I Am Living With Yoko Ono

Not really. But I might as well be. Seriously, she does a pretty good version of what I have going on from about 5am – 7pm day in, day out.

My darling 6yo has become a noisemaking machine and it’s doing my head in.

You can take it for an hour or so. But as the day rolls on, the volume goes up, the excitement levels escalate. The quite acceptable, gregorian chant-like droning becomes screaching. My one remaining nerve just got squawked into oblivion and … I’ve lost it, again.

It’s stimming. Noisy stimming. The ribbon is flapping and flicking. He’s jumping around like he’s on fire with those whole body Peter Garrett dance moves.

Yep – Yoko Ono + Peter Garrett = my life.

Meanwhile, I’m trying to go to my happy place where sound cannot hurt me. I’m breathing deeply, I’m staring off into the distance, transporting my tired, dehydrated, overworked brain to quieter times.

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But then I snap back to reality, and the boy is happily slurping down the dregs from that double shot espresso I made for myself this morning. Hmmm. There’s something about the smell of coffee that speaks to my sweet boy. At least he is quiet for a moment.

Well. Autism mums are nothing if not lateral thinkers, especially when feeling slightly de-railed. So my short term solution is –

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I would fill my ears with cement but then I couldn’t hear all the fabulous language he is coming out with in between all the horrendous noise. I’ve waited years to hears these words, these phrases. They are sweet little drops of heaven in between the devilish cacophonic soundtrack.

Special, Very Special

I hope so...

I hope so…

In a couple of weeks school will be back in after our long, super hot summer holiday. Australia runs on a calendar year system so for our kids, it will be the start of a new school year. All the back to school sales are happening. Parents are busy buying new shoes, uniforms, bags and all the bits and pieces our kids need to kit them out for the year.

This time last year, we were in that grey zone where L had finished at his early intervention centre but hadn’t started at his special school. I didn’t know who his teacher would be or what it would be like for him to commence his formal schooling years in a new environment with new people and new everything!

The process of trying to work out where he should be going to school had been torturous. Never having done this before I thought I’d start with our local state school, meet with them and see what they had to say. If I had wanted to, I could have sent my boy there. They can’t refuse you if you are living within the ‘catchment area’. The question was – would this be the right learning environment for my child? Could I picture him in this space, in these classrooms, with this many kids in the class, learning? What kind of support would he need, or more importantly would he GET to make this work for him?

I visited a couple of schools, taking along information about him, questions for them but in the end it was my gut response which helped me to make the decision that a special school was where he needed to be. Of course, it wasn’t totally up to me, he had to meet certain criteria to be accepted. No problems there!

My visit to our local special school included a chat with the school counsellor, meeting the principal of the school who then took me on a tour of the school showing the different facilities as well as the different classes and the kind of work they were doing, from the junior school through to senior and transition from school. I got a run down on the school philosophy and was told about the ‘arts infused’ curriculum. I got a great sense of the community that they nurtured at the school. And yes, I could picture my boy there: having fun, learning, supported, understood, valued.

So off to special school he went, riding the short bus in his booster seat. Naturally, it took him a while to settle in to the new routine and new everything. There were a lot of behavioural issues in the first half of the year as this settling in process took place. A bit of regression and a bit of agression. But week by week, term by term he was making progress.

I got to see little snippets of his school experience throughout the year, but my main method of knowing what was happening was through the communication book where his teacher & I would communicate about what happening. (Apparently it’s never happened before, but we used up nearly two whole books with all our communicating last year. The blogger in me may be influencing the situation!) Parents were invited to come along to participate in various activities but it was pretty clear by the shock on his face every time that I would turn up, that he considered school to be ‘his’ domain. That I didn’t belong there. I guess he’s right in many ways.

So he has come through his first year of school and has the first building blocks of his formal education in place. Some literacy – learning to recognise and spell his own name, learning to recognise and write some letters; some numeracy, counting to 10 and back. Most importantly though, he is learning how to learn. Not easy for a little guy with a lot of challenges but possible, achievable. And that is what his school has taught me!

the longest journey...

We all know that the greatest journeys start with the first step. It has felt at times like we’re just looking at our feet as they shuffle on the spot, dance around for a while, and then, miracle of miracles, slowly take a single step. Even the idea of the destination is so far off in the distance, shrouded in a haze of mystery, too uncertain to contemplate. But my boy has taken those first steps. This year he will take a few more and I can’t wait to find out where they will lead us.

