Conor Deeney

My name is Conor Deeney. I am 14 years old. I live in Clonmany. I go to school in Scoil Iosagain. My teacher is Miss Friel in my classroom. Assistant is Kay. I like Geography. At school I like looking at the atlas. My favourite subject at school is Geography. I don’t like when people are shouting in my class.

My favourite food is Paella Marinera. My favourite drink is water. I don’t like eating black toast. I don’t like drinking milk.

My favourite music is Riverdance. My favourite dance is Spanish. My favourite holiday place is Spain. I like Chelsea football club. I don’t like bad weather.

Going to see my cousins in Cavan makes me happy.

 

A Mothers Story

When we found out that Cian had Autism we swallowed hard and looked around for hope, help and answers to Cian’s difficulties. When we found out there was no help and no hope it was like being put into a pitch-black room searching for the door handle. Cian is nine years old now, yet every day still; we experience the anxiety and helplessness of being in that dark space. We experience it from friends, from family, from professionals, from Jo Public. Why? The short answer is because no one really understands Autism like the fathers, mothers and siblings that live with their precious child/ran day and daily.

 

No matter how much you read about Autism, no matter how much you study the condition it is not enough. Our children are all different and react to the world in different ways. For most of Cian’s young life we were very concerned about symptoms and behaviours that are not often listed as characteristics of Autism. Symptoms such as digestive discomfort, unregulated stools, bed wetting, screaming fits, holding abdomen and head while sobbing uncontrollably.

 

This is my memory of Cian’s early behaviour. He also had eczema that bled and blistered. He had constant ear and throat infections. He had been administered twelve antibiotics before the age of two and was hospitalised on two occasions. He screamed in pain for up to two hours at a time. He rarely slept and when he did he would waken sobbing uncontrollable with his hair and body soaking particularly round the neck area. He always lay in the foetal position and pulled his legs up as though he were in pain. We were so convinced he was in pain that we returned to the doctor’s office on a number of occasions. However his symptoms were put down to Autism. My concerns never left however. We noticed that certain foods affected Cian’s behaviour.

 

We removed Wheat and milk. Cian became more aware. Hand flapping stopped and he went from playing with the dust on the carpet to building a twelve-piece puzzle with no adult guidance or encouragement. Cian continued to scream, sob and bang his head while he searched our faces to do something. We went to the dentist in case he had tooth ache. There was no decay. All his bottom teeth were removed. Just in case. Cian continued to scream. I took him to the hospital and refused to go home until his abdomen was examined. We were refused, as there was no formal notice from our doctor. We sat and sat and cried and sat. While I cried and Cian screamed a friendly doctor from the children’s ward told me he understood my concern. He was a father too and he would be concerned but it was just the Autism. I sat on and cried some more. Eventually three hours later Cian was granted an x-ray. The flat panel x-ray showed that Cian was fully constipated right up underneath his rib cage. His tummy was protruding like a child suffering from malnutrition.

 

Cian was prescribed Lactalose, which contains sugar. I had already removed sugar from Cian’s diet. When we removed sugar Cian stopped climbing into the windows and on top of furniture. He also stopped making loud noises and inappropriate giggling. His stool and sleep patterns improved immensely. Only when he had an infraction of sugar did the old behaviours return. I searched the Internet and made contact with a group of doctors (mostly American) professionals and parents who were following bio medical protocols. Cian is now on a full supplement programme and a healthy diet of fruit, veg, meat and fish, brown rice and gluten free pasta. The main improvements are:

 

- No more screaming fits and uncontrollable sobbing.

- No more head banging.

- Much calmer and aware.

- Improved concentration.

- Some speech and a full vocabulary when he uses it!

 

It is likely that we will need to follow this regime for a long time to heal the damage in the gut that has been found by substantial testing carried out by IDWL and over seen by a nutrition list and doctor that is advising and supporting me with this protocol. It is a joy to watch out little boy emerge from the screaming, spaced out, loud ‘jumping jack’ he once was. It is sad that Cian fails to get this kind of support and help within our health care system. It is also sad and deeply upsetting, that, when our children cry, become upset, frustrated or scream it is BECAUSE of the Autism.

 

We would get out of the dark room once in a while if professionals would look beyond the Autism and see a little human being who has basic needs like every other child their age and may be in pain or may be overwhelmed in an environment that in turn is affecting the behaviour.

Coming to terms with Autism

Coming to terms with a diagnosis of Autism If your child has not yet had a diagnosis, uncertainty about their situation may be very stressful for you. Sometimes the process of reaching a diagnosis seems to take a very long time, and for some parents this time is harder than the period after a problem has been identified. ‘The stress is not knowing. If you know a bit and you’re actually doing something, even though there are 100 things you could be doing, you feel better about it.’

