One of our parents,who wishes to remain anonymous, writes about World Book Day and the impact this seemingly small event has on her, her child and her whole family.
World Book Day when your child has Special Educational Needs
World book day happens every year. It is an event enjoyed by many primary schools. Children are encouraged to celebrate their favourite book by dressing up and sharing the story with other children. The aim of the day is to reiterate the importance of books in everyday life, to remind the children to embrace their favourite authors, encourage them to develop their love of books and to broaden their horizons.
However, for children with special needs, this intense social event and such dramatic change in their daily routine can send shockwaves through them and all around them. Is World Book Day as light-hearted and inclusive as it could be? Or is it encouraging competition between peers? Is it adding extra pressure to already busy parents who fork out to buy, or spend precious time making, an outfit that probably won’t be worn again?
A quick Internet search shows a Dennis the menace outfit selling for £30; Willy Wonka is £37 and Ronald Dahl BFG for a whopping £55.80! Wow. For one day’s wear! I certainly can’t afford that due to pay drop I took when I left my career to care for my son on part time hours. Are we really promoting books or are helping line the pockets of others?
The first book day in the UK began in 1998, as a charity event where several million schoolchildren were given a special £1 World Book Day Book Token which could be redeemed against any book in any UK bookshop. A seemingly lovely idea which soon took off and has somehow turned into a commercial goldmine.
As the parent of a child with complex additional needs in mainstream school who struggles to understand the purpose school at the best of times, I dread this day. My son has Autism and Sensory Processing Disorder, along with other issues which affect his learning, development and communication. I wait tentatively for school to announce the requirements which will be placed on my son (and me). This year has a theme based on hugely popular children’s books which have been around since I was a child. Each key stage has their own theme. Unfortunately, my son isn`t a fan of his allocated theme which we ‘read’ when he was much younger, and subsequently isn`t a happy participant in this year’s World Book Day.
In addition to this, every single detail in our lives requires meticulous planning, social stories, wide and varied discussion and role plays. He hates transition. It makes him anxious. He likes to be in control and understand his surroundings.
He will sense the buzz in the air at school. The excitement levels will unsettle him along with the small details, posters on the walls, chatter he can’t join in with and he will become unsettled. He will know something different is about to occur, but he won`t be sure what or how this affects him. Behind closed doors he will ask me repeatedly about the how, when, why and whats about the day. He will become anxious. He will bite his thumb, and chew harder on his chewy. His sleep will be disturbed. He will become irritable and uncooperative. He may withdraw and choose not to interact with us. He will act silly and become more emotional as he cannot process the information which is overloading him. His reward chart will become meaningless. His toddler brother will be sensitive and touchy.
I will feel stressed, worried and anxious about trying to interpret his behaviours and to help him through the transition. I will more than likely argue with my husband. I will feel drained and tired in work, busy with my job whilst anticipating a phone call from his class teacher telling me he’s hit/punched/bitten someone he considers to be a friend, and that this is unacceptable. School will call it another ‘difficult period’. They might call a meeting and ask me again if I`ve considered specialist school for him (of course we have!). Friends and family will likely tell me I`m too sensitive, that hes just being difficult and I shouldn`t pander to him. I will annoy myself explaining again about his hidden disability as a way of justifying my own feelings. I will worry about the entire day, is his routine being stuck too? Will he have his regular breaks and three sessions of occupational therapy? Will he meltdown?
Mostly though I will feel sad for him and frustrated that I can’t help him feel better about what should be a day of fun.
As a prerequisite of even being considered for an ASD diagnosis I attended several parenting courses. This along with my own research has taught me to prepare him for larger events in a way he understands; Halloween is easy for him; he loves ghostbusters and he will get sweets. Christmas, after all the change in school has passed he knows to expect pressies; new Spider-Man PJ’s and late nights. We research on the iPad together, we have distraction contingencies in place for unexpected events. We do rewards, we do positivity, we do praise.
However, trying to explain to my son that he has to dress up one day of the year as a book character dictated by his school, but it can’t be Spider-Man or a Ghostbuster, is no easy feat.
Books aren’t his thing.
I have read to him every night for six and a half years, it’s just not something he enjoys. He struggles with reading and paying attention for long periods. He has hypermobility, low muscle tone and his fine motor skills are poor; he hates writing. He wants to learn, to communicate and fit in, but this doesn’t come naturally for him. He gets anxious when demands are placed upon him. He fights against change and has internal battles with transition. He always tries his best though it doesn’t always seem like it.
World Book Day doesn’t make sense to my son. He has a uniform for school. A uniform we have practiced putting on for years and years. He doesn’t want to dress up to comply with the theme he doesn’t like. He can’t imagine why he needs to do this.
On the other hand, he doesn’t want to not conform.
He knows he has autism.
He hates being different.
He doesn`t want to stand out.
He wants to fit in.
So many conflicting emotions for him.
And for me! How do I help him?
Should I spend hours making, or splash out on an expensive outfit, if he’s likely to refuse to wear it?
Do I allow Spidey to make another appearance at school again this year and risk him being teased?
Or do I encourage him to wear his uniform, then watch his face drop as the penny drops and he sees his classmates in brightly coloured and appropriate outfits?
Whatever I decide, it won`t be right. Neither of us will feel right.
So what’s the answer?
This very question was asked on one of my many online support group several times this weekend. I saw some great ideas; themed t shirts, sending props in rather than actual dress up, sending the outfit in a bag in case he changes his mind, and allowing outfits that fit their special interests thus disregarding the theme.
What has both amazed and saddened me though is the number of children who refuse to go to school on this specific day. That in their households they accept that they won`t be able to take part in particular days and events due to the impact these have on them. Even more astonishing to me was how many parents choose to keep their child off school for the day to avoid a meltdown situation. Whilst, I completely understand and would never ever judge another parent is this the answer? It shouldn’t be in my opinion, or maybe I`m just not at that stage of our Autism journey yet. My special son loses lots of days off school for various medical appointments, approximately half a day a fortnight at my last count, he can`t afford not to be at school as we are reminded on his reports that his attendance is unsatisfactory. But, on the other hand, how much work will he actually miss on World Book Day? Why aren`t schools taking into account these children’s disabilities and proactively making reasonable adjustments?
It feels to me that World Book Day isn`t that inclusive and the entire point of the event is lost on our SEN children.