Autism is a very puzzling and painful disorder for parents to understand and deal with, you have a beautiful child who seems to live in a world of his own, you reach out with love in your heart and get no response. You feel bewildered, hurt and helpless and so isolated. You know in your heart there are things you can do to reach this child, things that will help him to make sense of a world that is so intolerant to him.
The Autism umbrella is vast; within its boundaries are a wide range of abilities and disabilities and a wide range of differences. Scientists are uncertain as to how it is caused; Educators debate how to manage it. Professionals are baffled about how to differentiate among its various labels and the individual with autism are all too often without any voice at all. Autism touches and reaches out to many.
The Beginning or the Dawning
On the 5th of October 1989, my son Andrew was born, he was our fifth child and like all mothers when they give birth, I was so relieved that he was ok, he had 10 fingers and 10 toes etc, little did we know what was in store for us as he grew and developed. The first two years seemed alright Andrew achieved all the usual milestones, like sitting up, crawling, walking etc., however he did cry more that his three sisters and one brother had done mainly because he was very colicky. However unlike them he was late to develop language, he had only got about 3 to 5 words by the age of 18 months. We were not too concerned at the time because he was the youngest of five, and the age gap between him and his older sister is 20 years, he had in fact got four mammies instead of one also he was a boy and boys can be lazy. However, when I took him for his developmental check at 20 months I was becoming concerned and requested that he be assessed to see if there was any underlining problems.
The speech & Language therapist recommended that Andrew receive therapy, but due to the lack of services it was quite sometime before he received this and when he did it was only once a week for 20 to 40 minutes depending on how he cooperated.
The Long Journey to Hell and Back the Early Years
The terrible two’s turned into the terrible three’s and four’s, Andrew became very hyperactive and could have up to 6 or more temper tantrums a day, he would scream, throw things he was always running around, opening and closing doors, turning on and off lights, climbing walls and trees, he had no fear of falling nor did he feel pain when he fell. However he was very frightened of loud noises, and would run and hide and cover his ears when he was exposed to noises, especially balloons, traffic or any high-pitched noise. Eye contact was not great with people outside of the family and none of my parenting skills worked with this child.
I began to observe other things that were happening to Andrew, he began to change physical, for instance his left eye became smaller, he began to drag his right foot, and would hold his right arm in a fixed position to his body and keep his hand in a closed fist. I also had noticed that the soft spot on the top of his head would swell from time to time. The climax came when he was nearly four I had been away at a conference and returned home to mayhem. He was out of control and ended the day by completely demolishing his bed room by throwing the entire contents except the bed, down the stairs into the hall, and then flaking out on the bed from exhaustion. We had, had enough; something had to be done to rescue this child.
Andrew had during this time been expelled from play school after two and half days, this child was out of control, yet controlling our whole lives, we were not coping, we had become prisoners in our own home and our family had become isolated and divided.
The Long Journey to Recovery
The journey to recovery was a journey, which was to change my life and that of my family’s way beyond anything we had ever known or were prepared for. Our struggle to find out what was happening to our son was a long and painful one, we went from service to service, from professional to professional and ended up owing the bank 10,000 pounds we had to remortgage our house to pay off our debts.
Eventually Andrew was sent from our local clinic, to a Language Unit in South Dublin. We in our innocence thought that we would now get the help we so badly sought for Andrew but after 8 months we were told that they could not meet his needs and would have to send him to another service which in our opinion was not suitable and so the battle began. It was also a very confusing time for us as a family as we were getting different opinions from professionals as to what Andrew’s difficulties were, we were being told that he was an unusual child or that he was a gifted child or that he was a child with emotional and behavioural problems and so on. . None of the professionals could agree on what course of action to take and only offered us a place for our child in a school for children with emotional and behavioural disturbance, an offer which we declined.
The day that always sticks in my mind is the day that one of the professionals told me that she thought that Andrew was Autistic, I still can see the smile she had on her face as she imparted this information to me and asked me how did I feel about it. I remember being panic-stricken, my knowledge of Autism was that of a person who lived in a world of his or her own and who was institutionalised. I remember the terrible urge to pick my son up and run and run, as far away from this person as possible, to this day I do not remember driving home from that clinic. There was no such thing as counselling or help for parents who receive such bad news.
When I did recover from the shock I remember the over whelming feeling of trying to protect the rest of the family from such news and this consumed me for quite a while. I tried to get information on Autism but at that time in Ireland there was very little access to information I eventually managed to obtain a book but the contents of this book really frightened me I put the book in the bin. I felt that we were never going to be a normal family again and worst of all I was never going to get my life back again, everyone we went to was so negative and depressing. My feelings were all over the place I kept asking myself what had I done to deserve this, I cried a lot, I did not want this child, this child was not the child I thought I was going to have i.e. the perfect child who would go to mainstream school, pass his exams go to college, get a job and maybe marry and have children. I could not understand why these people could not help us or my son, none of the services that we were referred too were capable of providing for Andrews needs – these services made us feel very isolated and excluded, we felt that decisions were being made about our sons future and we were not given any say in these decisions nor were we offered choices. We also got the impression that they really did not know or understand this child and would not admit it. All the reports and assessments that they done on our child did not present a profile of the Andrew that we, his parents, knew, we could not comprehend that the child we knew was nowhere in these reports.
