Monday, March 12, 2012

A different operating system


The quote above appeared on facebook a few weeks ago and for me it was a eureka moment, it encapsulated what life is like for a person with Autistic Spectrum Disorder, a person like my son, Theo.  In a moment I realised  what I had been struggling to articulate, that Theo is a Mac and the rest of us are PCs and we are trying to operate a Mac like you operate a PC....and if you are not familiar with these two operating systems it's like trying to manually change gear in an automatic car or speak French in Germany...you get my drift.  In other words the normal (what we perceive to be normal) rules do not apply.  When you have a child with Aspergers, many of the normal rules of parenting don't apply and you have to revisit how to parent in a way that can sometimes completely go against your instinct......



This is the first post I have written which is completely dedicated to life with a child with Asperger Syndrome (AS).   Daisy takes up a huge amount of my time and physical energy, yet sometimes life with Theo can be more challenging and emotionally draining (as some of my recent twitter updates have alluded to), so with Theo's permission I thought I would write about life with Aspergers, how we got to diagnosis, what we had wished we had known/seen before and where we are now.

Theo had a confirmed diagnosis relatively late at the age of 13, although I am now finding this is not uncommon.  We also ended up paying for him to be seen by a private neurodevelopmental consultant in order to get that magic piece of paper confirming that he has Aspergers - something I have similarly discovered is not uncommon.  Theo had fallen through the net prior to this time, like many other boys (I say boys because a large proportion of those diagnosed with AS are boys and I think girls would be identified earlier) with the same diagnosis.

Theo is our first child, his birth was difficult, long and traumatic, he became distressed and was delivered by ventouse.  He had colic and cried solidly for three long months, he was a high maintenance baby but I did not realise that at the time as he was my first, it was only when Xanthe came along two years later I realised how high maintenance he was, and even then put it down to the difference between boys and girls.

I question at times was it the birth and difficult start that caused those neurons not to connect, is it a genetic fault?...who knows, we are, as my husband says, meaning making beings, I want an explanation but at the end of the day we have Theo and without AS he would not be Theo.  In fact, I can't imagine what he would be like without AS....

I wonder sometimes if he was not my first and I had been able to compare him against another child then maybe alarm bells would have run with some of his early behaviours, if our eyes had not been taken off the ball by Daisy's arrival and long long hospitalisations would he have received his diagnosis earlier, would things have been different for him now if he had received early intervention, if we had chosen another route for education.....if if if - who knows??? But we are where we are now.

Theo is exceptionally bright, he has this amazing brain and a capacity for information that is incredible, he devours facts, his general knowledge is exceptional, he is an avid reader of newspapers and news websites, he spends hours on You tube, he is fascinated by politics....many of the mums at his primary school used to refer him as the "Little Professor" - I now know that this is a common nickname for boys with AS.  The obessessions started at an early age, I honestly believe that an early obsession with Thomas the Tank Engine should be part of the diagnostic criteria for Aspergers.  That boy could name every train, every story line, he built tracks and replayed stories for hours, he sang the songs, read the books, watched the videos and built the brio railways.  We still have the boxes and boxes of track and trains he used to collect.  Obsessions (sometimes to the exclusion of anything else) are a key feature of AS, now he will become obsessed with the next game to be released or You Tube episode to come out, it's all we will hear about for days on end...He will monologue about the latest obsession, not caring whether the person he is talking to wants to hear about it or not.  He can't pick up those non-verbal clues that say "I am not interested in what you are saying", you cannot be subtle, you have to tell him directly and clearly or at least find someone else (normally a younger child) who is willing to listen for hours on end about the latest PS3 game  or which republican candidate for the American Presidency has the most scandal or which You-tuber makes the most money out of posting online videos.............


