Fighting for the NDIS (national disability insurance scheme)
Published 1 May, 2012 | 
Today I took another major step out of my comfort zone and spoke up at our states public rally to show how much we need the NDIS. I spoke along side the Premier, federal ministers, councilors, and those living with a disability.
It was an honor to be asked but the pressure was immense as I felt I had a duty to not only my precious girl but to all those other kids and parents out there who are starting out on this path of having a child with additional needs. Who are desperate for early intervention and struggling to get what their child needs, like I am struggling for Willow.
I hope that by sharing just a small part of our story that people will understand what an uphill battle we all face. I certainly shed a lot of tears after with other parents who I’d never met who came up and thanked me for sharing my story and then I had the honor of them feeling comfortable to share theirs with me
And this is my speech for those of you who couldn’t be there 
Hi everyone
My name is Sallyanne McShane and I’m a single mum to three gorgeous girls. My youngest willow is 3.5 and she has been battling and I have been fighting for her since before she was even born. She has Turners Syndrome; only 2% of babies with TS make it to a live birth. On top of Missing a chromosome and having a form of dwarfism, willow has been dealt many other cards to deal with. She has Iga depletion, so she’s missing a major part of her immune system and it’s untreatable. She has Celicas, multiple food intollences, hypertonia, peti mal seizures, Sensory Processing disorder, Autism and on top of all that she is practically non-verbal.
I have been on this path of parenting a special needs child for a relatively short time. But in that time I have learnt that the system is hopelessly complicated
Some things are provided by the councils, some by the Federal government, the State government or by charities. And all this has to be navigated and understood whilst in a state of distress and in many cases sleep deprivation.
Then you have to do research better than an FBI agent to actually find out about these services and funding. If it wasn’t for meeting another wonderful mum at 2am one night in the children’s ward who friended me and introduced me to a network of other parents on this path through the MyTime group I would probably still be in the dark about these services.
There is no time to actually deal with the emotions involved with the fact your child has a disability as your too busy fighting for the basics
And THIS is what the national disability insurance scheme is about. It’s about making things easy. Making it flow rather than being a battle.
Willow hasn’t been entitled to any funding as she didn’t have one of the six acceptal diagnoses. Even though she has desperately needed speech and occupational Therapy and much more.
So when she recently got her diagnoses of Autism I was devastated, firstly because my child has this on top of everything else she has to deal with. But also because the system we currently have made me feel happy my child has autism, as now she gets funding. No parent should ever have to feel grateful for getting bad news .
EVERY SINGLE CHILD THAT NEEDS EARLY INTERVENTION SHOULD GET EARLY INTERVENTION REGARDLESS OF DIAGNOSES!!!!!!!!!!!!
Now I am grateful for the $12000 in funding I now have for early intervention but then I did the maths.
Studies show that 25-40 hours of therapy a week has a significant impact on the outcome of those with Autism.
If I just get Willow one hour of Speech and one of OT a week I’m already over $16000 in one year.
I only have $12000 to last till she’s 7!!!! And then what happens when she needs more therapy or has more needs that crop up down the track
Willow as I mentioned before is almost non-verbal, I’ve been told she needs a communication devise we have been looking into it and she’s doing awesome with the lead up and has gone from keyword sign to being able to do 3-4 word sentences. Yes proud mummy moment having my daughter communicated with me. Instead of just signing Ball, she can now tell me to catch the ball, of that she wants to throw the ball or even she wants to throw the ball high. What a wonderful amazing day that was.
Then comes the kick in the guts, the devise is $8000 and I will have to fundraise for most of that!!!
I’m not alone in this, I’ve helped other parents with fundraising and herd countless other stories of people fundraising for communication and mobility devises.
why the hell do we have to fundraise for, to fight for our kids basic human rights of communication and mobility!!!!
Willow is only 3.5, I know many of you have been on this path a lot longer then us. But already I’m exhausted. I have to constantly fight for every little thing.
