April = Autism Acceptance

It’s that time of the year again. Time to break out all those posts I’ve been working on in my head and actually write them down to share the with you. For the last few years I’ve done what I call my Autism Blogathon – a blog a day for the month. Brace yourselves for the onslaught!

Day One

It’s Tuesday. That means we’ve been up busting a move to get fed, dressed and out the door. I scoot through the morning traffic like a rally driver to arrive on time at L’s speech therapy appointment. Just made it today. I just make it every week.

Speech therapy has been a part of our weekly schedule for many years now. It’s also part of our daily lives as most of the therapy is done at home. Our lovely speechie Judith sets the tasks that we work on throughout the week. Over the years I think I may now have done almost as much study as her! I’ve done courses, learnt Makaton (a sign language), I’ve read and practised. I’ve repeated and slowed my speaking style. I know what a preposition is. I’ve perfected simple instructions. I’ve left space for processing and response. Years and years of it. Thousands and thousands of dollars.

It’s paying off.

It’s so exciting to hear the new sentences, the questions and the answers. L is following directions (miracle!! right there!!!). I can negotiate with him. I can help to calm him with words. He can wait, knowing what is coming next. We no longer live in the world where it’s instant gratification or the sky is falling. It’s a wonderful thing.

I was never certain that my boy would learn to talk or choose to use the spoken word as his form of communication. He is learning and he does choose. Every day.

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Hip Hip Hooray

A quick update. It is 15 degrees (59f) has been raining for 2 days solid and tonight we are driving off to spend a few days at the beach as a part of our mid-year school holidays. I actually love doing off season activities, so we’ll wear our rain jackets and enjoy the empty beach. Being an optimist, I’m sure we’ll also get some beautiful clear crisp days as well. Fingers crossed.

It’s been busy on the home front. Baby J is now one year old! Not only that, but last night he took his first wobbly, unaided steps and today he is walking across the room. Go baby go!

N has been talking non-stop – and I mean non-stop for a while now and, typically for a 2yo is giving some royal command performances with his impressive tantrums. Favourite topic of conversation? Trevor’s motorbike. Trevor is my neighbour and his ears must burn with the number of times his name is mentioned in a day.

L is as challenging as ever and I am hoping that the disruption to his routine that the school holidays bring will not make things even worse. I start each day hoping that I have the patience and reserves I need to get through it. I’m constantly seeking out new, engaging activities for him and that certainly helps.

What is not helping is my godforsaken back – oh no! Oh yes! Actually, it’s not my back. It’s more my hip. And now I officially sound like a really old lady, uh oh, I feel like one too! My sacro iliac joint (where the back and the hip connect) is very unhappy with me. Having my spine fused has meant that this joint has had to take some punishment. I need to rest it as much as possible, but with three little boys? It’s not happening folks. So, I’m strapped up, I’m medicated, I’m desperately trying to avoid the next earth shatteringly, excruciating jab. Sadly, this will take some time to heal and I’m already a month into this new world of pain. Enough whinging.

You will hear from a happier me after I return from our mini-break.

Similar But Different

Day 29: Autism Awareness Blogathon (the penultimate post)

We had a lovely morning in the park today. It was the annual AEIOU fundraiser Paddle For Kids. Even though L no longer attends AEIOU, they still consider us a part of the family.

We needed to get out, after a Saturday of very rainy weather and having to stay indoors, the kids were restless and itching to get outside. It was still quite damp and muddy out and no guarantee it wouldn’t rain on us, but we headed out regardless.

The Paddle for Kids involves some racing on the river by sponsored teams from all the different early intervention centres in the Brisbane region. Our team put on a great show dressing up and ultimately coming last in the final.

The boys had a great time – jumping castle, sausages, cupcakes, running around in the mud and lots of friends who were so happy to see us – especially L’s teachers, learning facilitators and therapists. It was lovely to see and catch up with some of the other families.  The fresh air and running around did us all good.

I had my hands full and despite pulling the camera out several times to get some photos, I didn’t get a single one – hopeless! I will update this post with some photos once they come through from other sources.