He was bullied in primary school, he was not sporty, he was not cool, he loved Doctor Who when all the other boys were swapping Match Attacks cards.  The other children called him a geek.  He became very anxious and cried very easily, this was all happening at the time when Daisy was born.  His world had been turned upside down, he craved order, routine, stability because as a boy with Aspergers that's what he needed.  We were in and out of hospital with Daisy, we could not make plans, we had to constantly change things, routine went out of the window.  Everything you read about parenting a boy with Aspergers tells you to have structure, to communicate what you are doing and stick to the plan.  Poor Theo, at the time when his Asperger's traits were moving from just being a quirky, sweet kid into things that were starting to cause him problems accessing education and socialisation his comfort blanket of familiarity and routine was taken away from him.  We were wrapped up in the world of hospitals and getting our heads around Costello Syndrome, Jules, our next youngest child had not started school yet, and Xanthe was only 5.  We put Theo's behaviours and reactions down to worry and stress.  We did wonder for a while if he was dyspraxic, he was not good at sport, he is left handed and his presentation is appalling, he had problems with buttons and shoe laces.  We mentioned this at his school wondering if there was something more to Theo.  We were told he was exceptionally bright, he was put on the Gifted and Talented programme to stretch him.  With hindsight and knowledge I wish his school had brought the Educational Pyschologist in to test him as alarm bells would have started ringing, labelling him as Gifted and Talented was only part of the answer.  Sadly my experience is that schools in the UK are not good at spotting Autistic traits, children are labelled as naughty, over and over I was told "he needs to concentrate", "he needs to focus", "he needs to improve his handwriting" - no-one stood back and looked at all these behaviours and traits and pieced them together.  It took us, his parents, educating ourselves and seeking an answer (then shelling out £750 for a private diagnosis) to get to the point of undertstanding.  We do feel that the professionals let us down and in turn they let Theo down as he was motivated, disciplined, challenged in a way that was not appropriate to his needs - he was being operated as a PC, when really he is a Mac. This had a profound effect on his self esteem and put him at the mercy of bullies who could exploit his weaknesses.

This inevitably led to a lot of outbursts, meltdowns and anxieties which were labelled as naughtiness - he would be told off for not paying attention infront of the rest of the class and would burst into tears, making him even more of a target for bullies.  In turn, not knowing we would tell him to "man up" and there was liberal use of the naughty step, time out room and removing of priveleges following the advice of Supernanny and all the other so called "parenting" experts.  It's all very well telling a boy off for doing wrong but what if they don't understand that they have done wrong, what if to them rocking on the back of their school chair or getting up to walk around the classroom when everyone else is sitting doing work is their way of dealing with over stimulation and helps to still their mind.  How confusing to be told that this is naughty when you have no control over your actions anyway?

Theo passed the entrance exams to all our local grammar schools and we chose a school with a reputation for discipline for him.  We realised he needed structure and boundaries - which he does.  But what we also know is that he needs people with emotional intelligence to see beyond the behaviours and understand the whys.  The first few years of high school were very difficult, from being a high flyer, grade  A student, his grades slipped and he kept getting detentions for bad behaviour.  We despaired, we knew there was more to it than bad behaviour, Theo is a good boy, he is enthusiastic, polite, well mannered.  What we now realised was that he was stressed, panicking, feeling out of control, as he describes it "there are times when there is just a whirring in my head".  He started to develop very bad migraine headaches and miss time from school.  We were despairing - taking phone calls from irate housemasters while in Great Ormond Street, shouting at Theo for letting us down - it was truly an awful time , especially for Theo who was going through such stress and anxiety but just did not know how to communicate or manage it or even recognise it.

The big crunch point, the bolt of lightning when we realised that there was something more to Theo than being bright, going through puberty, being stressed about Daisy and all the other excuses and explanations that we developed, was when he had the meltdown of all meltdowns.  A meltdown is a term used frequently for the episodes that children with Autism have then things just get too much and they can't cope.  For Theo the trigger was our trip to Disneyworld in Florida  - in hindsight, ah yes good old hindsight, it was a perfect storm waiting to happen..... travelling with twenty other families and support workers, a long haul flight, the unknown of what we were going to do when we got there, the overstimulation of the excitement about the disney experience, his parents panicking about not leaving behind medical supplies, worry that this was a Wish trip for life limited children and the significance of it, worry about his siblings being OK.....the bottom line was that Theo had a major panic attack and would not, could not,  get into the car to go to the airport.  And for once, instead of shouting at him that he was being selfish, letting us down and all the other things we had said to him at similar times over the year we realised that he was feeling scared, and out of control.  And what we now now is that when this happens with a boy with Aspergers, they kick off, they behave in a way that society sees as naughty and our instinct as parents is to punish that naughty behaviour.  But the normal rules don't apply and what they need is (if they will let you) a hug, support and often someone to articulate how they feel on their behalf because they have these feelings but just can't articulate why.....