 

If the process of diagnosis is taking a long time, it may be that the professionals suspect your child has autism or a related condition but want to be certain their diagnosis is correct. This is important, because it affects the type of help that will most effectively address your child’s needs. Unfortunately, there are delays sometimes simply because of the high demand on services for children with disabilities. ‘Some health specialists may be reluctant and say ‘We don’t like to label children’. Well, we don’t like to label them as parents either, but we have to. Getting that label is the first step to getting some help and you want to know what it is you are dealing with – you just want to know.’ There is general agreement that getting appropriate education and/or therapy at the earliest possible stage maximises the chance that a child with autism will develop their abilities. The sooner you get a diagnosis, the sooner you can begin to get the help your child needs. If you have received a diagnosis, even though you may have thought you wanted definite information, it can still be a big shock.

 

Many families experience diagnosis as a time of great emotional upheaval. Some families feel they need to grieve the loss of the child they thought they had. Feeling angry or feeling that you must be at fault are normal and common reactions. This process is an important part of accepting your child’s diagnosis, and it can take time. ‘It’s really hard, and often you deal with it on your own. It’s a sense of bereavement really – and very devastating.’ When some family members find it easier than others to adapt to the family’s new situation this can add to the strain. ‘There’s no way of knowing how to deal with each other, how to deal with members of your family who say the most stupid things, like, “Oh, he’ll grow out of it”.’ Some families go through a process that starts with shock and an inability to do anything, and then moves through anger to some sort of acceptance. Different family members are likely to take a different amount of time to go through this process. But parents of children with autism emphasise that it really helps when you reach a point at which you can begin to accept the situation. ‘I think the first most important thing is for someone to tell you that you need to accept he’s got this thing. Once you accept, you can help. I think what we tend to do is feel sorry for our children, and then you can’t do anything.’

 

Some parents say it’s helpful to think in terms of setting out on a journey. It won’t be the journey you expected or wanted to go on and it will have low points but it will also at times bring rewarding experiences. ‘I read something that I thought was very powerful. It starts off: “I thought I was going to Paris. All my friends were going to Paris and I thought that’s where I was going, too. But I suddenly found I wasn’t in Paris. I was in Amsterdam. I didn’t want to go to Amsterdam. That wasn’t where I’d set out to go. But now I’m in Amsterdam and I’m looking around, and Amsterdam is different to Paris. But actually it’s quite beautiful in its own right.” And why that was very powerful for me was because it was about stopping comparing. It was about, stopping wishing you were in Paris, and starting to look at Amsterdam and to think about what you can do there.’ ‘Someone who also had a child with a disability told me: “You’ll meet people in your life now that you would never ever had met if you weren’t setting out on this journey. You will meet the most genuine, the most kind, the most imaginative people, and if you weren’t entering into this world, you would never have had the opportunity to do that.” ’ However, it’s important not to deny how stressful it can be to have a child with an ASD. ‘Sometimes you have negative thoughts about your child, but when you talk to other parents you realise that it’s quite common, and that it doesn’t mean that you’re a dreadful person, or a bad parent.’ Some parents feel very alone, and unsure of how to cope with social situations. ‘You feel so isolated. I tried to take my little boy to the park but he would run off and hit other children. So sometimes you’re just stuck indoors with him, and you do start to get a bit depressed, really.’ It can also be particularly difficult to handle other people’s lack of understanding.

 

Over time, you will develop skill in handling other people’s reactions. ‘“Give him a slap”, growled the young workman sitting with his cup of tea reading his Inish Times . The unfamiliar surroundings were making Wee Jonny anxious and he was whining. This time I was ready. There was an awkward silence from the other people in the café. Into it, to no one in particular, I said, in as neutral a way as I could manage: “He has a disability” and left it at that. The workman retreated into his paper. The others relaxed and returned to what they were doing. We had created some space for ourselves. It had worked.’ All parents say that what really helps is talking to other parents of children with autism. ‘Unless you’re fortunate enough to speak to other parents who have been in the same position, you feel that you’re on your own.’ ‘It’s important to be able to share a problem with somebody who knows exactly what you’re going through. You haven’t got to go through the rigmarole of explaining it all – because that’s the depressing factor, I think. But when somebody else has got it as a normality in their life as well, you can laugh about some of the weird things that happen.’

 

This guide aims to help you to find the information and support you need so that you can move forward and feel more in control.