight to keep our children in our world and there are many people who have been in the same boat willing to help you. The Autism Behavioural Intervention Association (ABIA) is a body of parents who have a wealth of information, list of therapists, consultants, an electronic billboard and a comprehensive library.
If like me you can’t afford a consultant there are still ways to use ABA with your child. Even though they recommend students as therapists it still costs and as I live on the edge of rural Victoria there is travelling involved. The recommendation is for forty hours per week, which would be wonderful but this is also an element of consideration when you have other children to care for, especially if you need ABA for more than one of your children. ABA is still the best way to go.
Attend some workshops, (for information check with ABIA on the internet for contacts in your state), find friends or family to help, if this is not possible you can still do it yourself.
There are two excellent books available “Behavioural Intervention for young children with Autism” by Catherine Maurice, Gina Green and Stephen C. Luce. This is an extraordinary manual for parents to start with, easy to follow (probably because Catherine Maurice is the mother of two autistic children.) The second book is “A Work in Progress” by Leaf and McEachin. I am using this book now and have found it full of great strategies and also very easy to understand and follow. Keeping your child actively engaged in 1-1 therapies is so important.
Galen was given access to a Speech Pathologist one half hour per fortnight and three sessions of local kindergarten per week. The kindergarten he attended had few resources and little knowledge of autism. On arriving one day to collect him, I found him outside the kindergarten, on his own not far from the highway. None of the authorities seemed very concerned by this and I asked for him to be transferred to another local kindergarten. I decided after a term at the new kindergarten I would remove him completely. It seemed to me except for when his new aide, my son’s fiance was with him he was not being integrated with other children, which was the whole reason for him being there.
Living on the boundary of rural Victoria you have to travel for hours to access any of the local services in the country and yet are denied access to many of the services in Melbourne. There are many facilities to help autistic people within the perimeter of the city, all shown in glossy brochures but what they don’t tell you is that you have to go on a list and wait for up to a year for your child to be selected to attend.
We had also discovered that he loved Walt Disney movies and allowed him to watch many of these, in doing so we also noticed that he was not only picking up new words but was discerning emotions and displaying some of these in more generalised terms. Later when emotions were introduced into his program, we found his perception of sad and happy were correct and that he was aware of when people were displaying them to him.
It was around this time that I discovered Dr. Bernard Rimland's website at the “Autism Research Institute.” The information on this site opened up all sorts of possibilities.
After reading and digesting this information we decided to try Dimethylglycine. We sent to a food supplement wholesaler in the USA via the internet and received the DMG a few weeks later. Nothing short of fabulous, our young man not only recognised us and spoke to us but we had some eye contact.
There was also a lot of information about nutrition and the advantages of vitamin B6 and Magnesium. Now Galen was a toast and Vegemite boy with hot chips thrown in for variety, not a great deal of nutrition in that. Again we sent to the USA, for a syrup mixture containing B6 & Magnesium. The results were astonishing, not only did he begin to seem more balanced but he was coming into our space and joining the family in many different ways. He also started to eat different food groups.
The mixture also contains: Vitamins A, C, D, E, Niacin, Pantothenic acid, Biotin, Zinc, Manganese, Selenium and Folic acid. (One of the things Dr. Rimland states is if Hyperactivity seems apparent then more folic acid is needed. We add 3x 500 mcg tablets crushed into the mixture.)
It was about six months later we also decided to add colloidal minerals. This is a perfectly safe addition to any diet as it replaces all the trace elements that have been depleted from our soil and has been used the world over for seventy years.
On his website Dr. Rimland also had a list of books to be used as resources, under the heading “Recovery from autism is possible”, I found a book “Fighting for Tony” written by Mary Callahan, Tony’s mother. In her book Mary tells how taking Tony off milk transformed him from autistic to normal; I took Galen off milk the next day. We didn't think there had been any real change so by the end of the second week I put milk back into his cereal. We had in fact reduced many of his stims and it was hard to believe the change putting him back on milk had made. He was hand flapping, flicking his fingers, toe walking and spacing out. We then tried lactose free milk... still bad. Soy milk did the trick however and he improved steadily again. We later found out that it isn’t the lactose in milk that Galen was allergic to, it was the casein, a protein in the milk. I must add here that removing dairy products from Galen’s diet didn’t stop all the stimming but it did minimise them.
