November 1, 2010

A Life Apart

Today is Twitter Shutdown day, to raise awareness for autism. I'm not convinced that shutting down Twitter or Facebook will contribute in any meaningful way to the quality of life of people with autism. Personally, I would like to take advantage of the day to increase understanding, and to raise funds.
Here is an edited version of an article I wrote five years ago:


May 2001 was a big month for Nikki and me. We'd been close friends since our first kids were born a few weeks apart, and we gave birth to our second babies within days of each other.

We met for coffees, took the toddlers to the park while the babies slept in their prams, and grumbled about all the challenges of managing two young children. But over the coming months, as my daughter began sleeping through the night and my life started to get easier, Nikki's world began to fall apart.

Something wasn't right with her new son.

"Jamie's not holding things in two hands," she told me one day, when both the babies were about 10 months old. "I'm worried."

Though I didn't tell her, I was worried too. Jamie didn't seem to be communicating or interacting the way that other children were. His developmental lag became more and more noticeable, and by the time he was one, several specialists had suggested that he was profoundly deaf.

It was a distressing possibility. Strangely, however, when he was formally assessed by the Deafness Centre, the report came back clear. His hearing was perfect.

"Great!" all of our friends exclaimed. "What a relief!"

But Nikki wasn't relieved, and I knew why. If Jamie wasn't deaf, then something else had to be wrong.

It took another year - a year of tremendous anxiety and innumerable assessments - before Nikki and her husband Andrew found out exactly what that 'something' was.

Jamie has autism.

Autism is one of the autistic spectrum disorders, which includes Asperger's syndrome, and is a lifelong disability. People with autism process information differently to 'normal' people, and, as a consequence, have severe difficulties communicating and relating to other people, and to the world around them.
The incidence of autistic spectrum disorders is rising, up to around 65 per 10,000 of the population, and though there is thought to be a genetic component, it is impossible to predict.

Children with autism are often initially assumed to be deaf, because they cannot make sense of speech sounds and facial expressions. They are also unusual in their social interactions, relating to other people in the same manner as they would relate to an object. One mother I spoke to described her child running straight over people who were lying on the beach, instead of walking around them as other kids would do.

In addition to being greatly impaired in speech and comprehension, most people with autism also have a moderate to severe intellectual disability, and have unusual, often intense, responses to sensory stimuli such as taste and touch.

Jamie's diagnosis of autism was shattering news for Nikki and Andrew.

"It was like someone had whacked me over the head with a shovel," says Andrew, a gentle, softly-spoken man. "I drove back to work in absolute tears. This is not supposed to happen to us. This is not our perfect life."

It has been a difficult road. Two years on, Jamie, like my own daughter, is about to turn four. But while my daughter is choosing her own clothes, drawing pictures of her family, and talking incessantly about preschool, Jamie is locked inside his own world.

Jamie has no speech, and very limited non-verbal communication. He has never held a texta, never dressed himself, never taken himself to the toilet. He is a strong boy whose high levels of energy and frustration make every outing, every activity, a huge challenge. He is almost constantly on the move, running, grabbing things, and banging his head against walls. He rarely sleeps through the night, which has left Nikki and Andrew permanently sleep deprived for almost four years.

Children with autism typically perform unusual, repetitive, and even dangerous behaviours, and Jamie is no exception. His obsession is with spinning wheels, and he has made things spin that were previously considered aerodynanically impossible.

Still, despite the immeasurable difficulties, Jamie is a gorgeous little boy who is adored by his parents and extended family. As Andrew says, "He's an absolutely beautiful, happy kid with a big smile and a big laugh. And the look on his face when he sees you... it's beautiful."

Nikki has a wide social circle, but having a child with autism is extremely isolating. Just co-ordinating her son's program of early intervention, including mornings at a special school and afternoons with various therapists, is all-encompassing. Outings as a family are near impossible, as Jamie is extremely dificult to control when he's out of home. And as for quality time as a coule, well, when I raise that question Nikki just snorts, so I assume there's not a lot of it.

The greatest concern for Nikki and Andrew, however, is their son's future. They wonder how far he will develop, and whether he will ever learn to communicate through speech. Most worrying of all, they wonder where he will live when they can no longer look after him at home.

"The worst thing for me," says Nikki, "is that I can't just live in today. I am always projecting into the future, hypothesising about what's ahead."

For anyone, having a baby means taking a plunge into the great unknown. However, having a child with a disability launches the parent on a very different path, with a lifetime of challenges and responsibilities the rest of us can try to appreciate, but will never fully understand.

