MAD AS HELL

I am part of a forum group called CPecial Parents. It's an internet forum for parents of children with disabilities that fall under the Cerebral Palsy spectrum, where they can go for information, emotional support, or just a good 'ole rant. Last week, the following was posted on the forum and it's important. REALLY important.

Disability Support in Australia is a NATIONAL DISGRACE.

Please read the post and if you agree and you're an Australian citizen, go to the website and take the pledge.

Hi all

http://australiansmadashell.com.au/

A few of us have developed a website to be used as a rallying point in the lead-up to this year's Federal election, for the millions of people directly affected by Australia's dysfunctional disability system.

When you combine people with disabilities of all ages and their family carers - you are talking millions of voters!

Please go to the website

http://australiansmadashell.com.au/

you may recognise some gorgeous kids), tell me what you think of it and take the Mad as Hell Pledge.

The Pledge says that you will only vote for a political party that promises to introduce a national disability insurance scheme (NDIS) and allow people with disabilities and their families to decide how to use the money to support their needs. The NDIS is the first step in funding current needs - like our kids - and planning for future disability needs. It will be a levy of about $8-$10 per week, like Medicare, NOT a new tax.

The postcode you provide in the Pledge will be aligned with Federal and State/Territory electorates, so we can tell politicians exactly how many people in their electorates have Pledged their votes to a party which commits to fix Australia's broken disability system.

Mad as Hell is a group of parents. It is not affiliated with any organisation and receives no funding.

Look forward to hearing your thoughts on the Mad as Hell campaign.

cheers
Fiona

Please feel free to pass this along.

To sleep...or not.

I can't believe that after 2 years of Ayla practically putting herself to sleep each night, a trip to Grandma's could undo it all. We have had a really good time here at my Mum and Dad's house but 7:00pm each night is not necessarily one of them.

For the first 2 years of Ayla's little life, she woke every 45 minutes ALL night. Getting her to sleep each night required a marathon of breastfeeding and leaning over the cot and patting her for at least 45 minutes to an hour, she would sleep for 45 minutes, and then wake to do it all over again. There were even nights where it was so bad and my breasts were so shrivelled and empty that I would quite literally get Ayla up in the middle of the night and put her in the bath to start her bedtime rhythm all over again. Book reading and all.

Ayla started at a Steiner playgroup from 8 weeks of age and it was there that Mummy received a good education! RHYTHM was EVERYTHING! A daily rhythm, a weekly rhythm...rhythm, rhythm, rhythm. Thanks Jen! So Ayla's 'Bedtime Rhythm' went something like this. Dinner at 5.15pm, in the bath at 6 (along with a few drops of Lavender oil), playing in the bath until Ayla was signalling that she had had enough. We would then hop out of the bath, dry off, get dressed and read a book together (Yes, even at 8 weeks of age), feed and then into bed with some very soft Lullabies by the Melbourne Symphony Orchestra. It didn't work straight away but Ayla gradually got the hang of it.

At around 2 years old Ayla was sleeping through the night and waking only once or twice for a drink of water and we were able to put her into her cot after boobie and books and walk out the door. She would play for a while, sometimes grizzle but would eventually put herself to sleep.

These days, Ayla has almost exactly the same 'Bedtime Rhythm' and she even starts telling me when it is 6:00 and time for her bath. After reading a book or two, Ayla happily gets under the covers and is asleep within minutes.....except on nights that she has clearly scheduled for the Bedroom Olympics at which time there is squealing and giggling until 10.30!

So, here at Grandma's Ayla has decided to regress despite having maintained her 'Bedtime Rhythm' and having put herself to sleep many times before at Grandma's. I wonder what has changed??

Possibly, her level of awareness of her surroundings and her interaction with everything in her environment. This time around she seems to be infinitely aware that this is a strange room, it's dark and she needs to go to sleep in Mummy's bed, with Mummy beside her. Going to sleep here involves a good 45 minutes of wedging her little feet in between my legs, sitting up and casually draping herself across my prone body and pretending to sleep, sighing, pulling my hair, sticking her fingers up my nose etc etc, all in the name of being in contact with me so that I can't leave the room. If I do leave the room before Ayla is 'ready'....hysterical crying. All of this is made MUCH worse if Grandma accidentally gives Ayla the Nut Cookies with Cocoa instead of the ones with Carob powder :).

