With Flying Colours

This image came up on my Facebook feed today. It’s the kind of list I like. As the parent of a child who gets measured against all kinds of lists of skills and then classified according to his deficits, this is my kind of list!
I’m happy to say that my little boy is doing very well in most of these areas.
That makes me very proud of him and his progress towards a life rich in experiences, relationships and wonder.

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All You Need Is Love & Laser Beak Man

Last weekend at TEDX Sydney at the Sydney Opera House, two people I love very much took to the stage and squeezed their inspiring and uplifting story into the confines of a 10 minute (or so) presentation.

Tim Sharp is a wonderful artist who created a superhero called Laser Beak Man at age 11. Laser Beak Man is funny, irreverent, cheeky, kind and so very loveable. Tim is all those things too, but he is so much more. He also happens to have autism.

Judy Sharp is a mother. She is also a survivor. She has singlehandedly raised both her sons to be good, kind, thoughtful and generous men. That in itself deserves a standing ovation.

Tim & Judy Sharp together are a force of nature. Undeniable and impressive. This will make your day. It is hopeful and it is powerful. Their story will get you through those dark days when your child is screaming and kicking and terrified and confused and overwhelmed.

Tim & Judy Sharp at TEDX Sydney (once you click through, go to the right hand arrow to find Tim & Judy’s presentation)

Tim & Judy TEDX Sydney

Tim & Judy TEDX Sydney

Laser Beak Man knows iT!

Laser Beak Man knows iT!

 

Marking the Occasion

Tomorrow is ANZAC Day. It’s a big day for Australia. It’s a day when we remember and acknowledge the sacrifice and commitment of our service men & women. It’s a public holiday & we all get a long weekend.
So today L’s school held an Anzac Day ceremony. This is quite a common thing but for L’s school, it was only the second time it had happened.
All the kids were very excited and noisy. They were all very happy to have a soldier at the school and they were very interested in his medals. One of the school rules is ‘use your voice’ so the Principal asked everyone to ignore that rule for this one special time. (Good luck!!)
It was great to see the various kids from the school council participating in the ceremony. There were wreaths laid, the flag was raised then lowered to half mast, the last post was played, a short speech about what Anzac Day was about and the national anthem sung.
These are the rituals of our country. Rituals everyone can participate in.

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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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Catch Me If You Can

Another year has ticked over for my boy. This week he had his 7th birthday.

birthday candles

Yes, he’s still irresistibly drawn to heat & fire.

It’s been a big, big year and he’s come a long, long way. Today (after a bit of coaching) he was able to answer the question – whose birthday is it today? with ‘It’s MY birthday!’ Now to most people, this is not that amazing, but for my little darling…well, let’s break it down a little.

  • He was able to remember and respond consistently with an appropriate answer to the question
  • He is using pronouns – he can talk about himself from his own perspective, not it the third person (this is very new for him)
  • He was able to share his birthday with others (cup cakes at vacation care and later on at home with the grandparents)

In the last year his language & communication has taken a quantum leap. So much so that he took out the literacy & communication prize at his end of year school celebrations for the junior school. It doesn’t seem so long ago when I was not sure if he would ever become verbal. I don’t really care that he won a prize but the acknowledgement of the enormous effort he has put in is incredibly heartwarming. Mind you, he is still doing a LOT of screaming/noisemaking, but at least now, I can ask him to use words or tell him to go outside & annoy the neighbours and he may (or may not!) chose to follow my directions!

This year he has grown like a weed, eaten like a horse, stayed skinny as a rake. He’s lost teeth and made & friends. He’s had lots of fun and has also faced lots of challenges. He started reading phone books (I may be wrong, but he can’t read yet, he just really seems to like the look of tiny little print/text). We’ve also tried some medications but not found anything that actually helps him. He now has a total of four diagnoses (not that I’m counting!).