So we paid the money and got the diagnosis and sat there looking at the report wondering how we had missed all these things over the years.  Yes Daisy was ill and our eyes had been taken off the road but how come other professionals had also missed it, are we that poor in this country at identifying when a child may have something more going on than just naughty behaviour.  Theo's self esteem, in common with many boys with Aspergers going through puberty was at rock bottom, thank goodness at that time a new SENCO (Special education needs co-ordinator) started at his high school, she "gets" autism, she understands how boys on the spectrum tick.  Working closely with her and our local Parent partnership Officer (National Parent Partnership Programme) we have put in place a good system of support for Theo, he is on a 90% timetable so that he has extra time to organise and plan his work, he gets support from specialist therapists and autism practitioners. 

She even arranged for him to be exempted from the compulsary school meals so that he could take in his own food and eat away from the crowds of boys in the house dining room.  Prior to this time we discovered he just was not eating, he has a lot of issues around food, which was no helping his behaviour in the afternoon.  A simple decision has had a huge impact on him.

School is not perfect, we are still dealing with teachers who just don't understand how to teach boys with aspergers.  We still get the homework tickets, the comments that if he just concentrated more he would do better,that he needs to just buckle down and work,  that he disturbs the rest of the class, but the difference is we understand why now and we can work with the Learning Support team to try and help him get the most out of school.

There are so many elements to Theo that we now realise are asperger traits - his limited food tastes, he is hypersensitive to smells and food textures, he has a phobia of bananas, he hates bright lights so would never be happy on a beach holiday, he cannot recognise physical cues that he is ill, getting a migraine, hungry.  When he had swine flue I found him with a 40 degree temperature getting his uniform on to go to school.  His migraines persist, he still gets overloaded and these result in migraines or meltdowns.  He learns differently, he prefers to communicate via the internet and texting (if I need to say something important or significant I have more success sending him a facebook message than doing it face to face!).   What the Asperger diagnosis has done is given us the tools to help him manage, sometimes we are not successful, we are human, we get tired, I get sick of being sworn at and used as a verbal punchbag and I will end up shouting and losing my rag with it, against my best intentions, but we are better able to understand Theo and if we cannot head off the meltdowns, try and prevent them or at least understand the cause.  I know people say you should not label a child, the child is not the diagnosis, but I firmly believe that again different rules apply with AS.  Without this label people would not be able to understand Theo, and learn how to modify their behaviour and communication to support him. 

Family life has changed, now instead of trying to have a happy family day out which would inevitably go pear shaped we will often make plans which don't include Theo, but he is OK with this, he knows that things like a family meal in a restaurant are really not his thing, I have realised that happy families does not mean that we all participate in the same activity.  We have to plan school holidays and major events and put structure in place for him. Christmas can be difficult, it is completely overstimulating for him.   He visits his grandparents in Wales & Scotland for respite - there he is not overstimulated, he has peace and quiet, he has food put in front of him at regular intervals.  We don't tell him off if he sits plugged into his ipod in social situations, that is his comfort blanket, he is not being rude, he just can't cope with all the social interaction,

He is learning to embrace his aspergers and the differences that make him unique, like many boys with his syndrome he has a gift for understanding technology and IT, he has become the house techy, he even makes pocket money setting up other peoples wireless networks and computers.  The path for Theo will not be traditional or "normal" - as perceived by our world.  But he will get there, I hope he ends up working in the high tech industry where his talents and quirkiness will be valued. 

If I could go back I would love to have sent Theo to one of those specialist schools I have read so much about, which is focused on children with high functioning autism, where the environment is not overstimulating, where discipline and motivation is appropriate, where the children's behaviours are understood. But Theo is 15 now, with the support of his SENCO he will get through his GCSEs and onto A levels, and hopefully he will probably do Computer Science at university.



Last year I had one of the proudest moments in my life to date when Theo represented his school in the regional finals of the Jack Petchey Speak Out Competition, I never thought I would see the day when I would watch my own son compete for the honour of his school in anything, but what was even better was his speech "how Aspgerger's has changed the world" - this was his coming out speech, full of pride in how without quirky people like him we would not have had so many of the inventions we rely on daily in our lives, his closing statement summing it up "The Geek shall inherit the earth" - and do you know what, watch this space, because I think my particular geeky son may just to that!


