The Finale

Day 30: Autism Awareness Blogathon (Final Post)

I made it! 30 days and 30 posts for autism awareness and acceptance. It has been an amazing experience for me. Most of the time it has been easy. I’ve known what I wanted to write about and the words have just flowed. Other times, it’s been really tough. I’ve fallen asleep and woken up with a startle hoping I have enough time to write and publish before midnight strikes. Some nights the babies just won’t go to sleep, so I’ve been holding them in one arm and doing the fastest one handed typing I could with the other.

My domestic duties have suffered (ummmm where IS that vacuum cleaner??? and I think my mop may have died sometime around mid-April), but I was on a mission and I would not be deterred! I tried to think of the people who read this blog, there’s a very broad mix of folk and many of them have nothing to do with the world of autism. Could I keep them entertained and interested while opening this window on my life? I also worried a bit. Am I now officially the world’s most boring and relentless blogger? Oh no! Not another post from Rose… enough already!

So now that I’ve made it to the end, I want to say thank you. Like any good speech, there’s some people who need to be mentioned. The blogathon has consolidated a group I call my ‘bloggy pals’. They are present and accounted for online. They are all wonderful writers themselves and they seem to get me.

So a heartfelt thanks to:

George from Coalescence. What a faithful and thoughtful friend you are. I know you have read and commented on every single post this month. You have cheered me on, encouraging me to feel that my writing has purpose and meaning to others. You are such a great find.

ProfMomEsq – I can’t quite remember who discovered who, but I am so glad that it happened. I love your heart, your humor and your smarts. You’ve got a way with words and a lot to say that needs to be said.

Thanks Cynthia at That Cynking Feeling for all the shares and the links and especially for the co-blog we did on the senses (yours and mine). That was fun to do.

Sarah at Crazy Antelope and I have a lot in common – 3 boys who are brothers by pure genius luck and brought together by love. Also autism, crazy neighbours, Australians and so much more.

Ruth – my IRL friend and dedicated reader of my blog. I love our late night chats. Thank you for your encouragement, inspiration and big, big heart.

Judy – I feel like you are shining a light in the darkness and beckoning me forward, telling me to be brave, that it’s going to be OK. Thank goodness for you.

For all my lurkers and likers – I know you’re out there and I’m glad that you are. Thank you for reading and for your silent approval. I figure if you didn’t like it, you wouldn’t come back, so thanks for coming back.

Family and friends – you help me laugh through my tears and well up when the good times roll. I may be a single parent, but I couldn’t do it without your love and support.

Officially signing off on the blogathon. Regular services will resume soon.  Here’s some pictures.

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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.  

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…

Mothers Supper Club

Day 26: Autism Awareness Blogathon

Last week I got to meet up with a new bunch of mums. The connection had been made through the parenting course that I finished a few weeks ago. A couple of the other mothers who attended were a part of this group and they had been getting together for some time, but lucky for me they were open to some new blood.

I was sent the address of the mum who was hosting this month. It was in a suburb I had never ventured into, so I had no idea of where I was going or what it would be like when I got there. Luckily I had arranged with Louise for us to travel together – that made it a bit easier.

It was a beautiful autumn evening – not too cool yet but a little nip in the air. How lovely to find that we would be sitting outside around a fire. We were surrounded by enormous trees, rocky outcrops, a dry creek bed, nocturnal marsupials and lush vegetation. You’ve got to love Brisbane surburbia when it can be like this – what a treat!

We chatted and drank and ate and when I checked it was already past the time I’d told the babysitter I be back by. Too quick!

It’s such a gift to have times like these. Good people, all from very diverse backgrounds and experiences brought together by circumstance and our beautiful children.

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

D Day

Day 24: Autism Awareness Blogathon

It was D Day at school today. The education department provides a dentistry service which is available for all children who attend state schools. For children attending special schools, the service is more tailored. The dentist/s come to the school to have an initial look at the kids chompers and if any work is required, then appointments at the clinic are required and with many kids, that involves general anaesthetic. Please….please don’t make us go there!!!

can't help but think it will be like this

Needless to say, I was a bit nervous. I am currently responsible four four sets of teeth. Keeping them all clean is up to me alone and I feel that responsibility heavily. I’m lucky that L doesn’t have a particularly sweet tooth. He has no interest in lollies/candy – you’d get a better reaction if you gave him a stone! He has discovered chocolate more recently, but would never ask for it, has to be convinced to try a little piece and then he remembers that it is something that he likes.

you know you gotta

We’ve been working on the teeth cleaning routine since he’s had teeth and it’s only in recent months that he will willingly open his mouth wide enough so that I can ‘access all areas’. Well just for a minute, but I’ll take that! An electric toothbrush has been helpful as the sensory input is both enjoyable and calming for my boy. So I’ve done my best but I was a little nervous on getting the verdict from the dentist.

watch out...I'm coming in!

I shouldn’t have been! Yay me! Teeth all in good order. Woo hoo! No decay, only grinding (which I already knew about) The dance of joy!

 

doing my happy dance

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 Fairy Catcher

Day 21: Autism Awareness Blogathon

Just a quick one tonight. Conferencing is sooooo draining. But making the effort to get down to the river to watch the new Tim Sharp Laser Beak Man image projected onto the William Jolly Bridge, was a lovely way to see the day out.

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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.