He has continued to explore and develop a love for music (this makes me so happy!) – yesterday he dragged the old house guitar around with him everywhere. When I played some chords for him – HE wanted to do the strumming and HE chose the song, by singing the words. I had never really heard him sing before, so this was a complete revelation for me. He’s definitely not one of those kids who has an extraordinary talent, but he has a real & genuine interest and that is a beautiful thing.

He’s picky about the music he listens to and he has an evolving preferred style – lyrical & emotive. He likes a variety of styles including early Elvis, Portuguese fado, romantic classical and believe it or not, kd lang. If I put some music on, he takes over and changes it to something HE likes. He knows the albums he likes and goes straight to the tracks he likes, then we listen to them on repeat, repeat, repeat…. He didn’t like the change to the new IOS because he wasn’t able to find his songs in the same way that he had been doing previously. Now, just to put that in perspective, this time last year he didn’t even want to touch the ipad.

He also has a developing interest in logos. His favourite is Target. He checks all his clothing labels and is very pleased indeed if they are from Target.

So my boy, happy birthday to you. This year we are learning about backyard basketball!

I love you.

Here’s your 20 questions and a photo that sums up that last seven years.

On Your 7th Birthday 2014

1. What is your favorite toy? Ball
2. Who is your favorite character? Peppa Pig
3. What is your favorite TV show? Waybaloo
4. What is your favorite fruit? Banana
5. What is your favorite lunch? Baked Beans
6. What makes you laugh? Tickles, being naughty
7. What is your favorite game? Chasey/running
8. What is your favorite snack? yoghurt
9. What is your favorite animal? Dogs
10. What is your favorite song?  Jericho (kd Lang)
11. What is your favorite book? DOGS (birthday pressie)
12. Who is your best friend? Madison & Ahmed
13. What is your favorite treat? milkshake
14. What is your favorite outside activity? Chasing waves at the beach
15. Where do you like to go for a holiday? Beach
16. What is your favorite drink? Ginger Beer or Cup of Tea
17. What is your favorite take away food? Don’t care
18. What do you like to have in bed with you at night? ribbon
19. What is your favorite breakfast? Pancakes/French toast with maple syrup, a mashed banana & a cup of tea
20. What do you want for dinner on your birthday? lemonade (sad but true)
photo by Carly Cain

photo by Carly Cain

It’s OK

Here’s a catch up on what’s been happening in my world:

Baby B is 6 months old and happy as a bumble bee in springtime.

It’s springtime.

L has started on medication to help him to focus, stay on task and retain information. It’s helping.

L&J

J, at almost 2 & a half is finally starting to talk. He helps me to unload the dishwasher and we name everything as he passes it to me. He strikes a pose as he passes me a ‘bowl’, I strike a pose to receive it and confirm, yes it’s a ‘bowl’, and on it goes.

We miss N very much. A couple of weeks ago we were looking at photos and when J saw one of N – he pointed at it and burst into tears.

Being a kinship carer is a big deal and quite exhausting some days.

L is very interested in the Target logo. He now checks all clothing tags to see if it has the precious logo. He only wants to use the towel with the target tag. When we drive past a shopping centre ‘Target! it’s Target!!’

label love

J is moving to live with his baby brother who I was unable to care for because Baby B was coming my way. So his little brother went to another placement and now, he is moving there so that these two siblings can grow up together.

I’m heartbroken about that. But I know they need to be together.

heartbroken

I have had a relentless schedule of appointments and people coming into my home ALL YEAR! Last week I had 6 appointments, supervised two family contact visits, had professionals/support workers in my home on 5 occasions, and on & on.

I also went out to a gig to see some old friends play and (on another night) to a pyjama party. Going out twice in a week is kinda a big deal these days. But fun too.

Dog Trumpet

 

My mother is helping her younger sister move from hospital into a full care nursing home.

I’m helping to organise my mother’s 80th birthday celebrations next month (better do something about that!).

I’m obsessed with taking photos of clouds. They make me happy.

Brisbane sunset

I’m trying to build a sensory room for L, but I am wracked with indecision as to how exactly I should be going about doing this.