Nikki and I got pregnant at the same time; my child turned out to be 'normal', and Nikki's child turned out to have autims.

It is clear to me that Nikki, Andrew and every other parent in our community with a disabled child deserve our wholehearted support - emotionally, practically, and, when necessary, financially.

Because if it weren't for some stroke of luck, this story could have been about my child. Or yours.

To donate to Jamie's brilliant school, Giant Steps, click here.

25 comments:

  1. I also did a blog about Communcation Shutdown today.

    Thank you for sharing your blog & thoughts.

    I'm hoping that some one with Autism or has Autism will also share their stories.

    (((( Hugs ))))

    ReplyDelete
  2. I cannot fathom the struggle these families go through, or the challenges.

    Like you, I'm not sure the symbolism of a communications shutdown is all that effective. Not to cast doubt on those doing it; I just work slightly differently.

    A great book about a child with autism - The Curious Case of the Dog in the Night Time - was exceedingly illuminating about just a fraction of how their wonderful minds work.

    Nikki sounds like a trooper :)

    ReplyDelete
  3. I lost my mother last week so everything is enclosed in a shroud of grief and I did not know of the twitter shutdown.

    My son has Asperger Syndrome. I think the thing I found hard with your post is the broad generalisation of the Autism Spectrum as being like your friend's son. It is not. It is a spectrum. I would normally post a big blurb with our story but cannot think enough to even post a snippet. Please, realise that it is named a spectrum for a reason and telling everyone "this is the face of autism" is just not so. The faces are many and for us we treat ASD as differing abilities, not a disability. Each and every child with ASd has their own story as does every child on this planet.

    Apologies if this is not clear. My family has lost our pillar of strength and we are wobbling a bit right now.

    ReplyDelete
  4. Madmother,
    Firstly, I am so very, very sorry for your loss. I wish you and your family long life (as is the Jewish custom).
    Please don't take offence - I wasn't in the slightest putting Jamie forward as the 'face of autism' - he is just one case, the son of a dear friend, and I chose to write about him.
    I know people with Aspergers syndrome and obviously they are very, very different and their challenges are different. For anyone reading this post who wants a brilliant insight, I found 'Look Me In The Eye' by John Robison to be incredibly illuminating and a great read.
    All the best,
    Kerri

    ReplyDelete
  5. Thanks for your post Kerri, I truly believe that education and shared experience will do more for Autism than a communication shutdown. I hope more people post their thoughts and experiences to spread the word, and thanks for placing a link to where I can donate, will be doing so now.

    ReplyDelete
  6. Madmother, The shut down for Autism is to cover all ASD.
    I am so sorry for your loss, I can't imagine how you must be thinking, so I will say, I am thinking of you during this sad time.


    My brother has Aspergers.
    It took a very long time for a diagnosis. A lot of scary words were being mentioned. Autism, High Functioning Autism or Aspergers is something that you don't want to think of.

    I remember it being a very difficult time for us as we struggled to deal with the idea of autism touching someone in our family.

    He's 17 now, about to turn 18 and along with his Aspergers, he is also depressed and self harming. This is quite common for adolescents with Aspergers however it feels at the moment like we are drowning.

    Aly (my brother) is highly intelligent but behind his peers in communication and social skills. He sits too close to people, doesn't understand personal space, says inappropriate things, he's obsessed with classic rock and will reel off obscure facts about Deep Purple to anyone that will listen. He loves music and sings in public. Badly. Loudly.
    People stare (especially when he sings) he was bullied at school and he finds it hard to find friends.
    But he is kind and considerate.
    He tells me he loves me everyday.
    He still calls our mum Mummy and remembers everyones birthday he's ever met.
    He's my brother.
    He can be annoying.
    He complains about doing the dishes after dinner and he wears his trousers too low.
    but he's my brother and despite having his disability, he is the best brother anyone could ever ask for.

    So, last night as I was talking to him about the communication shut down I was surprised when he told me that he didn't like the idea.
    He asked me what the point was in it?
    I suggested that restricting communication would make people aware how difficult it is for people in the Autistic community.
    He said "whatevs sassilberry"
    My brother then went on to say that it's important for people to know about autism and all autistic spectrum disabilities and how will they know anything if they turn everything off for a day.