While I was standing around the jumping castle waiting for the kids an older woman came up beside me and asked if I had a child with autism. ‘Yes, I do, he’s in there having fun jumping around.’ The woman turned to her left and introduced me to her daughter. I turned around to say hello properly. The woman told me that her daughter also had autism and was now 42 years old.

We had a lovely chat about names and about music as she has a special interest in musicals & films. She was able to reel off a few musicals and films that had characters with my name. Her mother said ‘It doesn’t get easier’. I laughed and said ‘Don’t tell me that!’ I really felt for her though. She had raised her daughter in the years when there were very limited services for the autism community – certainly no fun days in the park where we can gather and celebrate our kids.

A lifetime of togetherness. It’s hard to really imagine. You just have to live it to know it. Then tonight I got a message from another autism mum. Her son is in his 20’s and she has told me many times ‘It gets better’. I chose to believe my friend, but in no way dismiss the woman’s statement this morning. My friend and her son are about to head off on an international holiday – what an adventure!

We are generations of mothers, dealing with similar but different issues, joys and challenges.

Disclaimer – I have no alliance with The Autism File and I’m not really sure what ‘we will win’, also not really a big fan of big soppy anthems, but it fit, so here it is.  

100 Things

Day 28: Autism Awareness Blogathon

The book title is ‘The Experts’ Guide to 100 Things Everyone Should Know How To Do’, the author Samantha Ettus. I’d picked this title up at a bookshop years ago and I thoroughly enjoyed reading through it at the time.

Since then, I’ve often thought of these snippets of expert wisdom as I’ve gone about my daily duties. On occasion I’ve had a jolly good reason to pull this book off the shelf and use it as a reference point – mostly in the cause of making the perfect choc chip cookie.

I came across it again recently and was inspired to have another look through it. Things have changed since I first read it, I’m pretty sure I’d be looking at this info with a slightly different filter, in particular that of a mother of a child with autism. I wondered if these 100 things EVERYONE should know how to do would apply across the board? Could this be the guide to my child’s adult life I’ve been looking for?

