a detrimental effect on us and the resultant levels of stress often made us irritable with each other – even to the point that I wondered whether our relationship could survive.
Jocelyn Phillips worked for Portage – a service that supports parents with strategies in the home – and she turned out to be a great support to our family in the months to come. However, she disagreed with my views on not having Angelo attend Grangewood School and considered that his going to a mainstream school would not do him justice. Jocelyn felt that Angelo needed a specialised way of teaching and that Grangewood School was particularly appropriate to his needs.What a dilemma!
When Angelo’s diagnosis was confirmed, an appointment was made at the Central Middlesex Hospital for a brain scan and, it goes without saying, there was little chance Angelo would be too happy about it. When a nurse attempted to put glue on the side of his temples in order to attach at least 20 wires, Angelo became very distressed and refused to co-operate – even when I held down his hands and someone else held down his legs he was too strong. It broke my heart to see him so distressed.
In the end it was decided to return to the hospital another time and to complete the scan under sedation in the children’s ward. I was asked if Angelo had been tested for epilepsy, since it was believed up to 50 per cent of autistic children either have or can develop it.
All this uncertainty, the lack of sleep, the worry and strain that we found ourselves subjected to meant that every day resulted in a roller coaster of emotions for Sean and me. It all boiled over a few weeks after Angelo’s diagnosis and resulted in a major argument between us during which I even threatened to leave home.
Don’t let anyone tell you that living with autism is easy. It is testament to our relationship that it has survived so strongly over the past few years in spite of all the heartache and challenges we’ve had to face along the way.
Chapter Two
What is Autism?
I t had been a real kick in the guts to learn of Angelo’s autism diagnosis and I remember crying for six weeks afterwards. Sean and I knew nothing of the condition – in fact, my first instinct had been to wonder how long Angelo would live. I didn’t know anyone else who had an autistic child.
So, what is autism? I didn’t like the sound of it. It’s such an ugly, harsh word. Basically, we felt that, after Angelo’s diagnosis, we had just been left to get on with it, since there was very little offered to us in the form of advice or support. Some doctors assumed Angelo’s condition was genetic, though, so far as we were aware, neither Sean nor I had autism in the family.
I realised I had to pull myself together and that feeling sorry for myself was of little use to Angelo, Patrick or Sean. I had a thirst for knowledge and I embarked on a voyage of discovery. The trouble was, the more I found out about autism, the worse the prospects seemed to be. The outlook, in my eyes, was so bleak and confusing. Nevertheless, I remained determined to find out all I could about the subject.
That, however, was not as easy as I might have initially hoped. First of all, I contacted the National Autistic Society, or should I say I tried several times without success. I should point out, however, that nowadays these problems have been overcome. Nevertheless, it was so frustrating trying to obtain knowledge at that time from an organisation that I just couldn’t get through to.
At last I managed to speak to someone who told me she would forward some information to me and she recommended a useful VHS video that would be enlightening, which I paid for over the telephone.
Six weeks later, I had heard nothing from them. No video, no information. Coral rang the society a couple of times to hurry them along on my behalf. They apologised and, eventually, the leaflets and video arrived through our letterbox. Watching the video for the first
Jocelyn Phillips worked for Portage – a service that supports parents with strategies in the home – and she turned out to be a great support to our family in the months to come. However, she disagreed with my views on not having Angelo attend Grangewood School and considered that his going to a mainstream school would not do him justice. Jocelyn felt that Angelo needed a specialised way of teaching and that Grangewood School was particularly appropriate to his needs.What a dilemma!
When Angelo’s diagnosis was confirmed, an appointment was made at the Central Middlesex Hospital for a brain scan and, it goes without saying, there was little chance Angelo would be too happy about it. When a nurse attempted to put glue on the side of his temples in order to attach at least 20 wires, Angelo became very distressed and refused to co-operate – even when I held down his hands and someone else held down his legs he was too strong. It broke my heart to see him so distressed.
In the end it was decided to return to the hospital another time and to complete the scan under sedation in the children’s ward. I was asked if Angelo had been tested for epilepsy, since it was believed up to 50 per cent of autistic children either have or can develop it.
All this uncertainty, the lack of sleep, the worry and strain that we found ourselves subjected to meant that every day resulted in a roller coaster of emotions for Sean and me. It all boiled over a few weeks after Angelo’s diagnosis and resulted in a major argument between us during which I even threatened to leave home.
Don’t let anyone tell you that living with autism is easy. It is testament to our relationship that it has survived so strongly over the past few years in spite of all the heartache and challenges we’ve had to face along the way.
Chapter Two
What is Autism?
I t had been a real kick in the guts to learn of Angelo’s autism diagnosis and I remember crying for six weeks afterwards. Sean and I knew nothing of the condition – in fact, my first instinct had been to wonder how long Angelo would live. I didn’t know anyone else who had an autistic child.
So, what is autism? I didn’t like the sound of it. It’s such an ugly, harsh word. Basically, we felt that, after Angelo’s diagnosis, we had just been left to get on with it, since there was very little offered to us in the form of advice or support. Some doctors assumed Angelo’s condition was genetic, though, so far as we were aware, neither Sean nor I had autism in the family.
I realised I had to pull myself together and that feeling sorry for myself was of little use to Angelo, Patrick or Sean. I had a thirst for knowledge and I embarked on a voyage of discovery. The trouble was, the more I found out about autism, the worse the prospects seemed to be. The outlook, in my eyes, was so bleak and confusing. Nevertheless, I remained determined to find out all I could about the subject.
That, however, was not as easy as I might have initially hoped. First of all, I contacted the National Autistic Society, or should I say I tried several times without success. I should point out, however, that nowadays these problems have been overcome. Nevertheless, it was so frustrating trying to obtain knowledge at that time from an organisation that I just couldn’t get through to.
At last I managed to speak to someone who told me she would forward some information to me and she recommended a useful VHS video that would be enlightening, which I paid for over the telephone.
Six weeks later, I had heard nothing from them. No video, no information. Coral rang the society a couple of times to hurry them along on my behalf. They apologised and, eventually, the leaflets and video arrived through our letterbox. Watching the video for the first
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