Conor Deeney

icare-004My 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.