hey say that having a child changes your life forever. When you have a child like Natan, it blows it away.”
For the first couple of years, Carine’s experiences of motherhood were just like anyone else’s. Her son, Natan, was long-awaited, much loved and she monitored his development eagerly. “I was so proud to be a mum. I compared Natan’s progress with that of his little ‘fiancée’ and exchanged tips with other mums on the local parks and playgrounds.”
But when he was around two years old, Carine became concerned about Natan. “He started to say a few words, like any kid his age, but then he went mute.” Carine is originally from France and was using a French paediatrician, who told her that the problem was likely to be caused by the fact that Natan was learning two languages, French and English, but Carine was not convinced. “I had a nephew in France with special needs, and, watching Natan’s development, I knew quite quickly that something wasn’t right.”
A neuro-paediatrician in Paris also told Carine that she had nothing to worry about but Carine was determined to get to the bottom of the issue. “I checked his hearing and his sight, but it wasn’t enough. Back in London, I looked for someone who would be able to give me a diagnosis. I chased, nagged, and finally found a child psychiatrist who said the word that would change our lives forever: autism.”
It was a watershed for Carine and her husband, who reacted in very different ways to the news. “My husband fell into depression and guilt. But for me it was a relief to be able, finally, to give a name to our anxiety. It was very difficult for our relationship for the first couple of years.”
Carine is clearly not easily discouraged though and she immediately set about working out the best way forward for Natan – “It was time to begin the big fight,” she says.
Carine approached her local authority – Camden – and was pleasantly surprised to discover that they had a service dedicated to taking care of children like Natan and that every school in the borough has a member of staff whose job it is to ensure their inclusion. “We were so lucky to be living in London rather than France. France is 40 years behind in terms of accepting the condition and promoting therapies.”
With the help of the council, Carine discovered more about provision for Natan, and the things that she could do to help him. “They supported me and advised me on what to do and where to go. It wasn’t an easy task because I was in denial and I had so much to do and digest.”
Carine secured a Statement of Special Educational Needs for Natan, which would be vital in ensuring that he would have the correct support when he was at school and began to consider which school to send him to. “Natan was in a very nurturing and happy British nursery around the corner from home. I looked at a few options and quickly realised that putting him in a French private school wouldn’t help as they can’t accommodate children with special needs – vive la France!”
To Carine’s surprise, after investigating all the options, the best school for Natan turned out to be a local state school. “I’d always heard that the state schools were not very good but then I found Primrose Hill Primary School. This big building welcomed me and my son. It was such a relief when a normal school opened its doors to us. I thought, ‘well, this is another step towards normality’. They were very professional. They interviewed me, visited Natan twice at the nursery, prepared the transition with the key workers and finalised it with a home visit to see Natan in his home environment.”
For Carine, it was a huge relief to have Natan’s schooling sorted out. “I cried like a baby. It’s so important for any parent with a kid with special needs to know that their child can be included in a regular environment like any other kid.”
Natan has now just turned six and Carine is working with his school to ensure that he receives the best education possible. Having researched the various therapies which are recommended for children with autism, Carine is an advocate of ABA (Applied Behavioural Analysis) and has agreed with the school that Natan can have an ABA ‘shadow’ with him at school, rather than the teaching assistant provided by his special needs statement. Natan, too, seems to be content with the way things are going. “He’s so happy to go to school that it makes my day – every day.”
Natan struggles with some things, like speech and dressing himself but is precocious in other areas. “He’s an IT champion,” says Carine, “you should see him manipulate Word and change the font type, size and colour. And he can write all the Jubilee line stations – West to East and back again.”
At home, his education continues, both formally and informally. “We have to teach him everything – things that are natural to other children have to be taught to Natan. It never stops – every minute is an opportunity to learn. He has a very big language delay and is sensitive to certain sounds, particularly the sound of a baby crying. We have to help him a lot and sometimes it’s exhausting – physically and psychologically.” Carine picks Natan up from school early so that he can have ABA and speech therapy sessions at home and she clearly puts a huge amount of time and thought into coordinating his educational programme and ensuring that he is getting the best provision possible. “Every month we have a workshop with the whole team, where we review the previous targets and set up some new ones.”
All the hard work is worth it, though, when Carine sees the progress that Natan is making. “He loves to be touched, and tickled, and he’s really trying to interact with us. He’s also started interacting with his peers, which is fantastic. I realised, with delight, the other day that he actually has friends at school – amazing! He understands basic feelings like happy and sad, which is great for a child with this condition, and allows us to teach him more feelings and him to better understand what’s happening around him.”
Above all, Carine is grateful for the support available to Natan and is allowing herself to feel positive about the future. “I’m really lucky to live in a country where the mindset is open enough to allow a child like Natan to grow almost like any other child. I also have a great husband who’s involved every step of the way. He’s the best dad and Natan would not be where he is without him.”
“Having a child like Natan is a gift, but it’s also a daily struggle – so every tiny step becomes a huge victory. The victories make us go further, stay positive and believe that, one day, Natan will be independent, will have a life on his own and will finally say : “I love you”.
Autism Facts:
• Autism affects nearly 1 in 100 children and adults
• Around four times as many boys as girls are diagnosed with autism
• While all people with autism share certain difficulties, their condition will affect them in different ways. Some people with autism are able to live relatively independent lives but others may have accompanying learning disabilities and need a lifetime of specialist support
• A child can start showing signs of autism from 12 months, and it should be possible to diagnose by the time they are three years old – though many children are not diagnosed until later
Signs of autism include:
• Difficulty with communication, e.g. echoing words or phrases without context
• Difficulty with social interaction and a lack of understanding of emotions
• Lack of imaginative play
• Repetitive behaviours, e.g. stacking or lining up objects
• Sensory differences, e.g. over-sensitivity to loud noises
Resources
Help and information for parents of autistic children is available at:
• www.peach.org.uk
• www.autism.org.uk
• www.ukautism.com
• www.autismonline.org
• www.actionforautism.com
