bluephinAsperger's Child - The Day Jack Flapped
September 19th 2006 10:16
I knew there was something different about my child when he started flapping at me. Up until then I’d put his little quirks down to his developing personality and individuality. Looking back I was probably in denial, not wanting to acknowledge that my child was less than perfect. However, when his Kindergarten teacher started expressing her concerns about his development I realized I could no longer continue to hide behind a wall of ignorance.
While I waited for a diagnosis I had to write down everything I could remember about my son’s birth and toddler years. Sifting through photo’s and baby albums I covered five years of precious and irreplaceable memories, squeezing them onto an A4 piece of paper. The first time he smiled, the first tooth, the first step. They were all memories that every parent relives with a fond smile and quiet tear at how quickly time passes.
Then there were the memories that baffled me. His obsession with shutting doors, the hatred of hats on his head, the tantrums for no apparent reason. His fear of the vacuum cleaner, the hair dryer and washing machine. Many different traits emerged as he grew and developed. Each one was as mystifying as the last but none of them made me love him any less.
Of all his idiosyncrasies the one that touched me the most was the flapping. The first time he flapped was at four. This was the age at which he truly began to shine and the age at which I sub-consciously realized that my child was different. He would sit for hours drawing – the same picture over and over again. When he had perfected that picture then he would start another – over and over again until it reflected what he saw in his mind’s eye.
‘Mummy, see, see. What did I draw?’ His excited voice would shrill in my ear as he waved a piece of paper in front of my face.
Taking it from him I would look at the picture and oh, so carefully, guess at what it was. The wrong answer could send him into a melt down. If I gave the right answer then I would be rewarded with a grin that would make even the unhappiest person smile.
On one Sunday it had been raining outside so indoor play was how we had whittled away the hours. He’d done drawing after drawing, each one painstakingly etched with his lead pencil. He came up to me with one of his finished products, a boat sailing on the water. Inside it sat a little boy with a fishing rod, the line cast out to sea.
‘It’s a boat Jack, who’s the little boy?’ I asked as I breathed a sigh of relief that today at least there would be no tantrum because I guessed wrong. I waited for his excited grin; instead I witnessed something that he had never done before.
Not answering my question, he stood in front of me, eyes averted, a grin on his face. Then suddenly he raised his hands and began flapping them, like a bird trying to take off from the ground. At the same time, he opened his mount and panted, the action reminding me of a dog waiting for a treat from its’ master.
I sat there dumbfounded. I just could not comprehend what he was doing, but I knew it wasn’t normal. I grabbed his hands and held them in mine, in an effort to stop them from waving back and forth, back and forth. But when I did so, he began to cry, the tears streaming from his beautiful brown eyes. He screamed his nose pressed again mine, his face red and wet. Looking back now, I get so angry with myself. I’d tried to stop my son from being himself.
Now when he flaps, though at times I find it distressing, I let him go. The movement reminds me of a colourful, bright bird, flapping its’ wings as it tries to escape from its wire prison. One day, I hope Jack escapes from the gilded cage he lives in, but if he never does I’ll be content with knowing that he is happy there.
While I waited for a diagnosis I had to write down everything I could remember about my son’s birth and toddler years. Sifting through photo’s and baby albums I covered five years of precious and irreplaceable memories, squeezing them onto an A4 piece of paper. The first time he smiled, the first tooth, the first step. They were all memories that every parent relives with a fond smile and quiet tear at how quickly time passes.
Jack loves to draw people
Then there were the memories that baffled me. His obsession with shutting doors, the hatred of hats on his head, the tantrums for no apparent reason. His fear of the vacuum cleaner, the hair dryer and washing machine. Many different traits emerged as he grew and developed. Each one was as mystifying as the last but none of them made me love him any less.
Of all his idiosyncrasies the one that touched me the most was the flapping. The first time he flapped was at four. This was the age at which he truly began to shine and the age at which I sub-consciously realized that my child was different. He would sit for hours drawing – the same picture over and over again. When he had perfected that picture then he would start another – over and over again until it reflected what he saw in his mind’s eye.
One of Jack's paintings
‘Mummy, see, see. What did I draw?’ His excited voice would shrill in my ear as he waved a piece of paper in front of my face.
Taking it from him I would look at the picture and oh, so carefully, guess at what it was. The wrong answer could send him into a melt down. If I gave the right answer then I would be rewarded with a grin that would make even the unhappiest person smile.
On one Sunday it had been raining outside so indoor play was how we had whittled away the hours. He’d done drawing after drawing, each one painstakingly etched with his lead pencil. He came up to me with one of his finished products, a boat sailing on the water. Inside it sat a little boy with a fishing rod, the line cast out to sea.