One of the best things I did was to prepare an ‘All About Me’ document. It’s written in the first person, as if your child was talking. It gives the people who are teaching, working with or caring for your child, a road map to your child. It’s a document that gets updated as time passes. I give L’s All About Me to his school, to babysitters, respite carers, his therapists and paediatrician. Here’s a list of the headings you might want to include.

All About Me!!

  • Communication
  • Sensory Needs
  • Food & Drink
  • Toileting
  • Play
  • Obsessions & Behaviours
  • Calming activities
  • Specific Info on any safety or other considerations that may be helpful

morning routine

Routines to practise together before school starts:

  • ƒ Eating breakfast
  • ƒ Dressing in school uniform
  • ƒ Putting on school shoes
  • ƒ Packing and unpacking a school bag
  •  Wearing their backpack/carrying their school bag
  • ƒ Doing hair and cleaning teeth
  •  Eating snacks & lunch independently
  •  Being ready on time for the bus, drive or walk to school
  • ƒ Driving or walking past the school and talking about it
  •  Going to bed the night before school/getting enough sleep
  •  Toileting routines

ƒHere’s some ASD specific resources that might help you with preparing your child with starting school &/or the new school year.

Happy Child Starting School

Amaze Starting Primary School

So…one more week of holidays for us. Good luck with getting your little darlings back to or just to school.

The Boy Who Changed It All

He couldn’t tell you how old he is. He didn’t really know that it was his birthday. He doesn’t like unwrapping gifts. His eyes don’t widen in wonder when he sees the present you have put so much thought into hoping that it will be just the thing for him.
But this little boy, who turned 6 last week, is the apple of my eye.

So here are his 20 questions to mark the occasion.
1. Favourite toy – ribbon
2. Favourite character – peppa pig
3. Favourite tv show – peppa pig
4. Favourite fruit – mango
5. Favourite lunch – baked beans
6. What makes you laugh – being naughty
7. Favourite game – chasey
8. Favourite snack – brekky
9. Favourite animal – chickens
10. Favourite song/music – mascagni’s cavalleria rustica intermezzo
11. Favourite book – telephone book
12. Best friend/s – brothers N & J
13. Favourite treat – milkshake
14. Favourite outside activity – running
15. Favourite holiday – the farm
16. Favourite drink – ginger beer
17. Favourite take away – garlic & pepper fish
18. Tucked up with you at night – ribbon & rabbit
19. Favourite breakfast – muesli
20. Birthday dinner – spaghetti bolognese

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Snap & Patience

It’s a bit of a tradition to play some cards or board games during the summer holidays and especially on Christmas day. I did, but that is not what this post is about.

While I was at the beach last week, I was casually sweeping the floor – the sand these kids trail through the place is phenomenal! As I went about my task I heard a very loud, distinct and unusual pop sound  from my back. I froze. My friend who was in the same room, was looking for where the noise had come from. She thought it sounded electrical, but I knew it was mechanical.

Almost 3 years ago I had major spinal surgery where I had two titanium rods screwed into either side of my spine from my shoulder blades (T8) to my sacral spine (S1) and into my hips. I wrote about this experience in more detail here.

I knew something had happened to my ‘hardware’. I was afraid to move, but as I attempted some small movements, I found that I could. Apart from the initial sudden pain, I could move without much pain at all. My mind was racing, trying to figure out what might be going on inside my body.

My initial thought was that I had popped a screw. This can happen when there is too much pressure on the area, where the fusion has failed or when there may be deterioration of the bone the screw is in.

That night I could feel things moving around. Every time I moved, my back would creak & groan like an old barn door. That is a weird feeling, let me tell you.

The next day, as planned I packed the kids up and headed home. I knew I would need to get an xray, so had to book in with my doctor. I managed to get a cancellation on the very last appointment of the day, on the last day she was in before taking her holidays. I’m lucky to have a really great GP.  Still not much pain, but I’m walking stiffly and the groaning and grinding coming from my back continued.

