About Us Our Impact How we make a difference “Wanted – someone to stay and help me” “Wanted – someone to stay and help me”. This was the desperate plea, written in crayon, by County Durham youngster Ed Armstrong. Like so many children with autism who are aware that they’re just not ‘fitting in’ the way others do around them, this was the heartbreaking reality for Ed, now 10. “He’s so aware that he needs help,” says full-time mum, Emma Thomas “he’s even developed his own way of describing it, by calling it allergies. I’ve known him to walk into a room with other children and say, ‘Is anyone like me? With allergies that make you different?’ Perhaps if he wasn’t so aware it would be easier to manage.” Emma, 34, and house renovator partner, Alan Armstrong, 50, are no strangers to the Autism Spectrum. Emma explains: “When I met Alan, he was a single dad and his little boy, John, was just a toddler then. Even at that point he was starting to display characteristics of being on the autistic spectrum. He’s diagnosed with dyspraxia and dyslexia and we are still watching and observing regarding autism now. I knew a little bit about it because my degree was in education. Cheryl, now 23, Alan’s oldest daughter, has always been anxious and she’s in the process of being diagnosed as an adult.” The couple, who live in Stanley, also have four children together. Ed, now 10, who has a ‘high functioning’ autism diagnosis, Will, six, Amy age seven, and youngest brother Alan, who is three, and also being monitored as potentially on the spectrum because he’s displaying similar traits to Ed. “Whether that’s learned behaviour or something we need to be concerned about, we don’t know at this stage,” Emma added, “but like his brother his development has come on in leaps and bounds since being part of the North East Autism Society toddler group.” Run but the society’s family development worker, Kerrie Highcock, the toddler group began following a parents’ training course, also organized by NEAS, that Emma attended. She said: “I went to a course to help parents understand Autism and Kerrie was speaking. Unlike everyone else Kerrie helped us understand what it felt like to be autistic. All of us there wanted to know more and so we got a group together, and Kerrie put on more specialised training for us. I always remember this one session when we learned about sensory overload. I knew Ed had issues with this as noise can bother him. So when Kerrie blasted some music, and sprayed perfume, and made us taste something all at the same time, it really helped us understand what it must be like to feel overwhelmed like our children do, most of the time. We got so much from the course that we asked if we could keep meeting, and so the toddler group began. And the small, weekly group has become a life line for Emma. “Not only did we start going because of Ed, the group is now the thing Alan looks forward to most.” Unlike other groups Emma had tried, when the holidays came round, which can be a particularly challenging time for any mum with young children, and groups would stop, the NEAS toddler group continued and also allowed siblings to attend. “For Ed the toddler group was the only place where he could truly be himself. He is plagued with anxiety and never really relaxes, ever. He doesn’t even relax when he sleeps, he is just on ‘constant’ all the time. But in the toddler group Kerrie, in particular, just understood him. She allowed him the chance to be himself and there was nothing wrong with that. Now, it’s Alan’s turn to have a ‘Kerrie day’ as he calls it, and the change in him has been miraculous. From a little boy who wouldn’t even go near paint to being the one with his hands and feet in it, and the little boy who eats the home made pizza he created instead of the one who couldn’t possibly eat anything with that texture. “But the best thing about toddlers, for me and our family, has just been the consistency of it.” Not restricted to term times, the toddler group where Emma and her family attend, is run from a Sure-Start family centre every week. “Help for children who are potentially on the spectrum or who could have learning disabilities often comes and goes. You can see one occupational therapist for a few weeks and then a new one comes. You can see one expert in one setting and be told you will get regular support and some cut or other happens, or their shift pattern changes, or county boundaries change and so does your help. For a child with autism that’s the worst possible thing to happen. They value routine and familiarity and consistency. The toddlers has given us that.” For Ed in particular, familiar support was all he wanted. Emma added: “I said it before but Ed is very aware. He would probably be called high functioning in terms of his autism because he does okay at school academically but how he sees and understands the world is very different. He knows he is different to the other children and if you could see him with his little serious face you would understand that his young life is full of worry and anxiety about everything. Right now it’s about his future and what secondary school will be like. At one time though he was so desperate for someone to not just help, but to want to stay the course and keep being the one to help him that he drew me a poster, like the kind you see in cowboy films. It simply said, ‘wanted – someone to stay and help me.’ It broke my heart but through the family development work we have had help accessing support, getting a diagnosis, working with our school, accessing information and best of all Ed, and Alan, have their person who has stayed the course and believed the best about them. “Would I recommend NEAS? I already do. All the time.” NEAS have a range of family services for parents and carers to access. We support families both pre, during and post diagnosis. Click on the link below for more information about our toddler groups, family workshop and family networking services. Find out more about our family services.