Some months later I read about the protein in wheat (Gluten) also causing allergic reactions in autistic children and Galen having suffered from bowel problems since two weeks after his last immunisation seemed to fit the criteria. We eliminated gluten from his diet for two weeks as we had the casein but found no difference in his behaviour or bowel movements so replaced it again.
I started looking for books on or about food intolerances, there were many that fitted that description but they were either so basic that I learned nothing new or so medical that I didn’t understand them. I attended a seminar at the Royal Children's Hospital to hear a Dr. Kotsanis speak about “Leaky Gut” and learned that to be gluten free you must eliminate all gluten for at least a year; no wonder removing it for two weeks did nothing. That same week I heard Paul Shattock from the UK based Autism Research Unit speak about the research being done on the theory of autism being a metabolic disorder.
Our next venture into the unknown was to send a urine sample for testing to Paul Shattock at the university of Sunderland in the UK. These tests are to determine whether or not there are peptides in the blood. (more about this in the section on ARU.)
Despite all the lovely glossy brochures about the Early Intervention Centres in Melbourne, we could find no placement for Galen. I telephoned all the centres closest to me and door knocked others miles away, to no avail.
Galen was four years and one month when he was diagnosed at Monash he was five years and five months when he was given a place at “Coverdale” Early Intervention Centre. In great desperation, I telephoned Western Autistic Centre in the July of Galen’s fifth year and spoke to a lady, who, after hearing that we had no intervention for Galen in our area suggested a home visit. Two weeks later Jenny found a place for Galen at an Early Intervention Centre in Preston. Galen loved it at “Coverdale” and with the care and attention he received from the teacher and her assistant, he thrived. This was a much better solution for Galen as they had the knowledge of how to deal with autistic children and parents that were holding together a very fragile family. Our last day there was very sad for me, I had made some good friends and had received a lot of support.
During Galen’s last weeks of “Coverdale” we had been travelling to Mentone each day for fourteen days to attend “Tomatis Auditory training” with Peggy Brunet of the Swiss French Cottage. This is a system that was developed over forty years ago by Dr. Alfred A. Tomatis, a French oto-rhino-laryngologist. Galen had headphones placed on his ears, (something I thought would be impossible), and listened to music. Two days later I read aloud some of his favourite stories which were then added to the tape. After the two weeks training, changes in Galen's speech were so noticeable and his understanding of the requests we made of him increased tenfold.
He continues to improve. My eternal thanks go to Peggy Brunet and her intelligent approach to working with children like Galen. After the ABA sessions that are a tiring but very necessary part of Galen's day, Peggy’s non intrusive technique during the auditory sessions helped Galen to access the training with a minimum of fuss.
This change in Galen’s routine made it difficult to get him to sleep at night, we had never had this particular problem before and weren’t quite sure how to deal with it. We tried singing, reading and cuddling him, we ran out of idea’s in the end. (This was before I had heard of melatonin and valerian) I was shopping at a local centre and saw a second hand papasan couch (Japanese style cane) for sale, it was oval shaped and of a good size so we took it home and exchanged it for his bed; we’ve never had a problem since and he sleeps all night.
Rigid routines were one of the first strategies suggested to me because autistic children do not cope well with change. If I called in to see my parents and they weren’t home Galen would tantrum, If I took him shopping and we had to go to a different shopping centre from our usual he would scream.
I realised very early on that there would be changes all through his life that we couldn’t do anything about and so we should be preparing him for those. I thought carefully about what changes I could make to his routine at home. I moved his bed, then I moved his books, just little things but considering he was going to tantrum anyway he may as well do it at home first. Later on I changed the routes we travelled on gradually changing things outside the home as well. It was surprising really how quickly he got used to me changing things around on him, it became a game to him after a while.
He is now very flexible and it seems, secure in any surroundings but especially at school where so many changes take place. This really makes life easier for him and the teachers. It worked for us, so it is possible.
