2008 was a pretty defining year for us as the Morley family. Our son Sam, who is now 7, was diagnosed with Aspergers.
Not that getting a label changed anything. Sam was the still the same Sam we had the day before.
Sam is in a word: contagious.
He is often obsessed with one particular genre. At some point he has been obsessed with:
Trains
Lego
Boats
Excavators
Monster Trucks
Transformers
Power Rangers
And as of this week, Tornados
And when I say obsessed, I mean he will work some kind of fact about say, tornadoes in most conversations we have. I say a lot of hmm and yeps. And dear God, if I ever have to watch “There goes a Monster Truck” again, more than likely you’ll find me in bath in the foetal position.
Oh and he hates wearing buttons. HATES. I have tried to pry from him what he thinks the buttons will do to him. Often he says he doesn’t know, but we have learnt enough to know it’s his thing, it’s sensory and to just get over it.
We always knew something was up with Sam. He was in and out of hospital many times before he turned 3, had a hernia operation, had an intussusception (basically, the bowel folds back in on itself) RSV and Severe Influenza A.
He had been checked by doctors, specialists, naturopaths, osteopaths - everyone medical, we saw. No-one could tell us anything other than he lacked iron. No one could tell us why.
In 2007 Sam started Prep in Queensland. After about 4 weeks, the head of the SEU (Special Education Unit) at the school, called me to one side and proceeded to tell me that “he sees kids like Sam every day of the week and I need a diagnosis and blah blah blah”
I couldn’t really comprehend what he was telling me. I mean I knew something was wrong but when he started drawing diagrams and telling me Bill Gates has aspergers and some of the most successful people in the world have learning difficulties, I just couldn’t, or didn’t want to believe it.
First and foremost I and my husband had to get over ourselves.
See I think without meaning to, we take any criticisms or problems with our children as our own failings.
I had googled Autism and Aspergers. Usually I would read up to about 5 symptoms or characteristics of an aspergers child, realise Sam was hitting every mark and flick to something more cheery. Like EBay.
Deluded - yes. Poorly dressed – No.
So although we had a hard time getting our paediatrician to give him “a label” we got one and it also meant Sam could get extra one on one help in his classroom.
My worry for Sam is his future. Although we have not been given a death sentence for Sam, we have been given a wakeup call.
Will Sam finish High School? Will he have a girlfriend? Will he have the skills to get a job? Will he live independently?
With most kids, although we never know when, the above is a given. With Sam, my heart breaks to think he may miss out of some of life’s simple pleasures.
Sam is a beautiful hearted child who unfortunately has the habit of dobbing on the naughty kids. This backfires in two ways; the teacher gets sick and tired of “Missssss” and it also makes him a target.
His school has a shall we say, rougher element to it. He has come home to tell me he got “punched in the back of the face” (Back of the head I’m guessing). My husband’s solution to this is to “hit them back”. I try to tell him to tell the teacher and tell the boy to “stop I don’t like it”. My husband is pretty sure the kid will have knocked his teeth down his throat by the time he gets to “like it”. Yep Sam, hit the little shits back.
At the end of the day we are lucky to have Sam and all three of our kids. I have made some great friends I more than likely would never have met and I think it's made me a lot less ignorant to the world of disabilities, be they obvious or hidden.
This brings me to Scruffy Allan. Years ago, when we couldn’t get a dog, but Sam desperately wanted one, I got a big flip up clothes hamper in the shape of a dog to hold his dress-ups. I asked him if wanted to name it. Without missing a beat, he said - Scruffy Allan.
Of course, why didn’t I think of that?
Not that getting a label changed anything. Sam was the still the same Sam we had the day before.
Sam is in a word: contagious.
He is often obsessed with one particular genre. At some point he has been obsessed with:
Trains
Lego
Boats
Excavators
Monster Trucks
Transformers
Power Rangers
And as of this week, Tornados
And when I say obsessed, I mean he will work some kind of fact about say, tornadoes in most conversations we have. I say a lot of hmm and yeps. And dear God, if I ever have to watch “There goes a Monster Truck” again, more than likely you’ll find me in bath in the foetal position.
