Asperger syndrome (AS), also known as Asperger’s, is a developmental disorder characterized by significant difficulties in social interaction and nonverbal communication, along with restricted and repetitive patterns of behavior and interests. As a milder autism spectrum disorder (ASD), it differs from other ASDs by relatively normal language and intelligence. Although not required for diagnosis, physical clumsiness and unusual use of language are common. Signs usually begin before two years old and typically last for a person’s entire life
Developmental coordination disorder (DCD), also known as developmental dyspraxia or simply dyspraxia, is a chronic neurological disorder beginning in childhood. It is also known to affect planning of movements and co-ordination as a result of brain messages not being accurately transmitted to the body. Impairments in skilled motor movements per a child’s chronological age which must interfere with activities of daily living. A diagnosis of DCD is then reached only in the absence of other neurological impairments like cerebral palsy, muscular dystrophy, multiple sclerosis or Parkinson’s disease. According to CanChild in Canada, this disorder affects 5 to 6 percent of school-aged children; however this disorder does progress towards adulthood, therefore making it a lifelong condition.
My boy, my second child, was born at 8.29 pm on Wednesday February 7th 2001 to the closing credits of Coronation Street.
He was 10lbs 8 oz and was induced 2 weeks early He then breastfed every half an hour, 24 hours a day. I had to keep a Mars bar in my bag at all times incase I felt faint from exhaustion. He was a beautiful,, squishy, smiley, gorgeous gift.
When he was 3 years old, his nursery teacher voiced concerns about his balance and thought there was a possibility of him having dyspraxia. We were referred to a two day assessment by physios, psychologists and experts in the field. He made playmobil scenes in perfect symmetry, tried to throw and catch a ball, answered questions. After the 2 days we were called into the office and told that our son had a dual diagnosis of Dyspraxia and Aspergers Syndrome. We left clutching at leaflets and ‘useful’ phone numbers with absolutely no idea what this all meant.
We read books and Googled. We sat in silences contemplating what this meant. The autistic spectrum. The impact of severe developmental Co-ordination delay. Countless meetings at school, learning goals and support plans. Physio sessions and hours in the hydrotherapy pool trying to get him to achieve just a couple of strokes. Watching him playing in the school yard by himself. A whole epic storyline evolving in his mind as he ran back and forth with his imaginary lightsabre. Arranging for other kids to come over and trying to mould friendships on his behalf. His beautiful eccentricities, his ability to take centre stage at the school plays and make people laugh.
‘But its just a label isn’t it? He seems fine to me!’
The cliches; Thomas the Tank Engine (repetetiveness and predictability), Lego, Star Wars, Playmobil, obsession, frustration, meltdowns. The fear of the unknown, social stories. Finding clothes he would wear that didn’t feel alien against his sensitive skin. Removing all labels from clothes, only buying shoes with velcro fastening.
‘You mollycoddle him. He has to learn…’
Holding him tight while his relief of holding in the fear and tension all day floods out in one almighty torade. His ‘tics’. The way he used to have to touch the road and turn around while crossing. The fear of the sensory overload: Crowds, cinemas, parties..rather be at home playing batman.
Getting up at 5am to take him to the park when no-one else was around so he could practice riding a bike. No sleepovers and diminishing trips to see family because of strange beds, strange foods, strange noises. Mind-numbing frustration at how the system let our child down again and again and again. Chronic eczema brought on by the stress of having to fit in to the ‘normal’ environment. We learnt more. We became fiercely protective. Charts to make stuff clearer. To put daily routines in order. Get up.Tick. Brush teeth. Tick. No football. No swimming. No bike riding. The cruelty of this dual diagnosis and the way it creates bigger battles. Everybody loved him. He was clever and witty and drew zillions of pages of crazy cartoons in black biro. He liked to organise things into a storyboard. He wrote backwards and illustrated words with strange, weird and wonderful creatures.
‘He needs to be made to take part, its not real life otherwise’
Running paralell, the empathy and affinity with me. The way he could sense my sadness. The way he held my hand and told me he loved me to the moon and back. His primary school refused to support our request for a statement, assuring us that he managed well. The transition to secondary school was one of the most stressfull periods of my life. We had no choice but to make him go. Every morning he pleaded with me:
‘Please mum! Don’t make me go’
His beautiful eyes full of tears, he scratched at his arms as his eczema flared. For a month i dutifully drove him to the entrance. Sometimes a support teacher would come and escort him into school and I would drive away, my heart breaking and tears rolling down my face. He got bullied on his way home. He cried himself to sleep. I cried myself to sleep. The school couldn’t support him. They didn’t even know what dyspraxia was. They put him in the behavioural problems class where he was left alone and other kids threw rulers and pencil sharpeners. He couldn’t handle their rule breaking. His friends from primary drifted off.