‘It’s a boat Jack, who’s the little boy?’ I asked as I breathed a sigh of relief that today at least there would be no tantrum because I guessed wrong. I waited for his excited grin; instead I witnessed something that he had never done before.
Not answering my question, he stood in front of me, eyes averted, a grin on his face. Then suddenly he raised his hands and began flapping them, like a bird trying to take off from the ground. At the same time, he opened his mount and panted, the action reminding me of a dog waiting for a treat from its’ master.
I sat there dumbfounded. I just could not comprehend what he was doing, but I knew it wasn’t normal. I grabbed his hands and held them in mine, in an effort to stop them from waving back and forth, back and forth. But when I did so, he began to cry, the tears streaming from his beautiful brown eyes. He screamed his nose pressed again mine, his face red and wet. Looking back now, I get so angry with myself. I’d tried to stop my son from being himself.
Now when he flaps, though at times I find it distressing, I let him go. The movement reminds me of a colourful, bright bird, flapping its’ wings as it tries to escape from its wire prison. One day, I hope Jack escapes from the gilded cage he lives in, but if he never does I’ll be content with knowing that he is happy there.
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Comment by Angry Little Doll
Cinico, this has got to be the most touching post I've ever read.
Children can be so intense that as parents, we tend to dismiss obsessive traits as idiosyncratic behaviour. But here is certainly a moment when a bell rings in your head and you know that there is something wrong. And that's so hard a place to enter.
Wow.
Comment by Cinico
Small Business Scope
Thanks for dropping by!
Comment by Adrian
Philosophy Blog
This was a touching bit:
"Taking it from him I would look at the picture and oh, so carefully, guess at what it was. The wrong answer could send him into a melt down. If I gave the right answer then I would be rewarded with a grin that would make even the unhappiest person smile."
Incidentally, are there any special times when he flaps? Is it when he's particularly happy?
Comment by Cinico
Small Business Scope
Thanks for your comment.
Jack flaps when he is distressed (out of his 'comfort zone'), angry and when he's excited.
Eg. I'll tell him we're going to the movies and he'll flap so much that I swear he's going to take off!
He'll often flap when he's being praised as well.
It acts as a good indicator for me to pick up on when he is particularly happy or feeling very low.
Comment by Fingertip Titans Unite
Idiots Among Us
Fingertip Titans
Comment by Cinico
Small Business Scope
Thanks for your comment.
He is precious, but then so are all children! You've definately got your hands full with a 2 yr old and a 2 month old!
Definately have a big mummy bear - though I call it the 'crocodile' because I tend to snap more than growl! People who don't know Jack often make comments on his behaviour, like the hand flapping and panting, some people can actually be quite rude. It's amazing how people think they have a right to come up to your child and say 'son, you're too old to that - you're not a baby', and of course Jack doesn't understand and you can see the hurt on his face. I feel like slapping some sense into some people but really it's just a lack of knowledge and we've all been guilty of that!
Comment by Anonymous
It's very scary, but I always remember that the diagnosis is only part of who he is. I love him to pieces, and he is a delight. I wish you both the best upon your journey.
Comment by Anonymous
Comment by Becky
For seven years my child I suspect has been struggling with mild aspergers and flapping....oh the flapping...Yes!! Every time she gets excited or she is using her imagination those hands flap like a bird. Even when I'm in another room I hear the hands flapping against a book as she makes up her own story and pretends it's in the "real" book !
Her headmaster tried to hold her hands down like trapping a bird's wings, told her off, teacher too, and now some nasty children say "noone likes you because you flap all the time".
I came home crying yesterday but reading your description of your beautiful son has given me hope.
It sounds just like my Ruby, she draws Mary Queen Of Scots over and over, getting the collars and veils right !!
Thankyou xxxxxxxxxxxxxxxxxxxxxxxxxxxxx xxx
It may take at least 3 months to see a paedaetrician, but I feel safe having read your message.
Comment by Anonymous
Comment by Anonymous
Comment by shebooo
Comment by Tea_Time
I also have a Michael (was 6 in March 2008) who hand flaps and so I have found these posts fascinating. His diagnosis is 'global developmental delay' which means they don't know. He's settled into school now (last year was awful as he wasn't ready and behaved very badly) and as he has a 'Statement', in the UK system he has 1 to 1 support all day. However he has progressed amazingly in so many ways that I hope he will eventually lose the 'delay' label.
The hand flapping is one symptom that shows him up as different though. He does it when he's excited and happy, for example when he's telling his favourite story, or he's thinking about something he loves doing. I so empathise with the mum who felt awful for stopping her child doing this - I have never stopped him but I have been in situations where I don't know whether to shield him from the world or shield the world from him (the last sounds so ridiculous and it is but it's how you feel when you know other people will find his behaviour hard to cope with). I suppose I'm still struggling to come to terms with it and find my courage to defend him at all costs.