    Simply shutting off your social networking accounts for a day isn't going to raise anymore awareness for Autism at all.
    Those that have shut down for Autism will go on with their days, they will have conversations with people, they'll go to work, probably do more work than normal, they will have their lunch breaks, pick their kids up from school, go home and make the dinner, they might read a book or watch some television or spend time with their family.
    That's not raising awareness. That's carrying on with your life minus social media for a day.

    Come tomorrow everyone will jump back on and say how nice the break away from Facebook/twitter and how much stuff they got done.
    So where is all the awareness for autism?

    Surely using social media for one day promoting Autism would raise more awareness?

    Today, my brother is on his facebook page, spamming up everyones feeds with his usual chatter. My family are not shutting down for autism, we are keeping the lines of communication open.

    Sass
    :)

    ReplyDelete
  7. Thank you for this. Mr 9 in on the spectrum. He has Aspergers Syndrome, also PDD, and ADD. He is wonderful, and funny, and smart. But he is Hard Work. We are lucky as he is high-functioning, but he has his challenges. Some teachers wrote him off, but we've since found a good school where there is support for C. Still, he stands out. He is constantly moving and fidgeting, he has a tic, he talks really fast, he can't stop doing anything until it is finished, he calls out in class, interrupts, walks over people and things. He is always getting hurt because he is clumsy. He is quick to anger. He has anxiety and depression. He sometimes sits in a box to calm himself. My ex-hubby and I fought constantly over C, because he felt C. could control his behaviour, and I felt he couldn't. We have since had the diagnosis which has helped a lot, but it was too late to save our marriage. C. also couldn't sleep - he could stay awake for hours and then get up at the crack of dawn, also had nightmares and night terrors, sleep talking and walking. Melatonin (compounded) has made a huge difference with this.
    I could go on forever, but I just wanted to say thanks Kerri, I struggled with the whole shut down idea, and I couldn't support it. I feel it's more important to raise awareness by spreading it than shutting down. Also, these kids (and adults) who get shut out of so much already; it just seems wrong. I also know that many autistic people are better able to communicate by computer, my son included. He can write stories and do spellings correctly on the computer, but not if he has to handwrite it. So why shutdown a way that many ASD people find eases communication?
    Rave over, I'll go now. Just wanted to say you have written what I wanted to say. xo

    ReplyDelete
  8. Madmother - hugs. I'm so sorry about the loss of your mum.

    Sass - my 7 yo Aspie has been self harming and talking about killing herself. She is only 7yo, it is terrifying. Thank god for good counsellors who know their stuff and can help.

    Kerri, thank you for this post, every voice raised, every story told, it all helps to raise awareness.

    ReplyDelete
  9. Marita, that is so very young to be depressed and self harming.

    It's so distressing, my brothers doctors are very frustrating, how can you say to not make a big deal out of it and that "generally speaking, the wounds are superficial"
    So very frustrating and I'm sure if it were their child they would be worried too.

    We are currently trying "safe harm" with him, so flicking rubber bands on his wrists and holding ice cubes in his hands. After a recent suicide attempt we are trying anything.

    again Kerri, brilliant post.

    ReplyDelete
  10. This is such an important post Kerri, and a great discussion within the comments. I haven't been able to articulate my thoughts on the whole shutdown thing, but I tend to agree with you and SassBee's brother - shouldn't we be openly discussing it, talking about it more? Autism in its many forms and across the whole spectrum seems to be affecting more and more Australian families. Let's bring it right out into the open.

    ReplyDelete
  11. Sass and Bronnie,
    Thank you so much for sharing your stories. I am so moved, and feel grateful for the insights you've offered.
    Life must be so challenging for you and for the people with autism you love. I hope lots of people read your comments.
    K xxxxx

    ReplyDelete
  12. Very valuable post Kerri and like you I can't understand how 'shutting down' on FB or Twitter can help with raising awareness - surely communication is better at doing that.

    ReplyDelete
  13. Kerri, the inability to communicate is a tragedy for anyone, not just kids. Another compassionate post from a remarkable woman. Thanks, as always. xxx

    ReplyDelete
  14. Great article Kerri!
    I have had the joy of getting to know a young boy who has autism and his wonderful family through my last job. My boyfriend's brother also has Asperger's and is deaf. The mothers and families of these people are strong, resourceful, and often have such a wonderful outlook on life. They take far less for granted than others, having a 'good day' is the best thing imaginable!
    More needs to be done to highlight this disorder as it is so often misunderstood.
    I recommend people read 'a friend like henry', its a heart-warming eye-opener.