The following day I spent all morning trying to find someone to look after the kids so I could get in for the xray. With many friends away on holidays, my support network was a bit thin on the ground. I finally gave in and asked my poor aged parents come come over to watch the boys – something I’m trying not to do. The boys love them to death and they love them right back, but they are elderly now and having a whirling dervish (L who is about to turn 6 and has autism & an intellectual impairment) a 2 year old (N – say no more!) and a future heavy weight champion (J – 18m) – well, let’s just say it can be quite a draining experience.

I head off for my xray and I can see by the look on the sonographer’s face, that apart from having a lot of hardware, there is something going on. She suggested I come and have a look – and there’s the snap part of the story. Both my rods have snapped.

If Frieda can do it, so can I!

If Frieda can do it, so can I!

Here comes the patience. I ring my surgeon’s clinic, but…it’s the summer holidays and he is on holidays in another part of the world. He will be back on the 15th. I’ve been talking to his clinical nurse who is one of those super efficient, dynamic, right hand woman kind of people. I feel a bit better every time I talk to her. She is also on holidays and has been ringing me daily to check that I am OK. Instructions are to wait, do NOTHING. Do not lift, do NO housework, take it easy. Did I mention I have three little children in my care? If anything changes pain-wise, I need to get me to emergency asap.

I'm doing my bit!

I’m doing my bit!

So apart from shedding some tears, losing my cool regularly, feeling a bit depressed about my lot in life and feeling overwhelmed by what it might all mean – more surgery, massive amounts of support and help needed on a 24 hour basis, having to tell everyone (hate that and yet…here I am dear reader), dealing with the bureaucracy that is child protection etc, I am trying to stay positive, make a plan and recruit some help.

In general, I’m good until I’m not good – like today when L made a diabolical smeary mess all over his room, bed, carpet and himself. That’s not something you can ring and friend and say, drop everything, get over here and clean this shit up – literally! That’s when the going gets tough. Sorry for sharing that – there’s somethings you really shouldn’t share and that’s probably one of them, but it’s late and it’s my reality.

So, patience, people. I’m working on it. I’m also working on my optimism. That is all.

Help

A New Year

School’s out for the summer here. We’ve got 6 weeks of schedule free madness to manage. But before I fill you in on the holiday plans, I want to tip my metaphorical hat to L’s school and in particular, his teacher. I have been so happy to see the progress L is making and school is such a big part of that. Knowing that he is in the right learning environment is an enormous relief.
On ‘awards day’ L received a certificate for his ‘improvement in his expressive language’. He is doing more and more talking, requesting, trying new words, finishing sentences, answering questions etc. so I think I can officially say that he has gone from being ‘non-verbal’ to ‘verbal’. How absolutely amazing is that?
2012 will always be remembered by me as the year of the ‘mate’. L started calling everyone (including me) mate. This started back in August when I attended our annual foster care conference and one of the people who cared for him while I attended a session or two was a lovely man who also used this turn of phrase. It has stuck, in a big way! From first thing in the morning – hello mate! to the last thing at night – night night mate, love you mate! He’s even got me saying it.
We’ve had a pretty torrid time with N, who will be three in a couple of months. He’s been swinging from being an incredibly cute, articulate and adorable little guy to resembling a certain character from The Exorcist. I kid you not! He is testing me to my very limits. I know, he’s 2! But sadly there’s more to it and for him, attachment issues and emotional dis-regulation are really dominating his world at the moment. All I can say is, we’re working on it. Working hard. Real hard. Luckily, tomorrow is a new day and he gets a clean slate every morning.
J is now 18 months old and powering. He is a very smart little cookie. A delightful little guy who charms everyone. He is on the verge of a language explosion. He is gifted with incredible strength and physical prowess but is also a gentle and loving little soul.
We are at the beach now and everything is new, exciting and challenging. The kids are loving it but L has not taken to the water, finding the beach to be a sensory overload, but managing to be happy sitting on a beach chair with a few heavy beach towels draped around him just watching everything happen.
It’s new years eve tonight and we are in a truly beautiful part of the world. The kids have just had a big dance/run/scream/giggle in the cool evening air of the front verandah. I’m writing this as J is twirling my hair and going off to sleep. The other kids are staying up a little later than usual to celebrate the end of the year and the start of a new one.
For me, I’m hoping for a year that has some regular time where I can focus on myself and where I can do more writing. I’ve got lots of other things I want to do this year but I’m keeping it simple!
For you, I’m hoping that 2013 brings you lots of laughter, happy times with friends and family and lots of love and many happy memories to be made.

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