25th February 2020 • My Family Our Needs
So, have we all survived what felt like the longest January ever? I wasn’t sure it would ever end. But February is here at last. And it feels that perhaps now would be a good time to make a start on the resolutions I committed to back on New Year’s Eve!
Knowing when to ask for help
I am pleased to say that not all of my resolutions have taken me so long to get round to. One has already been acted upon; to find the much-needed support to help my youngest daughter gain confidence, safety and independence in the wider world.
My daughter, who will be twelve in March, is clever, talented and has huge potential. However, despite this, she struggles to share the freedoms and growing independence of her non-autistic peers. I don’t want to list all the issues she has, as I am a firm believer in respecting her privacy. But let’s just say I knew I had to reach out and find support for her and for us as a family.
As an autism advocate, you might imagine that it’s easier for me to get support. In a way it is; I know who to approach as my research in this area is decades long. However the waiting times for referrals and assessments are exactly the same. There is, quite rightly, no queue jumping for autistic professionals and advocates who are also carers and who need support for their own family. For me though, perhaps the greatest hurdle was taking the risk of asking for help. Trusting those you ask for help to consider your request, without concern for your status, education, or ability to contribute financially, is not easy. Nor is removing the professional advocate hat, when the majority of your livelihood depends on YOU being or knowing the answer. Who do you trust to hear, ‘I don’t know what to do now,’ without making a judgement?
I decided to reach out to Dr Julia Leatherland and Hilary Armour (CEO) from the charity Dogs for Autism. I knew that Dr Lorna Wing had worked on a research paper about, and subsequently advocated for, the benefits of ‘The dog and autistic human relationship’.
Therefore I felt that such a relationship might benefit my daughter. As a child with an intense passion for animals, an assistance dog could potentially become a great educational motivator on a Home Ed day when she needs some oomph; a reason to leave the house when that seems impossible for her; and, when outside, an aid to navigating the world around her safely. We are fortunate to live near lovely woods, fields, duck ponds and lakes, and we have a wealth of red kites over the house. Each of whom is named and cared about by my daughter. I know that animals bring something to her life that humans can’t. They also benefit her wider family members, autistic or not.
On making contact with Dr Julia (autistic autism parent) and Hilary (autism parent), I was immediately greeted with warmth and understanding. They asked appropriate and relevant questions. Plus their understanding of autism, and how it can impact both positively and negatively on individuals and families, was clear. It felt safe to tell my story and I did so without fear of judgement. As fate would have it, the Dogs for Autism information day for prospective applicants was to be held the following week and they invited me to attend.
However, the information day was in Wetherby, Yorkshire, far from my home in Reading, and I am unable to drive such a distance, especially on motorways. Determined to find a way to get there, I started to research my train travel options. Little did I know that Hilary actually lives quite close by and, on hearing of my difficulties and travel plans, she offered me a lift. An incredible gesture of kindness, considering it was an eight-hour round trip! We had plenty of time to talk dogs and autism, charity and fundraising and, even better, my fellow passengers were Reggie the Pug and Poppy the black Labrador! I was amazed by the brilliant behaviour of both dogs and am in awe of the expertise and kindness of the charity team who attended on the day.
The benefits of an assistance dog
The extra mile Dogs for Autism go, to enrich lives and support the independence, confidence and safety of autistic children and adults throughout the U.K., all on limited funds, is remarkable. I left the day in no doubt that a professionally trained autism assistance dog is just as valuable, and should be as respected and recognised, as any other service dog.
After speaking with an adult disability advocate who is an amputee, I admired their service dog and asked what special things the dogs did to help. Their reply was so refreshingly candid. They said the way their dog helps most is that, instead of the first thing strangers ask being, ‘What happened to you?’, they now ask, ‘What’s his name?’
The struggle to initiate an appropriate conversation can feel like an enormous hurdle for many autistic children and adults. It causes such anxiety for some of us that it can feel easier not to interact at all. In this sense, an assistance dog can become a facilitator. Breaking down the awkward barriers that can exist at first meetings.
I make a point of keeping extremely busy with work and volunteering. As I know that, even after just two consecutive days at home, I will slip into living in two worlds – the outside world, which suddenly feels terrifying when I dip out of it, and the comfortable addictive world of isolation. I have to keep busy outside of the house, as well as in it. To stay strong for myself and my family, but this way of living causes burnout and leaves me exhausted. After speaking to Dogs for Autism, it became obvious that a specially trained autism assistance dog would not only be life-changing for my daughter, who is the applicant. It would also have great benefits for me and my wider family, as we recover from the world at home.
I am delighted to say that following my attendance at the information day, and the successful assessment of my application form, my daughter is now on the Dogs for Autism waiting list. I am hoping to help raise awareness and funds for the charity while we wait, and into the future. And of course will keep you all updated about our progress. We are so excited to know that one day we will be welcoming a puppy and a Dogs for Autism trainer into our lives. We will work in partnership with them both. From the beginning of training, until our dog meets the required standard and can move into our home full-time. We will be supported throughout the whole process by Dr Julia. She remains on hand as the Family Support and Autism Training Lead.
My dream of seeing my youngest daughter back in education, and reaching her goal of attending Art college, now feels somewhat closer. With the support of her own assistance dog, I believe the barriers which currently prevent her from living her life to the full will be broken down. I am excited to witness the transformation.