Let’s see…

  1. Sleep. Oh yes, yes please! Can we ALL learn how to sleep, tonight if possible. Even better would be to learn how to sleep in, but I will settle for plain old sleep.
  2. Make A Bed. Fair enough, it’s one of those self-care skills.
  3. Do Push Ups & Sit Ups. I never learned this and I wish I had. Keeping your body in good working order has got to be something to aim for.
  4. Jog. Forget it, say no more (sorry runners)
  5. Eat Right. Yes, totally on board with this and feeling like we are on the right path. As an independent skill – this one is a high priority.
  6. Make Eggs. Yeah…it’s a good staple, a source of protein. Everyone should be able to cook eggs.
  7. Brew Coffee. It would depend on whether you are a coffee drinker, but I have a feeling my boy will be. He is mesmerised by the smell of coffee and will drink the dregs of the french press if I accidentally leave it within reach. So yes, a good skill to have even if you are only making it for guests.
  8. Read A Newspaper. Well those days are going, going gone baby. It’s all online. Mind you, my boy really enjoys sitting down with the local paper, languidly turning pages in between sips of hot tea. Not reading mind you, but enjoying the activity none the less.
  9. Wash Your Hair. Definitely, half way there already.
  10. Care For Your Skin. An important thing here in the sub-tropics where skin cancer is a real threat, so yes, yes yes.
  11. Shave. Well, he might end up with a beard if he had to rely on me for this one, so let’s say yes.
  12. Apply lipstick. I hope not. Though lip balm is perfectly acceptable.
  13. Wash Your Hands. Yes indeedy! Tap on, soap, rub, rub, rub, tap off, dry hands. I know the expert has a lot more to say, but I’ll settle for the basics.
  14. Shine Shoes. I’ve done it about 10 times in my entire life and I sincerely hope that my boy doesn’t waste his time learning this one. My rule is…don’t buy shoes that need shining.
  15. Tie a Bow Tie. Seriously, who wrote this? NO
  16. Tie a Windsor Knot. I’m finding it hard to imagine my child in a shirt and tie, but know that on the odd occasion it is a requirement. The Windsor knot? I’d say non-essential.
  17. Tie a Scarf. Yep, stay warm darling!
  18. Drive A Stick Shift. Let’s put it this way: if my precious boy gets his licence fair and square, then let’s focus on the road rules and staying safe, not on stick/auto issues. I’m assuming ability here people!
  19. Manage Your Time. A wonderful, respectful and valued skill. All we’ve got to do is learn how to tell the time first.
  20. Organise. Please. Please help mum to be organised.
  21. Handle a Job Interview. Ooh yeah! That’s a great skill to have.
  22. Ask For a Raise or Promotion. You better believe it.
  23. Give and Receive a Compliment. A wonderful social skill – a definite!
  24. Negotiate. He’s already negotiating like crazy without using much language at all. He’ll be brilliant at this.
  25. Shake Hands. Vital.
  26. Make Conversation. I can’t wait for the day when we start having lovely to and fro conversations. Absolutely.
  27. Remember Names. I am not good at it myself, so I think this would be a great skill for my boy to have. And if this is not something you are good at then, see 26 (minus names).
  28. Read Body Language. Well, its not something that is going to come naturally is it? But, let’s work on it anyway.
  29. Listen. So hard to do right now, but SO important.
  30. Improve Your Vocabulary. The only way is up!
  31. Speed Read. Give me a break. Just reading will be a massive achievement. So – no.
  32. Make An Educated Guess. Actually, I think we’d better just stick to the facts. No guessing please, educated or otherwise.
  33. Tell a Story. A wonderful, charming skill to have. Yes.
  34. Conduct A Background Investigation. I immediately think of ‘The Curious Incident of the Dog in the Night’ and ‘Meet The Fokkers’. Let’s steer clear of this mess please.
  35. Deliver Bad News. Something that requires sensitivity and compassion – beautiful qualities I’d love to nurture in my boy.
  36. Apologise. Everyone! Absolutely everyone! 
  37. Speak In Public. Even if it’s just a short sentence or saying thank you.
  38. Balance Your Chequebook. Gone the way of the dinosaurs. Managing your money? Of course!
  39. Save Money. Si! Mucho!
  40. Understand Your Pet. We don’t have one at the moment, but this is a lovely skill to have.