On a final, typical Asperger's note, I discussed this post with Theo and particularly the quote that prompted it, I explained that the penny had dropped when I realised that I am PC and he is a Mac, and he looked at me and said; "But Mum, I'm not a Mac, I'm Opensource, I'm Linux....."



7 comments:

Anonymous said...

Stephanie, I came to your blog via Laura S.'s FB link. Are you a fellow AC'er (you mention grandparents in Wales; just wondered). You write brilliantly, and your and Theo's story is oh-so-familiar. Our son is 17, was diagnosed at 7. He was in a small Quaker school that was a perfect environment until age 11 (middle school) when anxiety hit him greatly. We found the best support in public (free) schools, but still varying levels of support for AS depending on the school. Our sons' interests and talents sound very similar (and food issues!). For the beginning of high school, he went to a private international school that turned out to be disastrous because no one understood AS. So, we searched and found the public high school with the very best AS support for bright kids with programs to help them develop the skills they need to transition to independent adulthood. I hope you can find similar levels of support because our son (who embraced AS as a 7 year old, and is definitely open source Linux) has learned to operate in both MAC and PC OS, is thriving in his next-to-last year, is taking all AP/IB classes (will have full year + of university credit upon graduation), has a few good friends, never has discipline issues or meltdowns or is disrespectful to parents or adults or anyone else (oh, those early teen years--ugh!), and best of all, he is happy and confident. He is being recruited heavily by many top universities, but we all hope he can stay within an few hours' drive because we can't imagine not seeing him for long stretches. His is our one and only, and it definitely made it possible to be very child-centric, but we've had our share of other health, stress, unemployment, bereavement, etc., too. I am certain you are going to have many, many more proud moments with Theo, and we wish your whole family the very best. Is your son still a Dr. Who fan? Ours is! Cheers, Sara

Stephanie Nimmo said...

Hi Sara - yes I'm an AC alumna, Laura and I were house mates. Thanks for your comments, so encouraging. It's hard work but those moments make it wothwhile. Looking ti the next phaseof Theo's education now, 6th Form , then Uni ... So many challenges. Dr Who still features but currently replaced with Japanese Anime!!!

Anonymous said...

I am AC '74. Laura and I met via a "raising children bilingually" net group (my husband is Dutch), and connected in Seattle about 10 years ago (we live in Minnesota) and have stayed in touch ever since. OMG, Stefan is so into anime! He has taken up manga drawing as well (do you know Deviant Art, the art FB? many of his friends are via that site). He just finished one of his major uni entrance exams, and last night, as a celebration, I gave him a DVD of "Princess Mononoko" (Miyazaki), which he was the only Miyazaki he had never seen. We all saw "Arietty" a few weeks ago.

By the way, one of my good AC friends, whom I believe is AC '78,(we met teaching Extra Mural at AC one summer)is the grand-daughter of William Hartnell, the original Dr. Who. She works at the BBC and for a long time was a producer of "Blue Peter."

My husband, Stefan and I all watched Theo's speech last night. Brilliant! Stefan is a Nikola Tesla and Einstein devotee, both on the spectrum. Does Theo build computers? Stefan built his a few Christmas holidays ago by teaching himself via Youtube! Yes, the geeks shall inherit the earth and guide the rest of us into the future. Cheers! Sara

Caroline - CER1389@aol.com said...

I found your blog through another site talking about Aspergers. . I am a University student who works with Aspergic sufferers lower down the University tier.
I help them adapt to the massive social upheaval they face, and provide a friendly face and a bit of support for them. I work alongside a fantastic University team who provide so much support.

The first thing to say is thank you so much for that first quote. Whilst, I understand the differences between myself and the students I work with, I have really struggled to explain it to others. Until you are surrounded by their world, you can't understand it. I feel like that quote is going to help me explain to friends, family, and also the students who are in halls/on the course with the Aspergic students to understand and empathise more.

The second reason I commented (aside to say what a fantastic speech Theo gave) was to say that I work with Aspergic students at University. They can get to University, and adapt to living away from home. They too do computer science. My students have their Aspergers in common, intelligence, a great sense of humour and their love for computers ... but they also have incredibly supportive families. That is the main reason they get to University and they succeed.

It is also lovely watching them make friends with each other. For years they've struggled in a world where no one understands how their world operates. Yet they've come to do computer sciences at University and there are six Aspergers sufferers. Suddenly, they are in a world with people that operate under the same rules, don't mind sitting in silence for hours, and are willing to talk all things geek. It's heart warming.

