Recently my fiancé surprised me with two tickets for an award winning play that I had been dying to see since it came out. I fancy myself as a bit of a psychologist so this was right up my street. ‘The Curious Incident Of a Dog in The Night-Time’ is a story of a 15-year-old boy who describes himself as “a mathematician with some behavioural difficulties”. The play is is based on a novel by Mark Haddon. In 2009 Mark, when interviewed about the book described it as “not a book about Aspergers….if anything it’s a novel about difference, about being an outsider, about seeing the world in a surprising and revealing way. The book is not specifically about any specific disorder.” Amongst other subjects, the play depicts a loving but sometimes difficult relationship between Christopher and his well meaning parents. The play made me think about the challenges faced by parents of children who are seen by society as slightly different in some way, and how that impacts on their own lives. I was extremely shy as a child and I have to say I was a bit of a misfit. I know how even such a minor thing emotionally affected my parents. We are all guilty of judging the parents of misbehaving children, children who throw tantrums in supermarkets, roll around on the street, or scream in public until their faces turn bright red. Do we ever stop to think that there might be more to the story?
An old friend of mine from school has two gorgeous boys, both with large brown eyes. Yaqoob is five and Azzam in seven. In many ways they are just like any other boys. They love playing with wii,ps, cars trucks and riding horses but there is something that differentiates them from majority of other children. When they were toddlers they were diagnosed with ASD.
ASD (autism spectrum disorder) is a condition with a spectrum of disorders so every ASD person is slightly different and requires a different approach and ways of communicating. In general ASD is a condition that affects social interaction, communication, interests and behaviour. In Britain 1 in 100 kids have ASD diagnosis. As there has been more awareness of the condition and it is easier to diagnose then the numbers have been on the increase since the 90’s.
I asked their mum Farah to share with me a typical day in their life and to talk about the challenges she faces raising two boys with ASD.
‘Getting two ASD children motivated for school can be challenging for a lot parents. We have to plan things with great precision. There are numerous factors to consider; what mood they are in that day, the weather, how well they slept…’
‘I normally get up at 6am to get myself ready before the kits get up. Once they are up I have no time for myself. The boys get up at 6.20 and we all jump into bed together for some morning cuddles. This is our favourite time of the day.’
‘After that I give kids their breakfast. Azzam is good at eating but Yagoob started having problems with food when he was just a baby. He generally has sensory issues with food and sound. Throughout breakfast they need to be engrossed in their Ipads. I would not normally condone this but it is necessary for some ASD kids to be continually occupied. Azzam sits at the table and eats, where Yaqoob flits from a carpeted area to hard floor by transporting his toast and his toys with him.’
‘Getting them to brush their teeth is a daily challenge. Azzam is bit more cooperative then his sibling and require a different approach to encourage him and for him to understand. Yaqoob has a three process approach with brushing his teeth; manual, braun and then sonicare (sonicare that we do together.) It is much easier now. I used have to pin them down on the floor in order to brush their teeth.’
‘I have to encourage both children to wash hands and face. I dress both children from head to toe. Azzam is getting better as he gets older, but Yaqoob needs a lot of care in this department. I need to use the ipad for Yaqoob to stay in one place. This can take up to 15-20 minutes per child.’
‘While the kids are at school I get all the housework done as well as organising and applying for any additional support for the boys.’
‘Once they get home I help them out with their homework. (some children cant do homework as they get so worked up and frustrated. His can lead to melt downs and some cases violent behaviour. Some ASD kids find basic thing hard to grasp and others areas they excel in).’
‘I usually have to prepare for this the night before. Azzam is pre-verbal so he hasn’t got the vocabulary of a ‘normal’ seven year old child. Work has to be simplified and broken into stages in order for him to understand it.’
‘After that we have dinner. It is the same routine as for breakfast.’
‘I give them a bath or a shower before preparing them for sleep. Getting the kids ready for this be can be very draining for some parents as ASD children take longer to sleep or require very little sleep. A lot of parents are up till the early hours of the morning. Some parents need Melatonin as ASD kids don’t produce enough of this hormone. I chose not to give it to the boys as there not enough study to reassure me that it is safe. Yaqoob is five and I only got him out of my bed five month a go, and that was sheer potluck!’
‘When the kids get to sleep, an ASD parents day doesn’t end. We have to take advantage of this time to do apply for benefits, support, special schools and to prepare for the next day. We need to do the housework, laundry, ironing, or sometimes just cry from the draining day.’
‘Mainstream schools are one of the biggest sources of stress for an ASD parents. They are often not equipped to deal with children with special needs. I endured three years of hell with my son’s previous school that in the end I was forced had to take legal action. The Local Education Authority prefers to put SEN (special educational needs) children into mainstream schools as its more cost effective. It can costs LEA 30-40k a year to send each child to a Special Education School. So again you have to fight tooth and nail and convince professionals that your son/daughter needs this type of education. For me it took a year and three months to get my boys into a special school. For some parents it’s longer. It is very mentally draining.’
‘School holidays can be so daunting for some parents. A lot of ASD children can’t cope in a social environment. Doing basic things like going to the park or shopping can cause meltdowns. You may not know what the trigger might be so you can not prepare for them. This might put some parents off taking their children out. They are reluctant to expose their child to any negative attention. All the onlooker sees is a badly behaved child. Most people aren’t aware of autism so they can be judgmental.’
‘I had to make a decision not to go abroad. Haven’t been on holiday for 7 years. It is very stressful for the kids to take them out of their routine. Even going away to a different city can be daunting for a child.’
‘Although I have made great sacrifices for my children and my daily life is governed by them I would not change them for the world. They have taught me so much and I don’t see them through their condition, I see them as individuals, with their own little quirks and personalities. ’
After seeing the play ‘The curious incident of the dog in the nigh time’ and speaking to my friend, it struck me how the society still makes us feel like being ordinary is the best way to be. But if we are all true to ourselves we are all unique in some way. Sometimes that makes things a little bit more challenging, but most of the time we would never change those things about others or ourselves. Those things are what makes us individual and special. As one autistic girl once said ‘I would never want to be ordinary, I want to be extraordinary.’