  41. Care For a Houseplant. See 40.
  42. Prepare for A Disaster. Yes. We have a few every now and then where we are, so it’s a part of our lives.
  43. Shovel Snow. No snow to shovel!
  44. Remove a Stain. So long as we get to the point where he can do his own laundry, I’ll be super happy. Stains – phooey!
  45. Do Laundry. See 44.
  46. Iron a Shirt. Haven’t used an iron in quite a while. Not likely.
  47. Sew a Button. Sure, we can do this. Non-essential, but achievable.
  48. Pick Produce. Yes please. Knowing when something is ripe and ready to eat, knowing if it’s past it’s prime. Understanding food. Yes.
  49. Buy fish. Sure.
  50. Paint a Room. Great skill to have, fun too.
  51. Hang a Picture. Still working on that one myself, but yes, I can see that it would be handy to know how.
  52. Write a Personal Note. A dying artform, thoughtfully given, cherished when received. Yes
  53. Make Tea. Haha!! We’re halfway there – he drinks it! That should be good motivation.
  54. Read Aloud. I’ll probably need him to be able to do this at the rate my eyes are going downhill.
  55. Relax. Oh, I would love this. Yes please.
  56. Wash a Car. Even better!
  57. Change a Tyre. Isn’t that why we join our auto clubs?
  58. Change Your Oil. He does love to pour, so I think he’d be great at this.
  59. Mow a Lawn. He loves using his play mower and he’s obsessed with the big mower, so this one is a winner.
  60. Fly a Flag. Not what I would call an essential skill.
  61. Garden. Let’s get grubby!!!
  62. Swing a Golf Club. Hey nonny, nonny NO.
  63. Swim. Yes, yes, yes. Working on that one and making progress.
  64. Hit a Tennis Ball. Maybe. He’s not really good with the hand eye coordination, given his visual impairment, but who knows?
  65. Give a Massage. Let’s say ‘highly unlikely’
  66. Make a Martini. Only if it’s for Mommy Dearest.
  67. Barbecue. Let’s see how we go on that one. He’s a bit obsessed with hot things, so possibly not the best match.
  68. Build a Fire. See 67
  69. Tell a Joke. Backburner…we’ll see!
  70. Be a Gracious Host. Oh but of course.
  71. Be a Good Houseguest. See 36
  72. Arrange Flowers. Seriously? Nope!
  73. Set a Formal Table. Just setting the table will do very nicely thank you.
  74. Uncork a Wine Bottle. No especially not a bottle of champagne with a sabre.
  75. Taste wine. No!
  76. Use Chopsticks. Yes!
  77. Make a Toast. Not make toast. A lovely generous skill to have.
  78. Breathe. Yes, I forget this myself sometimes, so just stopping and breathing – so good for you.
  79. Stay Warm. See 17
  80. Have Good Posture. Yes…don’t end up like me!
  81. Have a Great Smile. Done!
  82. Flirt. Hmmmmmmm! Not so sure. Will have to wait and see.
  83. Ask Someone Out. Yes!
  84. Kiss. Well I’ve taught him the basics, we’ll have to see if we can find the right teacher for the finer points.
  85. Buy A Diamond. I’ve never needed to know how…
  86. Plan a Wedding. Oh gee. Well if he’s like most guys that won’t be too hard.
  87. Change a Diaper. Something every well rounded person should know how to do.
  88. Hold a Baby. It’s a lovely and loving experience, so yes!
  89. Relocate. Nooooooooooooooo!!!!!!!!!
  90. House Train a Puppy. OK, maybe one day…
  91. Create a Family Tree. It will be an distinctive individually shaped tree.
  92. Decorate a Christmas Tree. Great, then he can teach me.
  93. Bake Chocolate Chip Cookies. I happen to know that this is a seriously good recipe , so this is definitely a skill to have up your sleeve.
  94. Give a Gift.  Yes, something everyone should know how to do.
  95. Wrap a Present. I’m not great at this, so if he gets good at it, this could be an important contribution to the family effort.
  96. Smile for the camera. Done!
  97. Take a Picture. I would love to see the world through his eyes.
  98. Learn a Foreign Language. English is foreign enough to him at the moment, let’s stick to that task.
  99. Plan a Trip. What a fun thing to do together. Or if it was just him, a magical mystery tour.
  100. Pack For a Trip. So long as I can come along Yes!
Well, sorry it’s such a long list, but I couldn’t cut it short. Turns out it’s not a bad set of skills for my boy to have. These are the skills of a well lived life. It’s not everything and there’s plenty of things in there that I could either learn to do or learn to do better.
Any other suggestions?