Baby B has the biggest, bluest eyes and a headful of luscious dark hair that goes it’s own way and looks a bit like Elvis in his younger years.

J is into dressing up – big time. He is currently wearing 2 necklaces and a medal which he puts on first thing in the morning. He loves to wear a hat and has a bit of a thing for shoes. And tattoos.

J

L is still noisemaking and screeching. There’s an unknown neighbour from a block of units a few houses away who yells out ‘shut that kid up!’

Things can get a bit crazy here. I only need to look away for a second or two and…

NOoooooooo!

But we are OK. In fact we are doing well. I’m working on my foster care zen/twigs in a stream/being in the moment and it’s OK.

OK

 

 

 

Today

It’s almost midnight in this part of the world. It was my birthday today. Just another day in a lot of ways but I am one of those people who is enjoying getting older. I don’t regret the years going by or any of the things I have done in those years. I’ve enjoyed every single one of them, even the tough ones. So I’ve had a happy, uneventful day.

I watched this clip today. My big boy will get to participate in this program next year. Get the tissues ready.

 

 

 

 

Pinchy Playgroup

On Saturday mornings we go to an ASD playgroup. It’s a small but important part of the Australian government’s program of support for children with autism and the families that care for them.

A while ago N who is 3 and neurotypical (NT) started calling it Pinchy Playgroup, because our asd boy L is a bit of a pinchy boy. Not half as pinchy as he used to be, but you know how these things go – a name like that sticks around.

It’s a lot of fun and some days (like today!) it’s just what we need. The boys get to have lots of fun and I get to hang out with some lovely parents.It’s only for a couple of hours, but it makes a nice dent in Saturday morning and the boys are beautifully tired out afterwards.

The playgroup facilitator – Sarah – is an autism mum and has kids all over the spectrum and a few step kids on there as well. Recently she commissioned some of our local aerosol artists to paint her vehicle. Now that’s a bit of autism awareness for you!

the autism awarenessmobile, outside our beautiful little playgroup venue

the autism awarenessmobile, outside our beautiful little playgroup venue

Tissues Finished Now

My boy and I had an appointment this afternoon. Yes, on a Sunday.

We went to visit Autism Queensland’s Respite home – Birralee.

It’s taken quite a while for us to get to this point. Lots of paperwork and referrals and form filling, but when I got a call during the week to say that we could take this first step and go to have a look – I was pretty excited!

From the outside it looks like a regular suburban house, but I was was very happy with all the various security measures they had in place. L had a great time exploring the house and found a couple of things that sparked his interest – tissues and a sliding door. While we were there, he would have said ‘don’t touch tissues’ or ’tissues finished now’ about 50 times (every couple of minutes!). He does like to completely unpack a box of tissues, one by one into a nice little fluffy white mountain. So I generally keep them out of his reach, but there were a couple of boxes in easy access – woooooooo! However, he was very self disciplined and managed just to TALK about them, not to touch them. I was pretty impressed by that.

He’s always been a bit of a door guy. From very early on he was interested in doors and how they opened and shut. One of the very first comprehensible things he ever said was ‘shutthedoor’ (a three word phrase, mashed into one sing-songy word). He doesn’t like an open door. It’s as though it’s untidy or unfinished, and he is compelled to close them. Then open them. Then close them…etc. So he really enjoyed doing that with the sliding door – something we don’t have at home.

He also sat down and had a lovely cup of tea and ate a muffin. So, I would say that it was a pretty darned successful introduction. Next step won’t be for another two months when he’ll get to stay there (without me) for a day. Once you are ‘on the list’ they match him with other kids on the list, so that there is a complimentary group. There’s only ever four kids at the most and two staff members. Then he/we will be offered a respite weekend once a quater. I’m notorious for my optimism, but this is looking pretty good to me. I’m excited!

tissues are finished!

tissues are finished!

 yes I know…this is two photo’s. Stop complaining!!

On the wall at Birralee

On the wall at Birralee