Anyway, once asleep, Ayla remains that way until morning, even after I move her into her own bed. So, now that I have just written an entire post on Ayla's poor sleeping since being away, I have just realised that it's really not that bad. Going to sleep is presenting challenges, and challenges that I sometimes don't feel equipped for at that time of the afternoon/night but she is still sleeping through the night.

We have been doing some fun things with Grandma and Grandpa like feeding the ducks at the Botannical Gardens, swimming in Grandpa's pool, going for ice-cream, visiting the pitiful zoo but having a great time on the swings. And worth noting...in the photo Ayla is swinging on that swing all by herself with no support! It was really exciting to see her sit so comfortably on the swing, no fear or feeling of being unstable, and just enjoy swinging. Ayla thought it was hilarious when I hopped on the swing beside her and we swung along together.

Off home again on Tuesday for a few days and then back on the plane to Sydney for Ayla's ABR workshop. I can't wait til mid April when things slow down a little....until May anyway.

Ayla and the big Green Cow

Ok, I have been fighting with post for 4 days now and it's time to bite the bullet....I really wanted to share a video with you from Ayla's session from Wednesday with the Speech Pathologist and the Physio......problem is I can't seem to upload it to the blog. Ugh, technology. So, if you would like to see the video...click HERE Roundabout, I know. But, better than nothing!

At the moment, our focus is on trying to find a way for Ayla to communicate her needs to us. There are days when frustrations are high for all of us because Ayla is unable to tell us what she does and does not want. Simple things like needing something to eat, needing a drink, wanting to use the potty or being just plain BORED.

As I mentioned in an earlier post, our grand plan for Ayla is to have her competantly using an AAC device. A computerised device that allows Ayla to choose symbols or even words to help her construct thoughts, wants, needs etc and have the device output them via electronic voice output. Unfortunately, we apparently can't just jump in boots and all with the AAC. We need to start with "partner assisted communication" which involves cards with coloured pictures and use them in daily life and play to help Ayla become familiar with cause and effect. For example, if you choose the Stop or Finished symbol during play....the game stops. And when she chooses this 'accidentally', the game still stops until she chooses Go or More.

The Speechie has done really well with this and has decided to give Ayla a variety of symbols that all fit into one of two categories with similar meanings and are therefore similarly coloured. For instance, Go, More and Yes are all positives and can almost be used interchangeably. These cards are all YELLOW. Whereas, Stop, Finished and No are all negatives and are all coloured RED.

Anyway, without totally confusing you, this video shows Ayla using the Stop and Go cards in play (Riding a green rubber cow). Although I wasn't able to get a good view of the cards, you can still see that she is choosing the correct cards. Sometimes she uses her hands and other times she very clearly looks at the card she wants.

Enjoy!

Rice Pudding with Buttery Apples

I thought I would share a little Breakfast recipe before sharing all the fun and frivolity of the Insubordiknit Spinning Workshop.

I made this bowl of deliciousness last week and can't wait to make it again.

Rice Pudding with Buttery Apples

1 cup Short Grain Rice (par cook to make it quicker)
2 cups Milk (I prefer to use organic and straight from the cow)
1 tblsp Rapadura (dehydrated cane juice....or you could use raw sugar or palm sugar)
2 apples, peeled and diced roughly
splash of water
cinnamon
1 heaped dessertspoon butter (please don't use margarine.....don't even touch it with a stick!!)
drizzle of maple syrup (to taste)
crushed pecans