Lullaby

Day 27: Autism Awareness Month (3 days to go people!)

Warning! There is an image of the Letterstick Band in this post. Members of this band are deceased and this image may cause some family and friends distress. They are remembered here with a lot of love.

Music has always been incredibly important to me and has been a constant theme in my life. From the very early days I could always lose myself in a great song, a beautiful melody and a back beat. I was always sharing music through my playing, singing and hanging out in dives all over the countryside.

As a baby, my boy was sung to, rocked in rhythm and danced around the lounge room. I wanted him to share my love of music, but like most things it didn’t quite pan out the way I thought it would. Instead, I had a highly sensory, sensitive child and music was just that little bit too much for him to take. He did enjoy short musical experiences where he could touch the instruments and feel the vibrations, but very happy to walk away from it as well.

Lately though things are changing. He is taking more notice of music – enjoying it more, but still very sensitive to certain pitches and tones. There are particular songs and themes that can send him into a screaming, crying, ears covered foetal position. There are others that captivate him and make him smile. I even caught him trying to dance (very rare) this morning.

So I’ve been collecting lullabies and gentle music that is soothing and acceptable to him and I thought I’d share a few of our favourites with you.

The Putumayo Dreamland compilations are wonderful. Putumayo are a NYC based label who specialise in world music compilations. They have a great catalogue of quality music for kids from all over the world.

My favorites from this series are Acoustic Dreamland, Celtic Dreamland and the original Dreamland.

Quite a few years ago now I helped them in sourcing an appropriate Australian Indigenous track for their first Dreamland album. The track is from a group who is ‘family’ to me. They no longer play after losing band members to a road accident. I love this song, sung in Barrarra language of the An Barra clan from north west Arnhem land.

‘Yirrana” (sunset) by Letterstick Band

Here’s a beautiful cover of James Taylor’s ‘You Can Close Your Eyes’ by William Fitzsimmons from the Acoustic Dreamland album

There’s some amazing artists doing beautiful albums for children. Justine Clarke is an Australian actress who is making great albums and dvds that kids just love. Here she is singing ‘Creatures of the Rain and Sun’

And of course there’s the artists who just make luscious music that creates a relaxing environment for our kids. Here’s Lior with ‘Secret Little Garden’ (check out  his fabulous website)

And lastly (because I don’t want to use up all my available space in one post) here is a song from an Australian kids show Giggle & Hoot which is screened around bedtime each night. L hates the voices of the characters, but the songs are pretty good and this one in particular is a winner. Sweet Dreams everyone…

Two years ago…

Day 25: Autism Awareness Blogathon (ANZAC Day)

Two years ago today I was in surgery. I put my life in the hands of a remarkable surgeon. You will see why I think he is so amazing and I have a hunch that you will think he’s pretty amazing too.

I was in for a back reconstruction. Yes folks, I’ve got two titanium rods and 26 rather large screws connected to my spine. They go from T8 (between the shoulder blades) down to my iliac vertebrae and also into my hips. Contemplate if you will, the kind of surgery this might involve…not pretty. In fact it’s kind of nightmare’ish. So getting my head in the right place was going to be crucial.

So how do you get to the point of needing surgery like this? I have scoliosis. For the most part, since it was discovered when I was in my early 20’s I have been able to manage without too much of a problem. It certainly didn’t stop me from travelling the world, working at crappy jobs where I had to be on my feet for many hours or even from going out and dancing the night away in high heels.

As you get older, these things seem to become more of an issue. I went from having a 26 degree curve in my 20’s to a 48 degree curve in 2005. That’s when I had my first back surgery in an attempt to create a bit more space for the nerve that connects my spine to my right leg. This was an attempt to deal with the issue in the least intrusive way. But by 2010 the pain was back and getting more & more unbearable, I couldn’t stand for more than about 10 minutes – so waiting in a line to go to the bank or get your groceries was very painful. I was always on the look out for somewhere to sit down, somewhere to lean, anything to avoid that searing pain and numbness.

So I went back to my surgeon dreading the news he was going to tell me. Not knowing how that would impact on my life and my responsibilities. My curve was now at 80 degrees. It’s hard to imagine your back doing that and yet you still go on with a relatively normal life. I think my pain threshold was quite high. I was used to chronic pain and just got on with it. But something had to change.

When my surgeon said the next step was to have the spinal rods inserted, I wasn’t surprised. When I asked how long the recuperation period was and he said 12 months, I burst into tears. 12 months! How on earth was I going to manage this?

I asked for a 6 month lead in to my surgery date. I was lucky. I was able to prepare myself by losing some weight, organising my life, getting my head around what I would be in for and doing everything I could to make this time easy on the two little boys I had in my care.

Somehow, I had to work out how I could deal with a 12 month recovery plan, which included 3 months of no lifting/bending etc, while also continuing to care for my little boys. L was 2 almost 3 at the time and the other was a 9m old pudding headed darling who we called ‘little bubba’ (I’ve never been good at nicknames!). But if anyone out there is familiar with Family Guy, then little bubba looked just like Stewie.

Calling on my years of experience in managing projects, I put a plan together. I’ve got a reasonably large family and a pretty good network of friends. The only problem is, all my siblings and most of my friends live far, far away.