Wishing you, your family and Theo all the best in the future. I have every reason to believe he will change the world somehow.

Caroline

h0peful mummy said...

I have read your story and watched the link. Your journey to date may have been long and difficult at times and you may have made different choices and decisions along the way but I am sure that you are so very proud of Theo - he is a wonderful speaker quite the comedian!
I laughed at his Thomas the Tank Engine obsession and could imagine it just being a boy thing, I loved his take on "the geek will inherit the earth" - and he IS right! - but i guffawed at his Linux quote - i'm married to an IT geek!
Thank you for sharing your story with us - Theo is the man he is today because of his journey to date and he will find his way "to inherit the earth".
I'm popping over from the LAB Showcase and I've been reading your posts - I look forward to hearing more about you and your family

Looking for Blue Sky said...

This was a really interesting read for me, as I have a 10 yr old with aspergers and I also missed the signs, as I thought his behaviour was due to a very bad marriage break up. His brilliant class teacher finally suggested aspergers. He is now in an aspergers unit, but I would love if there was a specialist secondary school as you describe as I am so afraid that he will not cope when he has to move. And like your son, he is gifted. Oh and I also have a daughter with complex special needs too! Thanks for sharing in Love All Blogs x

Happy, but forgotten Me. said...

I found your blog today by accident while looking youtube videos of kids with rare syndromes. mostly because of curiousity. I was watching video about a girl with same syndrome as your daughter, and she seemed like a very lovely and happy girl despite of having her syndrome and it made me wanna know more about these kids, so after using google to find out more about this disease, i saw your blog.Your daughter also seems so lovely and i wish good luck to you and your family in life.
Which made me to write a comment was, when i noticed your oldest son has asperger's syndrome. I'm young woman in her twenties, and i live together with my parents and two brothers. I was born in the middle and always considered myself as lucky all the ways when i think of my brothers. When i was little, my big brother was first diagnosed with difficulties in reading, so he needed to double one grade in a special school for kids with learning problems. And later when my little brother started school, he was diagnosed with ADHD and he also needed to double grade, in a special school also. Later they changed his diagnose to asperger's sydrome, since teachers say he is nothing near those kids in same class with ADHD. We also now suspect that my big brother got wrong diagnosis, and he might be same with my little brother. In 90's asperger's syndrome wasn't so common and that's why many kids with it have been diagnosed wrongly. My big brother is already 22, and he doesn't wanna go to get new diagnosis.
I find myself lucky, since i'm girl and born in the middle without having any problems at school. Well i was bullied my whole school life because of having different opinions and being just " different ". That caused me to have deep depression and while talking to psychologist, she told me i have " middle child's syndrome " specially when my both brothers are special cases and they need more attention. Because of being a girl and born in the middle, i was often though to survive on my own. And when i wanted to tell my parents about having depression, my mom was laughing at me and said " you? ha! why? there is nothing wrong with you! ". I often felt that because of being a girl and in the middle and a child without any diagnosed syndromes, they wish me to be at least one _normal_ child of the family. Sometimes i did suspect that i also have asperger's syndrome since i'm always curious to learn a lot new things speding a lot time reading wikipedia about different topics. There is also many similarities between me and my little brother. One thing i noticed is that he doesn't understand how to read clock. He does understand digital time, but when it comes to round clock, he just doesnt understand it. In my case, i do know how to read it, but i'm very slow and that has caused me to have trauma of having real clock on my wrist haha.
 Luckily my little brother doesn't have so deep asperger otherwise. He does have his own special needs, but he never acted so that it would be me feel he is special. He has only one good friend, which is kinda sad. Other than that he spends his days playing computer games. He is mostly afraid to start something new, like going into a new places with a lot people and to step into working life/ new schools.
But my main reason to write you a comment was to tell about my case, how i ended up having depression because of being left without attention because of my brothers with special needs. I never blame my brothers since i understand that they need more attention than i do. I know that you probably show love to your all kids and i just wanted to say that keep it that way. Try to spend time to think your other children as much as the ones with special needs. Best of luck to your family, never give up! Your blog gives strength to many people with similar life experiences.
Ps. Im sorry about my english if it doesn't seem right, i'm not fluent in english. ( I'm from Finland, North Europe )