Towards the later part of the year, his ABA therapist at home and I took part in a workshop held at a specialist school which have ABA consultants and a team of volunteer ABA therapists on staff. I was impressed. The consultants have many years of practical experience as well as immense knowledge and don’t mind sharing it. I was hooked, finally I had found just what I had been searching for. Galen started school in January 1999 and my daughter in law started working there voluntary at the same time and then was employed as an ABA therapist/Teacher Aide full time. It is a huge distance to travel each day, but at that stage it was the only specialist school that has an ABA program in the state of Victoria.
The teachers at Galen’s school were committed and caring, this you can see and hear everyday while walking to and from the classroom.
Galen’s teachers and aide are always learning new programs to implement and the children seem happy and secure; growing in every way. I initially worried about Galen picking up even more autistic traits at a special school but realise now that he would not have coped, even if he had been carefully integrated slowly into a “normal” school.
Galen’s school/ home ABA program saw myself and his teachers working in tandem on all aspects of planning and implementing objectives. There are in every school, problems that arise, but as part of the team of therapists I am able to communicate these and as a team we found solutions. Meetings were held at the school and we determined with the supervision of the consultant what Galen’s goals should be and the best way to achieve them. This was a good system with communication, perseverance, tolerance and always with the child's welfare in mind.
The question of immunisation had to be addressed when I enrolled Galen in school. I believe that immunisation brought about the physical and mental changes in my child. Doctors have not been able to give me any real answers so I took Galen to a Naturopath/Homoeopath and had a vega test done. This test showed that he had some Meningen still in his body, a sign that he had once suffered Meningitis. I would never had equated the two, if not for a meeting shortly afterwards with a lady worked as typist for a researcher doing work on the effects of meningitis after immunisation in autistic children. Who knows, perhaps it is one of the links between autism and the metabolic theory. The research that is now being conducted all over the globe has reinforced that feeling. The school however were great, once they knew my objections and why, I was never pressured or made to feel threatened in any way.
I had during this time been visiting a chiropractor who used muscle testing to find out why I was troubled with headaches and I decided to take Galen to him for an assessment. The chiropractor, using me as a surrogate, found Galen suffered from several allergies, a virus and a cranial lesion. Galen has had several unpleasant episodes with doctors but responded well to chiropractor adjusting him which brought about another significant change; the whining stopped. Perhaps it had been pain causing him to whine, whatever it was, it stopped. Since those early days chiropractor has dealt with all of Galen's allergies as well as bringing him up to optimum health.
Galen weaves his special magic on everyone who meets him, as I know is the case with many special children. I have a friend, who after having had a mastectomy said to me, the two best things that ever happened to her where having cancer and meeting Galen; one taught her how precious life was and the other taught her about unconditional love. This seems to be his effect on everyone who knows him, this tiny boy who has his tall big brothers eating out of his hand, his sisters in law working hard to bring him into our world and keep him here, his father and grandparents fighting for his right to belong, his friends simply loving him and his mother, well he has taught me so much about loving, learning and giving that I look at those bright eyes now and gone is the glazed stare and sacred self imposed isolation.. The sad thing, of course, is those who don’t bother or are too scared to look past the crazy stims and sometimes strange behaviour.
I had made friends with many people who, after his diagnosis, stopped bringing their children to play with Galen or inviting us to their homes. It was disheartening and even downright depressing at times. Perhaps they thought their children may catch this odious disease, who knows, but ignorance and fear cause many of these fragile families to feel isolated.
One thing being the mother of an autistic child has taught me, is to never underestimate a child’s capacity to learn; believe me, he or she will leave you amazed. They do however need to be kept constantly engaged in our world and not left to their own self stimulatory behaviour, or they will never learn how to reach their full potential. Galen is a happy, active child, who, through our combined interventions and alternative therapies learns more everyday about how to live in our world. It is hard and you have to give up much of your time and energy, but when that small, shining face looks up at me and says “I love you mummy” I know that it’s all been worthwhile and will continue to be. “I love you too Galen.”
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