One morning I sat in the car with him for over half an hour, my gut in knots, my eyes red and tearfull as he begged me not to make him go in, sobbing and pleading for me to make that choice. So I did. My maternal instinct swelled and I knew enough was enough. My son was a desperately unhappy and depressed young man. I turned the ignition on and we drove away and the relief that we both felt was overwhelming. I emailed school and told them he wouldn’t be coming back. He was out of school for a year. I was running my own cafe at the time and he used to spend alot of time there with me, half heartedly doing some work school provided and then illustrating it with monsters and creatures from that story in his amazing mind. School allocated some money to a ‘specialist support mentor’. This is how it went:
Day 1: He met F in our cafe. He seemed kind and had twinkly eyes and an Irish lilt. He talked to Felix about his interests and arranged to take him to the comic shop in town the following day.
Day 2: He met my son in the cafe again. F was overriding his fear of public transport by his excitement at buying comics. His current obsession was Manga. The ‘mentor’ sat Felix down. Told him he was going to take him up to school and that he wasn’t helping himself by refusing to go. He said he couldn’t work with him if he wasn’t prepared to help himself. Then he left. F was let down, in a state of acute anxiety and disbelief..as was I. Despite my challenging this mans’ behaviour, he was adamant that it was appropriate, and I was left serving customers, with my son shadowing me and asking why? I wrote a complaint to school and never had a response. One step forward and 5 steps back.
Social isolation is cruel and the impact is low self esteem and increased agrophobia. The longer F was out of school the safer he felt being at home because nothing could hurt him there. Noone could let him down and there were no shocks or sensory challenges. No comparisons to boys his age playing football, making friends, developing interests in girls.
We were flailing around trying to keep our family together, to run a business and give time to our daughter as well, who has always been in a degree of denial about the validity of her brother’s diagnosis. It definately impacted our family life because there was so much he couldn’t manage: Trips out, family meals, family holidays, shopping trips, cinema, swimming. Stuff that ‘normal’ families do. I often wonder how we have got through this in retrospect. There is no respite. Even now, it is constant. Mentally I have been pushed to my absolute limits. We all have.
Ironically enough and also because legally they were still responsible for his education, his secondary school said they would support us in helping to get Felix a statement. The battle began, the sourcing of reports and medical records, hours spent working through the wording to make sure we left no oppurtunity to be turned down. With support from our Parent Partnership worker we won.
We went to visit a school with an integrated resource for kids on the autistic spectrum. They were passionate about looking after them. Passionate about them reaching their potential. They were also jaded by lack of resources and staff and massively oversubscribed. It was the first time we felt like someone was actually on our side and were relieved when F was offered a place at the school.
So, after a year out of the educational system, F was back in. From day one he decided he was going to try really hard to ‘fit in’ with the most popular gang of boys in the school. It wasn’t that successfull and he held in all that pressure, expectation and maintenance of being someone he wasn’t all day then, he would come home and let it all out. He would punch the wall and scratch his arms til they were red and raw. Being a teenage boy and having aspergers and dyspraxia is a very cruel combination. The hormones were raging, he wanted to do all the things his ‘friends’ were doing but all these things fed his fears and anxieties and diminished his self esteem further. The morning battles began again and he started to miss school quite abit, but at the same time showed more courage and grace than I have ever seen.
‘You wrap him in cotton wool’
So school continued to be a rocky road, for us, the fact that he would actually go in and take part in most of his lessons was a bonus and we were referred to CAMHS (Child and Adolescent Mental Health). The waiting time was a minimum of 6 months. We were eventually assigned a therapist who, for once F took too. She promised she would work with him as long as it takes. A month later we were told she had left and we would be assigned a new therapist. A few weeks later we were and 6 weeks later were told she too had been signed off and couldn’t work with him anymore. We saw a Doctor who prescribed him medication for his anxiety. We have a new worker now who is newly qualified and looks slightly intimidated by F’s 6 foot 7 stature and the black cloud which can sometimes follow him into the waiting room.
I recently took him for a session with a CBT therapist. but she suggested that we pay a mentor to be his friend. That came to an abrupt end.
F was turned down when his Disability Living Allowance was turned into Personal Independence Payments. We are awaiting a tribunal date. Current waiting time: 26 weeks. We have had to make trips to the other side of town to see a Citizen’s Advice worker to go through the form with a fine tooth comb and to be alerted to all the ways that they try to catch you out. We are used to fighting now. As parents, we have had to fight for everything for our son. Our goals are things that may seem suprising to some: To go on a bus, to go to the shop, to go into Costa and buy himself a raspberry creamy cooler! Him and his sister have a difficult relationship. They dont really talk, it’s sad and I hope that one day they will be close. Often I think the strain we are under is not caused by the Aspergers or the dyspraxia but by the lack of support, other people’s lack of understanding and all the bloody bureacracy.
Parents and kids and young people all over the country are being let down by cuts to services, lack of mental health support and by forms that require a phd to fill in properly. We are propably all on the spectrum to some degree or another!
When I started writing this blog and thinking about what we have all been through in the last 16 years I feel exhausted! What a journey…I guess we have grown fiercely protective of our family, we have had to be. Sometimes its all very delicate and we have to deal with stuff only we know how.
The flip side of any negativity is that our son is a truly outstanding, funny, intelligent, brave and beautiful soul. He has a passion and knowledge of film that is incredible. He has taught me so much and I am determined to keep up the fight for anything that enables him to go onto reach his full potential, one step at a time.
‘Do not underestimate yourself by comparing yourself with others. It’s our differences that make us unique and beautiful’