The plan I hatched was to ask everyone I knew to donate a week to come and stay with me and help to look after me & the boys. It actually worked out pretty well and after much to’ing & fro’ing I had the next few months sorted. Backing me up and providing the all important care of the boys while I was in hospital (10 days) and the first week out was my dear old Mum & Dad.

I was in a good head space going into the hospital. I was as ready as I would ever be. I just had to hand my life over to the surgeon. I was in surgery for 8 hours and when I came to in ICU it took a few seconds to remember what had happened. But then the pain kicked in, quickly followed by more meds.

There were a couple of nurses looking after me and both were from India, so they spoke to each other in their language and as I drifted in and out of consciousness, I couldn’t work out where on earth I was – what country I was in – it was very confusing. I was there for a couple of days before they moved me into the coronary ward. Right towards the end of the surgery my heart started playing up and almost stopped. I almost gave my poor surgeon a heart attack! So I came out of surgery with an additional cardiovascular specialist.

I didn’t want to worry my little boys but there was nothing I could do to prepare them for my absence. My days in hospital were challenging to say the least. I was on a lot of drugs, very strong pain killers, quick release for break through pain, slow release to keep me just over the line, something for the heart, stuff to keep my system moving, every time I woke up I had to take another handful. I didn’t want the boys to see me in pain and not able to reassure them, so I told my parents not to bring them in.

On about the second last day they disobeyed me (!!) and brought them in to see me. It was amazing to see little L walk through the door, not knowing that I was in the room. When he saw me, he nearly dropped to the floor in shock. He couldn’t believe it was me, he was so relieved. I asked Mum to put him up on the bed beside me. He laid down and very carefully cuddled up beside me and within a few minutes had fallen into a deep, deep sleep.

Something had happened while I was going through this intense experience. I knew it was going to happen and I knew I couldn’t be there for it. I had to send my mother along instead. It was the appointment at the hospital when, after 6 months of observations and information gathering, the doctor was going to let us know L’s diagnosis. I was not surprised when I was finally able to check with my mother on what they had said. Yes, it was autism.

a composite photo taken during surgery

 

rods & screws

The Goalposts Just Shifted

Day 23: Autism Awareness Blogathon

I know that as a parent, you spend most of your time dealing with the practical aspects of parenting. When your child has autism we do the same thing, but we don’t have the assurance of the future that you do with a neurotypical child. We don’t know what our/their future will look like. So we focus on the day to day and try not to get disappointed with ourselves for dreaming about this mystical, clouded  idea of a future hoping it will be full of happy, meaningful independence. Because, seriously, we have NO idea what it will actually look like.

On the weekend I attended a really fantastic conference session presented by Michael McDowell of the Childhood Development Network – one of our local private multi-disciplinary clinics here in Brisbane (Australia). And now I know why this Paediatrician has had his books closed for some time! Here’s the rundown from the session:

Our goalposts as parents need to be on our child’s transition to adult life. If we frame what we do as our children are growing with that pivotal point in mind, then we can effect great change. Most importantly our decisions can be made with this child & family focused outcome in mind rather than what the therapists/teachers/specialists etc. might think, however good their intentions may be.

There are four main areas to consider:

  1. Mental health and happiness
  2. Social participation
  3. Vocation/meaningful daytime activities
  4. Independence to the greatest degree possible

Using these four categories, look at constructing a plan which focuses on the next 6-12 months but with the bigger goal of transitioning into adulthood with all four areas optimised always in mind.

McDowell suggests developing a ‘team’ drawn from our community. Look to your extended family, work, sport and social groups, teachers, kids in your child’s class and within the broader school. Identify who you might like to include in your child’s team then look at how you might bring them into the team.

Develop a simple profile of your child remembering that you are controlling the message and the information you are sharing about your child. The profile should include the positives – what your child is good at, likes and what is likeable about them; the difficulties – what is unexpected or hard for your child and how they adapt; and the reasons it may be difficult for your family, the challenges you face in caring for your child.

Communication needs to be parent driven, keeping the team informed, bringing them together to share ideas and celebrate successes with your family. The team can be fluid with roles and goals delegated appropriately, but are all committed to working with your family to assist you in achieving the best possible outcomes for your child.