No two children with a disability are the same. If delivered at the right time services such as speech therapy, occupational therapy, Pysio therapy and specialised equipment such as mobility aides and communication devises can dramatically improve learning and social out comes for our kids
The NDIS would ensure our kids receive targeted support and adequate early intervention tailored to their unique needs rather than just their label.
I shouldn’t be here today fighting for our children’s basic human rights of mobility and communication
We need the NDIS so I can stop battling and start mothering!!!
Thankyou
Pain in the Arse, or alternative title, To busy for pain
Published 17 April, 2012 | You know you’ve been busy when things come to light like they did today.
A couple of weeks ago I had a bit of a pain in the middle of the back of my thigh, it happens. Now over this last week I have had numbness spreading up into my Glut. Annoying yes, but I’d only really notice when I had a spare minute. The pain in my leg has been waking me up at night but during the day I forget about it.
Yesterday the numbness spread all the way down to my heal so I thought i should get it checked as it was a bit scary as this is all the same leg I have a growth in which I have to have removed and biopsied but I haven’t found the time as yet.
Today I went to the dr and he can’t believe I’m walking!!
Apparently I’ve pulled my hamstring badly, I said its not that bad, but when he touched it I almost hit the ceiling. He asked me how I did it, I have no idea I told him. He just couldn’t believe someone could have this injury and not notice it happening. Look I could’ve at the time but then, Will would have had a melt down, or we were rushing to an appointment and I would’ve forgotten. It amazing how when we are busy, well beyond busy really, we disconnect from our bodies, that’s how we keep going through the tiredness I think.
On top of that I’ve pinched my sciatic nerve which is the numb feeling, so that’s a weight off. Oh and my back is stuffed.
He recommended physio, well that’s not going to happen and strict no lifting children rule.
Bwhahahaha
I have a child that gets tired super easy, and freaks out constantly. Not only do I have to carry her I have to carry her kicking and screaming, whilst pushing a trolley and trying to get day to day stuff done.
He has urged me to use the accessibility permit I have for willow so I can get her out of the car easier and not carry her as far. Also he has written a letter to her OT asking for a more suitable pram for willow so I’m not leaning over the crappy little stroller we have which is very hard to push with a flailing child in it. Which would be brillent.
So a few hot water bottles on the back and leg and let’s hope for the best xx
I will leave you with a lovely picture of Willow and I which I thinks shows how much every little ache and pain is worth it for her
Why I’m planting what I’m planting
Published 15 April, 2012 | I thought I would explain some of the choices I’m making in the garden and why I’m planting some of the fruit and Veges. These are just a couple of choices to show the health benefits of some individual fruits. In addition to this there is HUGE benefits to not just organic produce but fresh produce. Fruit and Veges for sale in supermarkets can be over 6months old keep in storage surely produce picked fresh from the garden would have far more nutritional benefits and then organic food just has so much more to offer.
FEIJOA 
This Feijoa fruit is also called Pineapple Guava or just Guavasteen. Feijoa fruit is very good and healthy for people because in about a cup of this pureed fruit you can get these nutrients:
- Vitamin B1, Thiamin
- Vitamin B2, Riboflavin
- Vitamin B3, Niacin
- Vitamin B5, Pantothenic Acid
- Vitamin B6, Pyridoxine
- Vitamin B9, Folate (good amount)
- Vitamin C (large amount)
- Calcium
- Iron
- Magnesium
- Phosphorus
- Zinc
- Copper
- Manganese
- Protein
RHUBARB
Rhubarb contains some vital phyto-nutrients such as dietary fiber, poly-phenolic anti-oxidants, minerals, and vitamins. Further, its petioles contain no saturated fats or cholesterol.
The stalks are rich in several B-complex vitamins such as folates, riboflavin, niacin, vitamin B-6 (pyridoxine), thiamin, and pantothenic acid.
Red color stalks contain more vitamin-A than green varieties. Further, the stalks also contain small amounts of poly-phenolic flavonoid compounds like ß-carotene, zeaxanthin, and lutein. These compounds convert to vitamin A inside the body and deliver same protective effects of vitamin A on the body. Vitamin A is a powerful natural anti-oxidant and is required by body for maintaining the integrity of skin and mucus membranes. This is something I find very important for Willow as her iga depletion affects her mucous membranes.
