Fiona: Lara's journey

Fiona Slomovic and her daughter LaraLara is my second child. Today she is 14 years old. She was born in 1997, 15 months after my eldest. I knew that something was different about her from day one.

As a newborn baby, she was incredibly calm, watched the leaves and the sunlight and only cried when hungry. From her very first days, she seemed in a world of her own, one we could not enter. But there was nothing at that time that suggested she had autism. The word never crossed my mind.

The early years

We moved to Italy when Lara was five months old. My husband was a British journalist posted there. I had a feeling that something was not right with Lara. She talked, but not much. She smiled and laughed but only to herself. She played with the same toys my son played with, but she would take them into a corner and line them up. I had started to read about autism but could not see how my daughter fitted the diagnosis. Lara was affectionate but something was not right.

We left Italy and returned to the UK a few months prior to Lara’s fifth birthday. It was at this point that Lara received a diagnosis of autism from Great Ormond Street Hospital. I didn’t want to believe it. For some parents it is a relief to finally get a diagnosis as it gives them an explanation for their child’s behaviour. I didn’t feel that way. I could not come to terms with it.

The first three years back in Britain were really difficult. Lara was five and began to attend a string of specialist schools. They were all good schools but none of them could cope with her. She would attack staff, bite other children, bang her head. Regularly, the schools would call my husband and me in the middle of the day to say they could not cope. I couldn’t work and I didn’t know how my husband managed to concentrate on his job. The problem reached a climax when I had a call from a school – Lara’s fourth in three years – and they said Lara had bitten two members of staff and that they had to be hospitalised. They could no longer offer Lara the support she needed and would have to leave. People around us, both family and professionals, were asking us to look at residential schools. Yet neither my husband nor I could bear the thought of sending our eight year old daughter away to live apart from us.

Getting Lara into TreeHouse School

I then visited TreeHouse School. I was with around 50 other parents at an open day. We were all crammed into one of the portacabins on the old site when the Headteacher spoke to us; she showed us around the school but warned that no spaces would be available for at least a year. The sense of disappointment – no, desperation – was palpable. Parents were saying, “well what about my son, he’s only three – surely you have space for really young children.” We heard from parents whose children had been out of school for years and from parents like me – whose children were attending schools that openly stated they couldn’t meet the child’s needs. People were practically begging for places. I remember leaving thinking that TreeHouse School was an amazing place but that it would be impossible to get Lara in.

But we did. We were supported by all the professionals who had worked with Lara over the years, the local authority and TreeHouse School. I think that everyone recognised that TreeHouse School was the last chance before a residential placement.

In the years since then, TreeHouse School has been a godsend. When the school rings me, my first thought is no longer: what has happened to Lara or what has she done? I know they can manage and support her and I have every confidence that she is cared for and educated every day that she is there.

She is a completely different young person to the scared and confused child who started the school five years ago. She is still autistic; she still has severe learning difficulties and challenging behaviour. She can still hardly converse. She will never lead an independent life. But TreeHouse School has taught her to make some sense of the world and given her the tools to live comfortably within it.

Battles with the local authority

Getting her into TreeHouse School five years ago – persuading our local authority to fund her – was tough beyond words. I am an optimistic person but the battle with the authority over her placement – one whose huge cost I fully recognise - sent me into complete despair. There was one particularly bad moment in the application process. One afternoon, as it was getting dark, the local authority phoned me. They agreed that TreeHouse School was the best place to send Lara. But they said that it was too far from our home and breached their rule that all placements must be under one hour’s drive away from the home.

At which point, I lost it. I took Lara out of the house and put her straight into our car. We drove from my home to the school just to prove how long it would take. We arrived at the school in 55 minutes. On arrival at the school gate, I called the local authority to tell them I had just completed the journey in that time. They immediately agreed to fund the place. I think they realised I was at breaking point.

The everyday challenges of autism

Even with Lara’s school life sorted, family life today is still a challenge. Lara’s behaviour is unpredictable. She might start stripping off her clothes in the street or screaming for no reason. She soils her bed and her clothes pretty much every day.   She eats uncontrollably. She hardly sleeps at night – she can go for months and months with only four hours sleep a night. And when she is angry, you can feel her strength. We have suffered more than our fair share of bite wounds and bruises, even a broken nose. She cannot be left alone with grandparents or other children. There are always two carers present to support Lara at school and at home; that’s how challenging she can be.

The media has talked lot about autism. We all want to celebrate the achievements of people with autism and show our love and respect for them. But the media says too little about how hard life is for many people with autism and their carers, especially those at the severe end of the spectrum as is the case with our daughter. It’s an exhausting life; it is not glamorous and, a strain on any marriage. And it sends some mothers to the very edge and beyond.

A close friend once asked me if I sometimes wished that Lara didn’t have autism and the answer is yes, sometimes I do. I’ve heard parents of children with autism say that they wouldn’t change them for the world and that’s fine. I say yes because it would make Lara happier. I say yes when she goes ‘into the red’ and she can’t come down; when she repeatedly bangs her head or bites her hands because she is so distressed; when she is desperate to communicate something but no one around her can understand or when she wants something that we just cannot give her. It’s not about making my life easier; it’s all about Lara and how to make her life happier. What mother wouldn’t want that for her child?

Thinking about Lara's future

There isn’t a day when I don’t think about Lara’s future. I know that Lara can’t live with us forever. One day she will need residential care. And it’s my job as a mother to make sure that this happens and that it is the right sort of care for her; but it scares me. Lara wants and deserves to be involved in the society around her; however she doesn’t know how to cope because of her autism and society doesn’t always know how to deal with her. I’m not even sure what a ‘meaningful life’ for Lara looks like. How will she fill her day when there is no longer school five days a week? What will she be like at the age of 40, 50 and beyond? Will she still be listening to the Tweenies when she is 50? What happens when my husband and I are no longer here?

Those are questions for another day. For now, TreeHouse School gives her the structure and intensive support she needs; they’ve also pushed us as parents to try things we never thought possible and helped us through many, many bad patches. If only there could be a TreeHouse for life. That would make Lara and me very happy.

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