1. Bring milk to the boil SLOWLY. Add rice and turn down the heat so that the milk is gently bubbling. You will need to stir this quite regularly so it doesn't stick. As the rice starts to swell, the mixture will become quite thick. At this point add your Rapadura (or sugar) and stir in. The rice pudding is ready when its really thick and the rice is soft.
2. While the rice is cooking, peel and chop your apples, put them in a saucepan and add a little splash of water and ground cinnamon to taste. Place a lid on the saucepan and bring to the boil, then reduce heat and simmer the apples until soft.
3. Once the apples are soft, take them off the heat and add the butter and maple syrup. Mash the apple mixture roughly to give a rustic feel.
4. To serve, put a big serving spoon full of rice pudding in the bowl, top with buttery apples and crushed pecans. I also like to add a teeny tiny drizzle of fresh cream, yoghurt or milk over the top.

Serves (at least) 2. If you have any leftovers....just re-heat it for Brekky the next day.

YUMMO! I love this Brekky and it keeps me going until lunch time. That being said.....Ayla loathes it! She just doesn't like fruit. But that's ok...more for me :)

And now.....I need to get out of my Jamies and start my day. It's been a very lazy morning indeed.

Come in Spinner!

Steven often makes comments about me being 'Spinny'. Referring to the fact that I like to spin yarn....I'm sure there's a double meaning there too.

Last night I was plying up some yarns trying to get my bobbins free for this weekend. I have an Art Yarn Workshop on with Insubordiknit from the USA. It's all very exciting for so many different reasons. One, because it's an international workshop. Two, because it's spinning and I love it. And three, because it's for me. Just me. Not something that I enjoy doing but do to raise funds for Ayla. Not something I am doing for someone else or even to further my career (which let's be honest...has kinda gone to the dogs). This is just for me. And I can't wait.

This morning I have come out to make breakfast and found Ayla playing with one of my empty bobbins.....and Steven's comment? Oh no, another Spinny one! Oh please, please how can I make this a reality??? I would LOVE that! That's it, I have a new found drive for Ayla's ABR therapy. I really have to get her hands working.....she wants to spin! Weeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee

Change. As good as a Holiday?

This is the sort of device that we are hoping that Ayla will be able to use some day to help her with communication. Click on the picture and it will take you to another blog where you can see a similar device being used by Schuyler.


Earlier in the year, I was a little peeved to discover that the 'boundaries' had changed in our area. Boundaries meaning the areas in which we can get services from Disability Services. So from the beginning we have been part of Browns Plains....I know don't get me started. The Gold Coast is only 25 minutes away but they 'hot potatoed' us to Browns Plains which is just over an hour away.

In the 3 and a bit years we have been with Disability Services, we have had 3 Speech Pathologists and 2 Occupational Therapists. Each time we get a new one, we start all over again. They all have their own ideas, their own way of doing things and yet they all have one thing in common. In the first few weeks of working with Ayla, they all say, "Gee, she's difficult to assess, isn't she?". I am getting just a little tired of hearing this. Excuse me....People?.....She has a neuro-migrational disorder! Brain kinda does weird stuff and messages go to the wrong place....could we please do some research on the condition before 'assessing' her? No, actually she's not that difficult to assess. You just have to ask her mother some questions, do a little research and it really isn't that difficult.

Anyhow, I digress. So, we have another set of Speech, OT and now Physio because apparently we now fall into the Ipswich area....Yes, Ipswich....don't ask.

We have started again, again. Can you tell I'm happy about that. Well.....I am in some ways. Yes, I received the same ole comment of "Gee, she's hard to assess"....research please!.....but the Speechie and OT are at least Mothers. Thank you Universe!!!!! Mother's! Someone who actually wants to make things easier and more functional rather than telling me all the extra things I need to make time for in my day. The Physio is a bit intense...and young....but I have Mother's!!! Woo Hooo! Now, when I say that I really can't fit just one more thing into the schedule of things that I must do with Ayla, they completely understand and try to make it easier for me.
I guess the only thing that I'm not over the moon about is that we are starting again. Communication is THE most important thing with Ayla and each time we get a new Speechie, it puts us behind. I will say however, that our new Speechie seems to be on to it. So we're crossing our fingers.