TOM CLONAN'S son Eoghan, who suffers from a rare neuromuscular disease, will soon have a new best friend to help him tackle daily life
EOGHAN’S BIRTH in February 2002 was normal. He was a healthy baby boy and, like his three siblings, Eoghan met all of his developmental milestones in the first year. At around 12 months, however, we began to notice subtle changes. A slight tremor in his little hands. A slight flickering movement in his beautiful blue eyes.
We mentioned these signs to our GP. What followed was a blur of consultations with all kinds of specialists and a series of heart-stopping Cat scans, investigations and tests. This was our introduction to the incredible community of medics, health professionals and carers, from Temple Street Hospital in Dublin and the Central Remedial Clinic (CRC) in Clontarf. It was also our introduction to three new words – Pelizaeus-Merzbacher Disease (PMD).
Eoghan is one of a very small number of children worldwide who suffer from this rare neuromuscular disease. As a consequence, Eoghan is a wheelchair user and faces a constellation of challenges requiring constant physiotherapy, occupational therapy and speech therapy. Aged nine, Eoghan is intellectually normal and attends St Mary’s Boys National School in Booterstown. He is fully knitted into a very warm community and enjoys the support of his teacher, special-needs assistant, support teachers and the visiting teacher for the blind.
With two active brothers and a sister to contend with, Eoghan’s personality is robust. His sense of humour is highly developed and he has evolved an uncanny judge of character. He frequently makes pithy judgment calls. Recently, while peering at an image of Syrian President Bashar al-Assad on the news, he remarked: “He’s not able to do his job. And being bold isn’t going to help.” Hillary Clinton – take note.
Eoghan has always had a special affinity with animals. It was through this love of animals – and Eoghan’s constant requests for a dog or “a lion” – that we first became aware of Irish Dogs for the Disabled. Unlike Irish Guide Dogs for the Blind, which provides dogs for the visually impaired and families of children with autism, Irish Dogs for the Disabled specialises in providing assistance dogs for children and adults with physical disabilities. Established in 2007, Irish Dogs for the Disabled receives no State funding for its activities.
According to Jennifer Dowler, co-founder of Irish Dogs for the Disabled and its chief dog trainer, it costs approximately €15,000 to train each assistance dog. With six dogs currently in training, the overall cost of €90,000 is daunting. The current climate of austerity is challenging but, according to Dowler, Irish people have been very generous.
The dogs are bred from Labradors and Golden Retrievers. Dowler has carefully sourced two male stud dogs and four breeding females. Each litter produces a range of dogs with in-built traits such as intelligence, tolerance and loyalty. Dowler describes them as “bullet proof”. The pups remain with their mothers and foster families for at least 18 months before formal training begins. There are approximately 50 families or “puppy socialisers” who care for the pups. Their work is entirely voluntary. Throughout the process, from a prolonged period as playful pups to formal training, Dowler analyses each dog’s personality with a view to matching him or her to a potential client.
Just before Christmas, Dowler invited Eoghan to attend an initial assessment for compatibility at the Irish Dogs for the Disabled centre in Blarney, Co Cork. Eoghan’s excitement is hard to describe here. On the journey to Blarney Eoghan sang from the M50 all the way down the M7 to Cork. Dowler, who is a mother of two, carried out an in-depth assessment of Eoghan’s needs and family dynamic in order to make a potential match to one of the dogs in training. Luckily for us, she identified a possible match in a large, “placid” male retriever.
At the end of the session, Eoghan got to meet one of the dogs in training – a chocolate Labrador, and was thoroughly licked and sniffed. Eoghan will attend the Irish Dogs for the Disabled centre in Blarney this summer for an intensive training period with his dog. He will learn to take responsibility for the dog and to instruct and command the dog.
The range of tasks carried out by the dogs includes opening and closing doors, retrieving objects, emptying and filling washing machines, turning on and off lights and other appliances and activating alarms. Often, the dog’s presence allows for independent living. There have been many cases of life-saving interventions on the part of assistance dogs – especially after falls, heart attacks or other medical events. In Eoghan’s case, the dog will accompany him on trips to the shop and other journeys in our neighbourhood.