Oh and he hates wearing buttons. HATES. I have tried to pry from him what he thinks the buttons will do to him. Often he says he doesn’t know, but we have learnt enough to know it’s his thing, it’s sensory and to just get over it.
We always knew something was up with Sam. He was in and out of hospital many times before he turned 3, had a hernia operation, had an intussusception (basically, the bowel folds back in on itself) RSV and Severe Influenza A.
He had been checked by doctors, specialists, naturopaths, osteopaths - everyone medical, we saw. No-one could tell us anything other than he lacked iron. No one could tell us why.
In 2007 Sam started Prep in Queensland. After about 4 weeks, the head of the SEU (Special Education Unit) at the school, called me to one side and proceeded to tell me that “he sees kids like Sam every day of the week and I need a diagnosis and blah blah blah”
I couldn’t really comprehend what he was telling me. I mean I knew something was wrong but when he started drawing diagrams and telling me Bill Gates has aspergers and some of the most successful people in the world have learning difficulties, I just couldn’t, or didn’t want to believe it.
First and foremost I and my husband had to get over ourselves.
See I think without meaning to, we take any criticisms or problems with our children as our own failings.
I had googled Autism and Aspergers. Usually I would read up to about 5 symptoms or characteristics of an aspergers child, realise Sam was hitting every mark and flick to something more cheery. Like EBay.
Deluded - yes. Poorly dressed – No.
So although we had a hard time getting our paediatrician to give him “a label” we got one and it also meant Sam could get extra one on one help in his classroom.
My worry for Sam is his future. Although we have not been given a death sentence for Sam, we have been given a wakeup call.
Will Sam finish High School? Will he have a girlfriend? Will he have the skills to get a job? Will he live independently?
With most kids, although we never know when, the above is a given. With Sam, my heart breaks to think he may miss out of some of life’s simple pleasures.
Sam is a beautiful hearted child who unfortunately has the habit of dobbing on the naughty kids. This backfires in two ways; the teacher gets sick and tired of “Missssss” and it also makes him a target.
His school has a shall we say, rougher element to it. He has come home to tell me he got “punched in the back of the face” (Back of the head I’m guessing). My husband’s solution to this is to “hit them back”. I try to tell him to tell the teacher and tell the boy to “stop I don’t like it”. My husband is pretty sure the kid will have knocked his teeth down his throat by the time he gets to “like it”. Yep Sam, hit the little shits back.
At the end of the day we are lucky to have Sam and all three of our kids. I have made some great friends I more than likely would never have met and I think it's made me a lot less ignorant to the world of disabilities, be they obvious or hidden.
This brings me to Scruffy Allan. Years ago, when we couldn’t get a dog, but Sam desperately wanted one, I got a big flip up clothes hamper in the shape of a dog to hold his dress-ups. I asked him if wanted to name it. Without missing a beat, he said - Scruffy Allan.
Of course, why didn’t I think of that?
15 comments:
Wow... When I was a journalist I wrote a lot of stories about parents with autism. Their resilience - YOUR resilience - is awe-inspiring.
*parents of CHILDREN with autism. Although parents with autism would be pretty remarkable too, I'm guessing.
Ahhh, superbly written Bern. I feel for you on this one. But if it helps, and I'm sure you've heard this a lot before, I had a friend in high school who was aspergers. Sure, he lacked some of the finer social skills we take for granted, but don't we all sometimes? He was a smart, gifted guy who now has a girlfriend and is studying at university.
And Sam is adorable, holy cow!
Aww thanks guys. Yep, look I LOVE spending time with Sam. He has so many stories to tell (most of them untrue) and is generally fun to be around. He had the teacher last year convinced we went on a train to Taringa every single weekend to go visit his grandfather.