It’s important to keep in mind that we want our children to enjoy being themselves. Their positive self awareness, how they think about and manage themselves as adults, stems from feeling safe and loved within their family and wider community and this in turn builds resilience.

I don’t feel like I’ve really captured the spirit in which this information was delivered. It was actually quite empowering whereas what I’ve written above sounds a bit clunky. I really like the idea of planning with the end goal in mind and I feel like I already have the makings of a ‘team’ – people who love and care about my child. I know I need these people in my life whether I formalise their roles or not. I had to call on quite a few of them just to be able to attend the conference (3 different babysitters on each of the two days!). 

One of the most important messages this guy had was to focus on the family as a whole, not just the child. Our children need their families to be strong and happy, not worn out parental wrecks who are angry or divorced and sullen, resentful siblings. So go now, get off the computer and give your partner a warm cuddle and tell them that you love them. 

Our Amazing Children

Day 22: Autism Awareness Blogathon

At the start of April stark raving mad mommy Jocelyn Gray put together a beautiful video to show the world just how incredible all our kids are and to put the human face to autism, a scary word for the uninitiated.

She writes with great heart and lots of humor. But sometimes a picture just says it all, so here it is for you.

The Mean vs Your Kid

Day 20: Autism Awareness Blogathon

It would break my heart to see my child bullied. He’s little, light framed, vulnerable and trusting. Why would anyone want to hurt him? Did you know that research (Little 2002) showed that 90% of children with ASD are bullied? What a statistic!

Today I went to a dynamite one day conference which featured Prof. Tony Attwood & Dr Michelle Garnett from Minds and Hearts,  a clinic specialising in services to the autism community. Bullying wasn’t the only topic covered today but it is the topic I want to write about tonight.

Coincidentally, the other day I read an incredible gut-wrenching post by one of my fabulous bloggy pals about her experience of bullying in high school. I hope you go over to ProfMomEsq to read it. She nailed it when she called the whole experience The Mean.

We know our kids are easy targets and if your child is in a mainstream educational environment, then they might as well have a target pinned on the back of their shirt and ‘victim’ tattooed across their forehead.

When bullying enters the picture, all the years of good work we have done in integrating our kids dissolves away as they become even more socially isolated, depressed, unable to learn because of high levels of anxiety and lashing out aggressively when their limits are reached, often resulting in suspension or other penalties.

So we need to be vigilant for our children, but not vigilantes. We need to keep an eye out for the signs of bullying:

  • lost or damaged possessions
  • torn or dirty clothing
  • bruising or other injuries
  • heightened anxiety
  • interrupted sleep
  • school avoidance
  • unusual explosive responses
  • paranoia
  • changing of special interest areas to the protective (guns, weapons, violence & retribution)
  • mimicking bullying at home with siblings

Sadly, bullying is ingrained within our culture. It is not restricted to the school yard. Bullying rears it’s ugly head in the workplace, in our social lives and even in our own homes.

It’s incredibly depressing just thinking about it. What do we do? How can we change this situation? We’re already fighters, survivors, warriors. We haven’t sunk into the muddy trenches yet, even though sometimes we just allow ourselves to feel the weight of the battle wash over us. So yes, this is another fight we must get through. We must!

What a relief it was to get to the section of the presentation today when they finally gave us some good news. There is something we can do. There are strategies that can be introduced to reduce bullying.

Ideally, the whole school needs to get on board with a zero tolerance for bullying in policy AND it’s practical application. Staff education, consistent application and an agreed concept of justice and appropriate punishment are all vital ingredients. There are good books, workbooks and other resources available to assist with that including:

  • Gray’s Guide to Bullying, Carol Gray
  • No Fishing Allowed, Carol Gray, Judy Williams
  • Perfect Targets, Rebekah Heinrichs
  • Being Bullied, Nick Dubin

You can create a Map of Safe and Vulnerable Places for your school. This identifies the locations where bullying is most likely to occur – areas where there is limited or no supervision like hallways and bathrooms. It also shows the safe havens for our kids and this is where they need to be in their breaks. Places where there are other kids (witnesses!) and that are supervised.

