An autism assistance dog for Joel

Now it's like this. I'm begging. I no longer care what others think. I'm just happy when I get help. For Joel. He is now seven years old. When he was diagnosed with Asperger's autism a year and a half ago, I knew what I was in for.

Joel's 14-year-old brother is also autistic. I went through everything that parents of autistic children can go through with him: the initial helplessness, the investigations and, above all, the desperate search for support. It led us through a jungle of inpatient psychiatry, foster families, psychiatric respite care, outreach psychiatrists and special schools. Autism became my main subject in this school of life: I looked for help in a number of training courses and books. But I also wanted to be a good mum to my daughter. She is twelve today.

Cancer is curable, autism is not

So I was in the middle of this process when Joel started to show similar signs to his brother at the age of two. He became increasingly overactive and wilful and could no longer be controlled. Too many stimuli led to outbursts. Then he would scream, cover his ears, throw things around, crawl desperately under his duvet in his room and wouldn't let anyone get close to him.

I put off a check-up. Five years ago, I was diagnosed with cancer. My husband and I were also separated. That exhausted me. I wouldn't have been able to cope with another autism diagnosis at that time.

In the meantime, some things have levelled out: The cancer treatment has been completed. I have found a great foster family in the neighbourhood for my older son. He spends three days a week there. He is now also going back to public school. My ex-husband supports me with childcare one evening during the week and at weekends. So do my parents. They live in the same house. We usually eat together at lunchtime.

I'm glad about that, because there are always incidents. It only takes a little - for example, a lettuce leaf touching the rice. The plate goes flying. I do everything I can to minimise Joel's suffering: always the same daily routines, clear structures, visual instructions, reducing stimuli wherever possible. And yet I can only protect him from seizures to a limited extent.

Autistic people are often unable to adapt to a changed situation.

Joel reaches his limits at school

Since Joel started school, things have been even more difficult. He currently attends a mainstream school with four hours of inclusive support. This is a huge challenge for him, often overwhelming. It seems to me that he has a certain amount of stimuli that he can process on a daily basis. He encounters many of them on his way to school. An aeroplane in the sky, a car he has never seen before, the noises of his classmates - it all stresses him out.

At school, he tries to make contact with his peers, but he keeps reaching his limits because he can't read emotions, understands statements literally and doesn't react appropriately. The special needs teacher educated the parents and therefore the class about autism. That was important to me: I want people to know: It's congenital. It cannot be cured. It is not a parenting mistake.

The facade collapses within your own four walls

Sometimes Joel manages to fit in well at school. He specialises in this - just like his brother. But it costs him an incredible amount of energy. At home, the façade collapses. He loses control and can no longer cope with anything. First there is tunnel vision, despair, and then he runs away. If I follow him, it only gets worse. There have been times when he has scratched cars and knocked over posts in such situations. That exhausts him. And me too.

Autism is a constant confrontation with yourself and others. Sometimes I don't want to hear any more about it. Leave me alone with it, I want to shout. Other days it's fine. But I hardly have any time for myself anymore. Joel often gets me out of bed at half past five in the morning. I'm constantly busy with the children until the evening. When all three are present, it's just chaos. Sometimes I would like to pursue my hobbies or my job as a carer again. At the moment, I work three hours a week in my father's office. Always on Tuesday evenings, when my ex-husband puts the children to bed.

Not enough for everyone

I first realised that a dog has a calming effect on Joel thanks to Sweetie - our little pug. Joel sleeps better when Sweetie is in the room with him. That's understandable: dogs are easier to understand. They don't expect anything.

But I only recently learnt that dogs are actually used therapeutically with autistic people on World Autism Day. Families with autism assistance dogs were there. I realised that this is exactly what would take the pressure off us. We see a child and adolescent psychiatrist every three weeks, receive two hours of help a week from a family counsellor and Joel has been attending puppet therapy for a year. The dog could complement the support services and offer Joel security in everyday life.

It takes two years to get a companion dog. I can't wait that long. We need the relief now.

So the horse game started all over again: searching, talking, clarifying. I actually tried to keep Joel out of the dog issue for the time being so as not to raise any hopes. But autistic people are like that: They notice everything. We first considered a provider in Allschwil near Basel. The Swiss School for Guide Dogs for the Blind Foundation. It has been training autism assistance dogs since 2012. I liked her straight away. Joel was allowed to go for a walk with a dog and was very enthusiastic.

The problem is that the foundation is overwhelmed by enquiries, but can only offer around eight dogs per year. Children are allowed to take part in a draw once every six months. Four to five children up to a maximum age of ten are chosen and put on the waiting list. From then on, it takes about two years to get the dog. I can't wait that long. We need the relief now.

I extended my search beyond the national border and came across a German organisation for assistance dogs. It does not keep waiting lists, but selects its clients after a careful examination of the application and a personal meeting. It also has no age limit.

One thing led to another. In spring, I met Thomas Gross at a trade fair in Karlsruhe. He is the chairman of the Association for Assistance Dogs. In the summer, he invited us to Rostock for three days so that he could get to know Joel and get an idea of his seizures. Mr Gross decided to work with us. Joel could get his dog at the end of the year - if I can secure the funding by then.