    ReplyDelete
  15. How effective will it be? Well we are all talking about it...

    ReplyDelete
  16. I'm with Vicky on this - we're talking about it so it's good in that sense surely so long as people actually DO talk about it when they log back in.

    I know very little at all about the Autism spectrum and can't imagine how difficult it is to raise multiple children when one so very clearly requires more patience and attention.

    Thank you to those of you who shared your personal stories earlier in the comments. I admire you greatly.

    Kerri, how is your friend doing now as you mention this article is a few years old now?

    ReplyDelete
  17. Hey Cat,
    You and Vicky have a very good point, of course. I just hope people do talk / think about autism today and when they log back in.
    As for Jamie... it's really hard. He is 9 now and a big boy. He still doesn't speak and he still doesn't sleep. His parents have had some success using picture cards to communicate with him, which is a great breakthrough. There are certain children's videos that calm him but he is often very agitated. His challenges have impacted significantly on his older sister. He attends Giant Steps, which is an outstanding school. His parents spend a great deal of time and effort fundraising for GS, as it does not charge fees, but requires funding.
    What will happen to Jamie after schooling is still a great worry.

    ReplyDelete
  18. I met a woman on the Gold Coast when I was there recently who has 4 kids, works full-time and her husband is away during the week for work. Her eldest child - her son - was diagnosed with ADHD not that long ago, and she said it was very hard work at times as he really annoyed his sisters, and she found it challenging to juggle it all. It took SIX YEARS for Drs to give them the right diagnosis for him. The drugs he is currently on aren't really working either, so they are back to the drawing board....

    What I really feel for parents who are going through this or similar, is that many other parents will dismiss their child as 'naughty' or 'difficult' - not knowing about their diagnosis. Parenting is challenging enough for parents who have kids without ADHD or similar, so one can only imagine how much harder it is for parents with children with autism, ADHD etc.

    Awareness and information is the key. I don't think the Twitter/Facebook is a bad thing, but I'm not sure it's the answer either. Having said that, it has obviously started a discussion, and that's a good thing.

    I wish Jamie, and his family, much love and support around them.

    ReplyDelete
  19. Another amazing post, Kerri, thank you. As I have no personal experience of autism, it really gave me an insight into how families are effected.

    Having read through the comments, I now understand where people are coming from in questioning whether the shutdown will have an impact.

    I have participated in the shutdown, and while far from providing a solution, I really hope it does some impact.

    Social media is a gathering place for millions of people, and for the percentage that have participated in the shutdown, the issue of autism is front-of-mind. And most importantly, if people have participated fully, they have donated money to the cause which will hopefully have some impact.

    I know I may be naive, but I'm sincerely hoping that by raising awareness and putting the topic of autism in the social sphere, the shutdown can direct some focus to this important issue. And then, when people log back on tomorrow, I hope they will read blogs like yours, gain a greater understanding and discuss the issue further.

    Of course it won't be the solution to beat all solutions, but like Red Nose Day for SIDS, or Pink Ribbon Day for Breast Cancer, hopefully this will work towards raising awareness and funding for autism and for families who experience it every day.

    I really hope it does have some impact.

    ReplyDelete
  20. I speak as if I have been to the world of autistic kids & their parents & have come back to what we sadly term "Normal"

    My wife & I have gone through an intense 2.5 years of trying to help our toddler (who has recently turned 4) with his obvious difficulties, from his speech to fine & gross motor skills delays. Intense speech therapy, a an lternative medicines leaning autism specialist paediatrician, Occupation therapy,hearing tests + my wife being a Special eductaion primary school teacher herself etc etc (you name it we have tried it)seem to have paid off & (fingers crossed) brought us back to the world of everyday parenthood as we are now almost certain our beautiful son suffers from sensory issues which with intense coaching can be fullt rectified.
    But life has been intense in the past two years & as a man & a father I have learned so much about the pain & suffering of parents & their unquestionable love for their autistic children. Because there have been many worrying sleepless nights with thoughts of autism crossing our minds......
    All in all my hats off to all parents with autistic kids. They are just as beautiful as their kids & deserve all the help they can get.

    Thank you Giants Steps for the great work you do (please support them) & Thank you Kerri for once again writing so beautifully & highlighting social issues so brilliantly.