Most importantly, all children in the school need to become aware that they have a responsibility. If they see bullying and don’t do anything about it – then what does that say? The ‘silent majority’ of kids do not bully or condone bullying, but they need to do more than that. Why? Because what made a child one of the 10% who didn’t get bullied? Friends.

Buddy systems, where a group of 3 – 4 kids who are willing to come on board, learn about autism, learn about your child in particular and be there to help out in a range of situations: a social buddy, an academic buddy, a sports buddy. Promote good examples of where someone has stood up to a bully as an act of heroism. Create the opportunities for disclosure and value it when it happens.

You also need to help your child learn how to recognise and respond to bullying. Ignoring the situation will only make it worse, so help them by practicing role plays where they have a script that is assertive, constructive and true to them. Practice self calming techniques. Do not let them believe that they are the abusive words used by bullies.

Create a Grievance Book where issues or incidences are recorded and copies provided to the Principal, the Teacher and also kept at home.

Create a Boasting Book to record your child’s successes in dealing with this issue.

Last but not least, involve them in a sport or marshal art where they are able to learn about defending themselves (but not attacking others).

Well, I don’t know about you, but I’m emotionally exhausted after that!!

Note: I’ve used some of the information from the presentation today in this post – so acknowledgement to the wonderful work of Attwood & Garnett. 

You Are Getting Veeeerrrrry Sleepy

Day 19: Autism Awareness Blogathon

A few years ago I watched a fascinating documentary all about sleep. One of the  stories it told was of a person whose brain switched off the sleep button and never turned it on again. There was nothing this guy could do to get to sleep. He went to hospital where they tired all kinds of things to help him. In the end he became psychotic, his body started shutting down and (take a breath) he died. From getting no sleep.

Many people on the spectrum have sleep issues. It’s exhausting for them and exhausting caring for them as when they are awake, you are too. Melatonin works for some people, but not for others. Massage, oils, warm baths, warm drinks, blockout curtains, regular sleep/wake patterns, white noise machines, you name it, we will try it if it means we might get some more sleep.

image credit: bepositivemom.com

Today a good friend and autism mum posted the following message on our trusty friend facebook.

Well I’ve been a mum for 5.5 yrs now. Sleep deprivation is all too common for parents that have children with disabilities. It’s not like newborn broken sleep, it’s not like teething broken sleep or bad dream waking during the night…. it’s just on a WHOLE different level. It doesn’t go away, or stop all of a sudden because your toddler has stopped teething or baby has stopped night feeds or are old enough to go out have a big day playing with friends and getting worn out. It’s the sort of thing only a parent with a child with a disability that has some sort of sleep disorder could even comprehend.

I used to tell myself when my 2 were babies ‘this waking at night.. its only a moment in time, it will pass, they will grow up and out of it’ and that mind set helped me so much. But so many parents who are in a situation similar to mine and harder, don’t know if it will ever change. Learning to ACCEPT living on little sleep is a must so you don’t kill anyone trying to find a way to ‘get sleep’.

I’m tired, god am I tired…but I can never help myself thinking about parents who have been doing this longer than 5.5yrs. What about the parents out there who have children in their 20’s+ who live with them and still need 24/7 care, and they get up every night for 20+ yrs to help their children to calm, feed, toilet, change adult nappy or fix tubing or to do what ever is needed. I have so much admiration for these parents. It’s a long, hard tiring road.

Will I be one of these parents? I don’t know but it’s the love for a child and thinking of those parents who have been doing this longer than me that helps me get my ass out of bed at night after night after night. I have a few friends that are in the same boat but it is so hard to explain to people what it’s like so I’m just going to put it out there for everyone!

I wish!

Thanks for that tiny little slice of your life Candice. I used to hate that saying ‘whatever doesn’t kill you makes you stronger’ but that was before I became an autism mum.

Now here’s an adults bedtime book read by Australian actress Noni Hazlehurst to cheer us all up (warning – language! don’t press play if swearing offends).

image credit: doubleday