I'm also aware taht, the biggest "successes" in life can turn out to have all sorts of problems/addictions/bad luck. I just hope we are doing all we can to lead him in the right direction for him. ;)
Wow, what a lucky boy to have a mum like you. Thank you for sharing such a beautiful post about your very special boy.
Read "Look Me In The Eye" by John Elder Robison. Read it NOW. He is the brother of Augusten Burroughs (of "Running With Scissors" fame). He has Asbergers & is living a fulfilled life with a career he loves & a wife & child. He will give you inspiration & hope.
Also read anything by Tony Atwood - he is the Aspergers GURU & writes material that is invaluable for parents of kids with Autism Spectrum Disorders.
Your son sounds divine. With a mum like you, and his siblings, and his dad, he's going to have a beautiful life.
Thanks for the lovely comments.
And Kerri, how bizzare is this? We moved to a new house in 2007 and our neighbour worked at Hearts and Minds - Tony Atwoods clinic. She has been fantastic in helping me but more giving me piece of mind and letting me ask any questions I have or had.
Anyway, as I type this, he is having a fight with his 2year old over his toys (complete with "I know you, you said you are" so most things stay the same :)
It must be a huge learning curve once your child get's 'labled' but the good thing is, like you said, help is much easier to get if your child fits into a specific category.
My aunt had a major battle with the schools for her child. Nobody would diagnose him and it wasn't until he was around 14 that they finally diagnosed him with severe Aspergers. It was heartbreaking to watch her know that her child was different and needed help but was unable to access any support.
Anyway, after a huge struggle with school and care support, her son has now been living on his own for the past 5 years, has held down a job, comes to family gatherings clean and nicely dressed and is actually quite sociable if he is comfortable with the company and conversations. This is more than she could ever have hoped.
I love hearing the positive stories. It means a lot. Thanks for sharing X
You rock, Bern...one of my best friends from uni has a daughter with autism and I am in awe of her ability to cope. It's wonderful to witness your positive attitude (and see your gorgeous boy's face!)
Bern, I only just found this after reading about pricks etc... I have to tell you something and I don't often put this out there cause I hate the label. But I have a son with Aspergers...and I also have Aspergers. So when you look at your son and wonder what his future holds, let me assure you - it holds whatever he wants it to and I know you will be awesome enough to help him achieve his goals.
Bern - I just found this post after twitter stalking you ;-) - not really just following back - your questions for your son are the ones I ask myself every single day of my life.
Will he finish High School? Will he have a girlfriend? Will he have the skills to get a job? Will he live independently?
My son is nearly seven and was assessed last year as having many characteristics of high functioning Aspergers but because he was a bit young they couldn't put the full label on - which I am not so upset about. We have recently moved countries from HK to South Africa and that was quite a traumatic event for him - the toughest part is re-educating the schools and OTs to what he was doing previously but we are nearly back on track. Thanks so much for this post it reflects my thoughts and feelings so exactly.
Nikki, thanks so much for the comment. I can only imagine how much of a change that must have been and expressing to the new therapists his needs. I'm so glad this is something you could read and maybe even compare. Please ask me questions and if you don't mind, I'll ask you some? thanks Bern
Bern - yes would love a info swap should any questions come up. We are currently struggling through is Omega 3 enough?? - and should we move to harder core drugs for school as it gets more complex. For now we are going with additional teaching assistant for 2 hours a day at our expense (drugs would probably be cheaper and paid for by health insurance ;-) and we'll see how he goes.
Trawling back through your old post Bern and this one is close to home. I have a nephew who is Aspergers and a brother who is also. To give you a little peace of mind my nephew has just finished year 12, it wasn't easy for him due to bullying and his parents had to swap schools several times until they found a high school that were prepared to help him stay safe but he did it and he passed well. He's now pursuing a career in animation. My brother - he's a Professor of Psychology and teaches at a university. Sam will do well as long as he has teachers who help him work within his frames of reference and his school helps to keep the bullies at bay.
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