    ReplyDelete
  21. thanks Kerri, this has been on my mind all day. I somewhat reluctantly participated in the 'shutdown' today, despite also sharing reservations about the meaning and appropriateness of the method. Ultimately, however, my view was that this was a fundraising campaign, and as you accurately outlined in your piece, families and schools supporting children with autism need all the $$ they can get. so i hopped onboard.
    In the past few days i have followed the for/against debate on this issue, and discovered a number of those i communicate with via twitter/FB have had their lives toucherd by autism. A fact i may never have uncovered without this camapign. My sister has two children on the autism spectrum, and not a day goes by that i don't fear for their future and worry about how/if my sister and her husband are coping.
    In my mind, the shutdown does nothing terribly 'meaningful' for those diagnosed with a spectrum disorder, apart from raise $$. But perahps its redeeming outcome is that it has encouraged a dialogue on this topic amongst affected family and friends. If this sharing of stories and outpouring of support offers even the slightest bit of comfort to my sister and the millions out there like her, then it's ok by me

    ReplyDelete
  22. I speak as if I have been to the world of autistic kids & their parents & have come back to what we sadly term "Normal"

    My wife & I have gone through an intense 2.5 years of trying to help our toddler (who has recently turned 4) with his obvious difficulties, from his speech to fine & gross motor skills delays. Intense speech therapy, a an lternative medicines leaning autism specialist paediatrician, Occupation therapy,hearing tests + my wife being a Special eductaion primary school teacher herself etc etc (you name it we have tried it)seem to have paid off & (fingers crossed) brought us back to the world of everyday parenthood as we are now almost certain our beautiful son suffers from sensory issues which with intense coaching can be fullt rectified.
    But life has been intense in the past two years & as a man & a father I have learned so much about the pain & suffering of parents & their unquestionable love for their autistic children. Because there have been many worrying sleepless nights with thoughts of autism crossing our minds......
    All in all my hats off to all parents with autistic kids. They are just as beautiful as their kids & deserve all the help they can get.

    Thank you Giants Steps for the great work you do (please support them) & Thank you Kerri for once again writing so beautifully & highlighting social issues so brilliantly.

    ReplyDelete
  23. Another amazing post, Kerri, thank you. As I have no personal experience of autism, it really gave me an insight into how families are effected.

    Having read through the comments, I now understand where people are coming from in questioning whether the shutdown will have an impact.

    I have participated in the shutdown, and while far from providing a solution, I really hope it does some impact.

    Social media is a gathering place for millions of people, and for the percentage that have participated in the shutdown, the issue of autism is front-of-mind. And most importantly, if people have participated fully, they have donated money to the cause which will hopefully have some impact.

    I know I may be naive, but I'm sincerely hoping that by raising awareness and putting the topic of autism in the social sphere, the shutdown can direct some focus to this important issue. And then, when people log back on tomorrow, I hope they will read blogs like yours, gain a greater understanding and discuss the issue further.

    Of course it won't be the solution to beat all solutions, but like Red Nose Day for SIDS, or Pink Ribbon Day for Breast Cancer, hopefully this will work towards raising awareness and funding for autism and for families who experience it every day.

    I really hope it does have some impact.

    ReplyDelete
  24. I met a woman on the Gold Coast when I was there recently who has 4 kids, works full-time and her husband is away during the week for work. Her eldest child - her son - was diagnosed with ADHD not that long ago, and she said it was very hard work at times as he really annoyed his sisters, and she found it challenging to juggle it all. It took SIX YEARS for Drs to give them the right diagnosis for him. The drugs he is currently on aren't really working either, so they are back to the drawing board....

    What I really feel for parents who are going through this or similar, is that many other parents will dismiss their child as 'naughty' or 'difficult' - not knowing about their diagnosis. Parenting is challenging enough for parents who have kids without ADHD or similar, so one can only imagine how much harder it is for parents with children with autism, ADHD etc.

    Awareness and information is the key. I don't think the Twitter/Facebook is a bad thing, but I'm not sure it's the answer either. Having said that, it has obviously started a discussion, and that's a good thing.

    I wish Jamie, and his family, much love and support around them.

    ReplyDelete
  25. I cannot fathom the struggle these families go through, or the challenges.

    Like you, I'm not sure the symbolism of a communications shutdown is all that effective. Not to cast doubt on those doing it; I just work slightly differently.

    A great book about a child with autism - The Curious Case of the Dog in the Night Time - was exceedingly illuminating about just a fraction of how their wonderful minds work.

    Nikki sounds like a trooper :)

    ReplyDelete

Thanks! Love hearing from you.

Like it? Share it!