Like in other greens like kale, spinach; rhubarb stalks also provide good amounts of vitamin-K; 100 g of fresh stalks provide 29.3 µg or about 24% of daily recommended intake. Vitamin K has potential role in bone health which is also important to someone with dwarfism
Its stalks also contain healthy levels of minerals like iron, copper, calcium, potassium, and phosphorus.
BLUEBERRY
After many years of research on blueberry antioxidants and their potential benefits for the nervous system and for brain health.
New studies make it clear that we can freeze blueberries without doing damage to their delicate anthocyanin antioxidants. These findings are great news for anyone who grows, buys, or picks fresh berries in season and wants to enjoy them year round.
Berries in general clearly have a favorable impact on blood sugar regulation which is something we keep an eye on with Will
A recent study has shown that organically grown blueberries turned out to have significantly higher concentrations of total phenol antioxidants and total anthocyanin antioxidants than conventionally grown blueberries, as well as significantly higher total antioxidant capacity. Numerous specific antioxidant anthocyanins were measured in the study, including delphinidins, malvidins, and petunidins. So I have to work hard to grow more than the 6 berries I harvested last year a few more plants is in order
ALMONDS
In addition to healthy fats and vitamin E, a quarter-cup of almonds contains almost 99 mg of magnesium (that’s 24.7% of the daily value for this important mineral), plus 257 mg of potassium.
Magnesium is Nature’s own calcium channel blocker. When there is enough magnesium around, veins and arteries breathe a sigh of relief and relax, which lessens resistance and improves the flow of blood, oxygen and nutrients throughout the body. Studies show that a deficiency of magnesium is not only associated with heart attack but that immediately following a heart attack, lack of sufficient magnesium promotes free radical injury to the heart. Willow has hypercalicima and also Turners comes with high risk of heart complications.
Potassium, an important electrolyte involved in nerve transmission and the contraction of all muscles including the heart, is another mineral that is essential for maintaining normal blood pressure and heart function. Almonds promote your cardiovascular health by providing 257 mg of potassium and only 0.3 mg of sodium, making almonds an especially good choice to in protecting against high blood pressure and atherosclerosis.
An amazingly productive day
Published 15 April, 2012 | An amazingly productive day…
Went to the tipshop with a list of 6 things I was going to start hunting for and there was 5 of them there, I couldn’t of dreamt of better fitting items and got them all for a steal and when I was asking about the last thing another customer told we where she had seen them
I was blessed by the upcycling angel today <3
Then off to try and buy feijoas for the front hedge not luck but…
I found some awesome other plants, a chilean guava which can go in the hedge. A persimmon and a couple of chillies which I was just reading how well they grow in Tassie. Plus I go some diakon, radish, carrots, white, brown and red onions. Some herbs and some cinerias to top things off. Plus there was a miracle, what was that miracle you ask?
I even managed to get them all planted
New therapist, new hope…
Published 27 March, 2012 | Well yet another new speech therapist today, we’ve never had the same one for more than two appointments in a row at St Giles. That being said we only had a handful of appointments last year anyway.
It’s always this sense of excitement and dread with a new therapist. Will they be able to help? Will they have some new ideas? Will they have met someone like Will before? or will they be hopeless??
Well today was a score!!!
She was enthusiastic, fascinated by Willow, honest about she’s never seen anything like this before but loves a challenge and I could tell she ment it. She kept commenting that she’d love to give me some answers or advice right now but really needs to do more assessment and have a really good think about this. She assured me she use to work on complex cases back in the UK and we will work together to get to the bottom of this and give Willow some more communication. She talked about many various communication methods and you could see her mind ticking over. She talked about various people she will ask for advice and ideas.
I love how she picked willows intelligence and Will even tried to have a conversation with her.
Yet again I walked away with a renewed sense of hope that someone might unwrap at least a part of this puzzle called Willow