In Maynooth, Alan Carrigan (11) has had his assistance dog, Brandy – a golden retriever – for just over a year. His mother Frances has found the experience to be an overwhelmingly positive one. Alan, who has Cerebral Palsy, works well with Brandy, and the duo are regularly seen socialising with his friends and neighbours in the Parklands Estate. As I talk to Alan about Brandy, his hands – which can be tightly clenched – are open and relaxed as he strokes the dog’s head. Alan tells me, “I really, really, really like Brandy. He’s my friend.” Frances tells me that Brandy has been a great addition to the family and observes that the dog’s presence in their lives has “boosted Alan’s confidence, lifted everyone’s mood and, most of all, has us out walking twice a day”.
Apart from the invaluable contribution these dogs make towards independent living, they also remove the social isolation that can afflict wheelchair users and children with disabilities. People can be shy about approaching or talking to a wheelchair user. When accompanied by an assistance dog, however, people are drawn into conversation. This dynamic – the magical and magnetic effect of assistance dogs – opens up whole worlds of possibility.
Dr Tom Clonan is
The Irish Times
Security Analyst
Enter Cosmo The dog that saved our family
MOST DOG OWNERS think they have the best dog in the world, but we know we have. Cosmo is an exceptionally large, gorgeous bear of a dog. He has his mother's long, graceful, German Shepherd body in beautiful shades of tan, cream and black. He has the sweet head and soft ears of his Golden Retriever father.
Bred and trained by the Irish Guide Dogs Association, Cosmo's official title is "Assistance Dog to Families of Children with Autism". His name means "order, beauty, harmony" – the very gifts that he brought to my family's life when his arrival saved us two and a half years ago.
By the time my now eight-year-old autistic son Caoimh was aged five, his behaviour, when we went out, was so dangerous that he was confined to one of four places: my house, his father's house, my parents' house, or Saplings Autism School in Rathfarnham, Dublin.
Life for people such as Caoimh – especially when they're taken beyond their safety zones – is a horrifying, unpredictable, unstable bombardment of aural and visual white noise and distortion. All of Caoimh's senses are scrambled by his disorder.
Because of Caoimh's faulty sensory processing, and despite the fact that he is very clever, it has taken years of one-to-one Applied Behaviour Analysis (ABA) education, therapy and healing for Caoimh to even begin to understand what is happening in his environment, or to learn to communicate and interact socially.
When Caoimh grew beyond toddler-size, I could no longer cope with him bolting, screaming, and physically assaulting me and others when we were out, particularly as a single mother. My adorable ultra-sensitive boy became a ball of adrenalin-fuelled fight-or-flight response when we went beyond four known walls.
Eventually, I couldn't manage Caoimh in a shop for two minutes. I was at high risk of a breakdown, and Caoimh was at high risk of early institutional care.
It was at this nadir, after nearly three years on the waiting list, that Caoimh's name came up for an assistance dog. He was carefully matched to Cosmo, whose exceptionally placid and accepting nature make him suited to move between two homes, and take orders from me, Caoimh's father and his step-mother.
"What would have become of us if we didn't get Cosmo?" said Fiach, Caoimh's nine-year-old brother, one year after Cosmo began to work his magic (Fiach, like other siblings of children with special needs, is too mature for his years).
Gradually, with the help of in-depth knowledge and support from the Irish Guide Dogs Association, and through intense effort over a period of months, Caoimh was taught how liberating it would be for him to go out and experience people and the world, while physically attached to and overseen by his canine guardian.
Cosmo obeys us with diligence and devotion, working way beyond the call of duty. It is very clear to him which child is independent, and which child needs his close attention, protection and help.
Within months of Cosmo's arrival, Caoimh's tantrums dramatically decreased. He began to develop some spoken language. His confidence and happiness grew. He was able to cope with critical situations such as visits to the doctor, dentist and hospital. A psychological wheelchair, Cosmo keeps pushing Caoimh beyond the constrictions of his neurological "disability", into ever more new, colourful territory beyond four walls. The effect is cumulative. Their relationship deepens and grows.
Caoimh holds Cosmo's big heavy head in his small hands. He gazes into his eyes and coos, smothering him with hugs and kisses. After ABA, Cosmo has been Caoimh's most important therapeutic intervention.
Cosmo has transformed and revolutionised our lives. He is our saviour, healer, comforter, hero. Our love and gratitude for him have no end.
Adrienne Murphy