It was at this time that we decided we would have to take control of the situation for Andrews’s sake because if he ended up in the wrong service he would never get the help he needed. I remember going into his bedroom one night to check on him, he was asleep, he looked so peaceful just like a little angel, I felt so sorry for him, it almost broke my heart, as I wondered just what was going to become of this child if we did not get the appropriate help for him soon.
We managed to get a private assessment by a professional who assessed Andrew using the correct assessment tools, the recommendations were that Andrew should be in a special class for children with language difficulties and that he should have a very intensive language programme as his receptive and expressive language was severely delayed, however he at this time could read without ever been taught to do so, he at 5 years old had a reading ability of a 14 year old but a comprehension level of a 2 year old. He would not engage in conversation with you and was very stereotyped in his play and was developing obsessions but he did have a sense of humour but it was a quirky sense of humour. We however were not successful in getting him in to a language unit so we had no option but to put him into mainstream school, unfortunately he only lasted 2 months and I was asked to remove him so I kept him at home and started working with him myself, I was actually doing a form of ABA with him until the next school year and after a lot of research about the type of school and programmes that he needed I went into battle with the Dept of Education and managed to get him a place in a Special School in Stillorgan which catered for children just like Andrew.
There, for the first time, we came in contact with people who knew and understood our son, he was assessed by a psychologist who had been TEACCH trained and for the first time we had a true picture of our child. An IEP (Individual Education Plan) was drawn up for Andrew this was in 1998. We thought that after two or three years that Andrew would be mainstreamed but as he progressed it became very clear that mainstreaming for Andrew was not an option nor was it in his best interests even though it was really what I wanted and we had to think long and hard about this and make our decision based on the best information available, this lead me to researching Autism and the outcomes for people with autism and the type of educational provision that would be best suited to his needs. I eventually did a thesis on Autism, which helped me to gain an insight into this syndrome that has been of value to Andrew and others.
Andrew was making excellent progress – his teacher was just wonderful – and we had the best multidisciplinary team in the county. Andrews diagnosis was PDD NOS which means that he is on the Autistic Spectrum but does not quite fit the criteria for Kanners Autism or Aspergers Syndrome, we at long last had a sign post and we now knew the route we needed to take. But getting access to that route and keeping on that route has been very difficult. Things do not always stay the same, you have no control of other things that can effect you child’s future, for example the principal of his school died and a new principal was appointed, this turned out to be a disaster and within a year life had become very difficult because this principal did not have a understanding of Autism and began to make changes that had a terrible effect on the children and the staff. So eventually we moved Andrew to another School the principal of this school was the most wonderful person I have ever had the pleasure to work with he as an extraordinary man and had a understanding and knowledge of Autism that would take your breath away. He however took early retirement last year due to his wife’s illness and he is very much missed by both staff and the children. So as you can see it has been a journey that has been fraught with highs and lows.
Where I am Now and the Future?
Being a parent of a child with a disability can be very hard to bear, but being a parent of a child with a hidden disability like Autism is very very hard indeed, I have often envied those parents who’s children had heart problems or who’s children had cancer because they had a chance of being cured. One of the hardest things to deal with in the early days was the fact that Andrew had no friends in our neighbourhood, no child ever called to our house to invite Andrew out to play, he was never invited to a birthday party, his brother was teased by the other children on the road – he too did not have any friends in our neighbourhood and there was no help or support for parents and siblings But the flip side of that is that this child with Autism has had such an effect of me as a mother and us as a family he has taken us on a journey that is much more valuable.
The more we learned about Autism and how it effects the person, we found the hidden person in our son, this boy has shown us what unconditional love really means, he gave us the opportunity to discover the depth of our characters, the depth of our love, our commitment and our patience’s and abilities, he gave us opportunities to explore our spirit more deeply than we ever imagined possible, he has driven us further that we would have ever gone on our own, working harder, seeking answers to as many questions with no answers. I have been to places that I would have never gone, met the most extraordinary people that I would never have met. Children like my Andrew give us more that we ever can give them in return.
As we continue on this journey attitudes are changing and my capacity to learn and help others increases all the time the thing that brought all of this together for me was when I got the opportunity to attend the course of Partners in Policymaking. For me it was the one course that gave the skills to ensure that Andrew would be able to have a say in the kind of life that he wants to live. It was the Person Centred Planning section that I was blown away with as I felt that I had found the missing piece of the jig saw, Person Centred Planning has given me and Andrew the tools to develop and influence his future in a way that I did not think was ever going to be possible. I now look forward to Andrew achieving his goals and reaching his potential what ever that may be – I will leave with these thoughts:
What is the price of a dream not dreamed?
What is the price of a word, not spoken?
What is the price of a voice, not heard?
What is the price of a vision, not imagined?
What is the price of a life, not lived?