Comment by Anonymous
I love Ruby's hand flapping, I miss it when she's at school. She also taps excitedly on her books when reading. I just find it hard to believe that it wasn't diagnosed earlier and she had to go through teasing and being told not to flap. She said being told not to flap is like telling a bird not to fly!
She loves looking at pictures of places from the sky/aerial views, so she is my little bird and she makes me laugh as she is a great mimic as she absorbs so much around her.
Comment by Aspergers
I'm an 18yr old aspergers individual that was only diagnosed recently. when i am by myself i will flap my arms frantically, only when i"m by myself. this is one thing my mother tried to stop me doing whilst at home and it caused more harm than good. as we grow older we do notice that there is a difference between ourselves and others, especially with the bullying that majority of us receive.
before my diagnosis the only opinion my previous school had for someone like me was that i was being 'interfered with' and none of the bullies were punished. after they recognised i had AS the bullying remained, however i wasn't aware of what was happening around me as i would preoccupy myself with a special interest. this would incur the flapping of my hands as i got further immersed in an interest.
as we find it difficult to show empathy through facial expressions we need something else to express our feelings. when I'm happy i flap faster & wen I'm depressed/angry i will flap at a slightly slower speed. thus this is a way for us to express ourselves and we should be left to free do this or taught another way that doesn't stand out in public.When i am in public i have after about 5 years been able to change the flapping to a constant eye twitch.
if this post would still go it would be good as anything in psychology is my special interest and as i do have AS you can get an inside opinion. A world without empathy or lack of empathy is quite a miserable lifestyle to have, but we must all learn to live with it as no one is perfect, we are all unique.
Comment by Tea_Time
Good luck with studying psychology - is that in general or are you doing qualifications?
Comment by Aspergers
Tea_time as i see everyone still continues to flap their hands when they are having an extremely good or joyful moment- if you look at people who win game shows, most of them will flap their entire arms at the sheer fact of whatever is on there mind. As for your other questions I'm am not sure. I currently will be sitting my HSC in 5 weeks and have applied for psychology, even if i don't succeed into entering university i will still educate myself further in the field of psychology, preferably i would like to be a child psych dealing with people with ADHD and other disorders similar, in which AS is very similar to ADHD.
the only study that i have heard about is whether or not the fetal testosterone levels are what causes AS- 90,000 participants.
Although the flapping is present some people with and without AS, like myself, may have physical problems such as dysdiadokinesia- which doesn't allow proper fluent hand movements. So the flapping may result in a whole arm movement, however in saying this i was able to get movement in my hands by the age of 5 and normal flapping persisted.
Another good thing about others like myself is that we have extremely good long term memory. When i was only 2 i can remember going to a drive in cinema and watching Jurassic Park, in which most children wouldn't remember.
If you have any other questions that anyone would like to hear from someone with AS to put into our perspective, i will happily oblige to answer them. As you said "it's fascinating to hear about AS from the inside".
Comment by Anonymous
Thanks for your long thoughtful reply. You're right of course - everyone is different with a unique set of skills, talents and problems. My son has perhaps a few symptoms of AS but not enough to be diagnosed - he is extremely empathetic and notices emotions more than other aspects of people - when he first used the toilet properly I hadn't realised how pleased I was but he said 'You're happy mummy!' However he often makes comments that are inappropriate or bizarre - it's hard to know where they come from or how he's thinking.
It's amazing that you have such a long memory - I doubt if my son remembers much from even being 4 (he's 6 now)- at least he has never talked about past memories.
What do you see now as your main goal for the future?
Comment by Aspergers
at both my primary and jnr high school i found that the teachers tried to change who i am and now i feel as if its more down putting to yourself, especially for young kids.
one thing i find particularly hard is not to lie, which means for any parents out there if yours kids lie to you they will suffer from alot of guilt. i will at most times get in trouble from girls who would ask "do i look fat?'. in which i would tell the truth.
as shebooo was saying about her son having different diagnosis' from various people i was told i had in order:
1. shyness
2. ADHD
3. ADD
4. Bipolar
as i said my special interest is in psych, i came across tony attwoods The Complete Guide to Asperger's Syndrome. in which on completion i reading this book i was sure i had it and pursued it until i got my diagnosis.
the problems is that the schools are supposed to have a duty of care over every child in the school and looking after the well-being of the individuals, in which they never do support the kids who like myself have few friends. during year 1-10 i had no friends, for the trouble i was having with the bullying-physical,mental and verbal abuse including broken bones. my school accused me of starting these so i was in trouble.
will finish this later....
