The following articles were written by disabled parents wishing to share their experiences with us in their own words.
A unique partnership: Support dogs
Enter Tony Brown-Griffin’s house near Tunbridge Wells and you soon realise this is not your average household. First to greet guests are the three assistance dogs, who share the house with two cats, at least one rescue ferret and four chickens. Then there are the two children – 12 year old Grace, who has autism, and five year old Mimi, who was born with a near fatal heart condition. In charge of all this are Dan (who his wife describes as “very laid back” – which could be a blessing!) and his wife Tony, who is both blind and has epilepsy. Never far from Tony’s side is her unique dog Hetty; the first assistance dog to be trained as both a guide and seizure alert dog.
Tony had her first seizure in her late teens and was diagnosed with epilepsy in her early 20s. Seizures can be frightening, and dangerous too – Tony has broken ribs and other bones by collapsing without warning and striking furniture as she fell. She was experiencing 12 major and up to 40 minor seizures a week when she received her first seizure alert dog from the charity Support Dogs in 1995.
Tony explains: “The dog can warn me, usually about 40 minutes in advance, that a seizure is coming so if I’m out and about, I can jump in a taxi and get home or at least find a place of safety such as a police station & explain what is about to happen”.
It is not known exactly how the dogs detect the seizure but there are minute physiological changes in the person, invisible to the human eye. Katie Burns, Training Manager at Support Dogs, says that to make the training work “you have to make a seizure so exciting for the dog and give it its highest value reward at that point, that the dog will then look for hints and cues to spot the seizure earlier.”
When the Brown-Griffins were told that they were expecting a child with a potentially fatal heart condition who would need urgent reconstructive surgery, Tony’s seizure alert dog Ajay provided an immense amount of support. Tony says that without an alert dog she would never have had children as she would have been unable to look after them or herself. Ajay was present during Mimi’s birth and stayed in hospital with the family.
To add to what they were going through, it was at this point that Tony suffered catastrophic bleeds in her eyes and lost a significant amount of sight leading to further deterioration and becoming registered Blind. However, determined not to give up her independence, Tony contacted the local Guide Dogs team, who helped Ajay support Tony as an unofficial guide dog, as well as continuing with his seizure alert duties.
With Ajay approaching retirement, the search for a replacement began. It takes a very special dog to carry out two such intense roles and with Tony leading such a busy life, it was important that the dog could keep up. Support Dogs is based in Sheffield, so they worked in tandem with staff from the local Guide Dogs Mobility Team to identify suitable dogs. Their search took them right up to the Forfar Guide Dog Training School in Scotland, where they found two dogs with suitable characteristics. In the end, both were dual trained to ensure at least one dog would be available for Tony.
Tony met both dogs but she had an immediate rapport with Hetty, who Katie describes as: “Very loyal, in tune with individuals and good at problem solving, which you have to be as a seizure alert dog as you have to respond without human help.”
When Tony returned to Sheffield for her training, Support Dogs carried out a week of seizure alert training before Tony and Hetty started work with Guide Dog Mobility Instructor Ian Armstrong, who found the whole experience a real eye opener: “Tony had a lot of seizures but Hetty wasn’t distracted at all. It was fascinating working with both of them, one of the most interesting things I’ve done in nearly 30 years with Guide Dogs.”
Hetty has a one hundred per cent success rate in predicting Tony’s seizures (exactly 42 minutes beforehand), which can come day or night. “When I have a seizure, Hetty lies behind me until I recover. They usually last five to 10 minutes but, if you have a warning, the fear is taken away. With Hetty on duty 24 hours a day, I feel safe.”
Hetty’s guiding skills are equally important to Tony. As she says: “Life without a guide dog would be awful. All the things that I take for granted – spotting trip hazards, finding doors, post boxes – they’re all down to Hetty using her eyes for me.”
Despite having to cope with more than her fair share of adversity, Tony remains refreshingly positive. She admits to having “dark, frustrating days” but her view is that “if you’re negative, you just get dragged down. I’m definitely a glass half full person.” Certainly she never sits still for long. As a trustee for Support Dogs she travels up to Sheffield regularly. She also teaches Braille. “I had to learn it myself and couldn’t live without it,” she says. “It means I can read books with the kids, which I love.”
As well as having Ajay and Hetty, the Brown-Griffins have a third assistance dog of a different kind. Merlin is their daughter Grace’s autism assistance dog. His role has evolved as she gets older but he gives her confidence, helps her relax when she gets anxious and provides a degree of predictability for her family.
Tony has been taking Grace horse-riding for some time to help with her physical coordination problems. “It’s one of the things we can all do as a family,” explains Tony. “Both girls like to compete and for Grace it’s a level playing field.”
Tony used to ride and managed a yard before the epilepsy got too bad. She is now back in the saddle, with Hetty looking on. “It was very scary riding again but I’m jumping now, and doing dressage. I have to do a lot by feel but the horse seems to know there’s something different about me. It’s still scary but it makes me feel alive.”
Nothing much seems to stop Tony as she overcomes one apparent problem after another. Technology has made a big difference and you wouldn’t find Tony without her smartphone. She says: “One of the scary things about being blind and having epilepsy is that when you come round after a seizure, you have no idea where you are. I use a sat nav that I can program to tell me where I am, where I need to be and what time.
“The combination of guide dog, seizure alert dog and technology means that I can take on the world. My dogs are my strength.”
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