Comment by Aspergers
over the years as i said i changed it to an eye twitch, which i do not notice unless someone pointed it out to me. when i was younger i remember flapping my arms only when people would say something about my flappying is what i remember apart from the few videos of my childhood.
due to the tormenting that us AS individuals get we try to life our lives through our imagination. in which for me sometimes due to the bullying i would have a feeling of psychosis (not knowing difference between imagination and real world- dreaming or real?). however in saying this we are quite capable of living our lives in this way. i would say this is something that keeps us innocent at heart, same as the flapping.
majority of people do not live through imagination or when they get excited they don't flap their arms, but the younger you are at heart than the more you use something children use to have a good life. i myself may be 18 but i have a social age of a 13-14yr old, and i find the subtle things in life good. although of the young social age i have an intellectual ability of a 28-30 yr old.
most people could put this down to AS, but personally i believe that it is not AS itself. It is experiences that we have that are so different from the majority that define who we are and how we think in life. as our social lives are not normal to our age we end to find comfort in learning thus whilst we get smarting our social behaviors stay constant or progress at a slower rate, which would explain why i still flap my hands.
sorry to making these posts long, it would be good to hear from you Cinico and to know how jack is handling. we may lack the empathy but we can empathise for those who are the same to us, and anyone else who has questions pls dont hesitate to ask. you may get answer from the carers/parents of the children but why not get one from someone who experiences the impact of it everyday.
Comment by Aspergers
would like to know how yourself and jack are handling and whether or not you are both fine with the prospect of jack having AS? what plans do you have in place for jacks growth & development whilst he would be at school?
Comment by Anonymous
Thanks for writing this.
Comment by Random Swede
Comment by Anonymous
I have never been diagnosed with Asperger's. As a child I began hand flapping around the age of four, usually when I was excited and using my imagination. Through my childhood I picked up that it was an anti-social behaviour through my mother and I learned to hide it outside of my bedroom, because of some teasing and mild bullying at home and school.
As a child, I was mocked by my parents and my brothers and sisters. I turned inward and spent most of my time in my room. Shaming can be a terrible thing. But I could not stop hand flapping. Quite honestly, at some point, I figured out that I hand flapped when I was being creative. I liked to do it! It was part of me, and if truth be told, it is still part of me now, and I am 44 years old.
Please let the parents who read this keep hope. This hand flapping is not a curse, it is truly a gift. The problem is that people do not understand our behaviour. I am a passionate individual. I am happily married, fathered a child, and I have a successful career. My wife says that I have a unique passion for life. Somehow, I believe that passion is linked to my state as a hand flapper. Naturally, I do not hand flap in public. When I get excited over a concept or idea, or something wonderful happens, I fold my arms and scratch my thumb with my forefinger- people think I have an itch!
As for the concept of gift-a little perspective here- I am convinced that our ability to focus on something we love is heightened by the passion/excitement that courses through our veins as hand flappers. Encourage your child to pursue something they really enjoy, like art. In my personal case, I loved to write and study history. This passion drove me forward, and helped me to finish a PhD and teach university. This excitement can be channeled into positive ends! For me, it took a counsellor to get me to see how this "idiosyncracy" was actually a gift. I wish my parents had had this perspective, but it was a different time, and they were not educated. It would have saved me from years of shame and grief.
Take hope parents- this trait could actually turn out to be the greatest gift your child will ever receive- you just won't know it for some years to come. Be encouraging and don't feel guilty if you want to protect them from the world. They will need to learn strategies to channel this in private spheres. This may be anecdotal because I am no psychologist, but I believe that in many ways, this is just their passion coming out- if they can learn to channel it, they may surprise you with what they do in life. Deep down, I think one of the reasons I am as happy as I am, is because I have the passion of a hand flapper! You should all be so envious!
Best wishes to you all!
Comment by Anonymous
Well before you think you child has a problem let me say this, I have had many of the "symptoms" of Apsergers and think it is total HOOPLA!! My wife is worried my daughter is in REAL trouble but guess what? She acts exactly as I did as a child and to a degree as I do now. I like familiar things, tested at genius levels. Prefer logic rather than faith or mystique. Flapped my hand as a child. (Grew out of it) Can remember things most people forget. Keep a small circle of friends that I know, love and trust rather than except everone at face value. I don't think I'm an exception to the rule but rather someone that thinks before I just accept. I have a wonderful life and cherish the relationships that I make by choice. You wonder why healthcare is so expensive? We are constantly being told "something may be wrong" but are never 100%. Chances are your child is smarter than you do to natural evolution. (You are blessed!)
If your child really has an affliction, aquire knowledge by all means. If you are paranoid, STOP! Chances are they will be more successful than you just like you did better than your folks.
By no means am I standing on a soapbox trying disprove current healthcare but for God's sake DO NOT try to strap an affliction to your child because you don't understand his/her developement. Chances are they will succeed more than you did. You will then be sure you did a great job!!