The boy who can't fly.

The boy asks me a lot of questions that I have trouble answering. He seems to have a great interest in physics, and as I never studied physics at school, a lot of the time his questions stump me. He is really interested in gravity at the moment.

"Why is there gravity on the ground Mummy, but not in space?"

"Is there gravity in a Mummy's tummy when they have a baby in there?"

The boy went through a stage where he would scream every time I would do up his harness in his car seat.

"It's too tight Mummy! It's hurting me. You're hurting me Mummy!"

When explaining things to my kids, I make it age appropriate, but I don't sugar-coat things. There's no point, the boy always wants more information than I give. I've explained that if he doesn't wear his seatbelt, and we have an accident, he could go flying through the car windscreen.

He must have been thinking about this for a while. I was informed this afternoon that:

"If I don't wear my seatbelt, I won't go flying through the windscreen Mummy".

"Why is that boy-o?"


"I don't have wings, and there's gravity, so I CAN'T fly."

It's hard to argue with a literal thinker, even if they are only five.

The one where I ask for help - LEARN

I'm not usually one to ask for help, but this is a cause very dear to my heart.

Last week I wrote about the LEARN centre having to close its doors and stop services for children with Autism Spectrum Disorder due to lack of financial aid from the WA state government. Children including my son who was due to start at the centre last Friday. The state government said that the children using LEARN's services would be placed with other therapy providers by Thursday last week. This has not happened. Our children who need stability and routine have suddenly had their therapy stopped, and are hanging in limbo.

The parents of children who have been receiving therapy from LEARN have formed a committee to try and have LEARN reopened. We are campaigning the state disability minister, Helen Morton and our local MPs to provide financial support and cut the red tape.

In order for LEARN to reopen, we need to raise $300 000 by Friday 25th May, as in the end of this week. If you are able to contribute even a small amount, it would be greatly appreciated. Below is the committee's media release with details on how to contact the committee for information as well as how to donate to our cause.

MEDIA STATEMENT

Parents unite in desperate bid to keep

doors open for the LEARN Centre

Monday 21^st May 2012

The Parents of the embattled LEARN autism centre in East Fremantle have joined forces in a desperate bid to raise the money needed to keep the centre’s doors open.

Some high profile individuals and organisations have pledged some funds but the parent group are in a race against time to try to raise $300,000 by Friday 25^th May. 

The  $300,000 would mean accumulated costs  could be met and the company could re-open its doors and continue to provide services to the 35 children currently accessing LEARN’s program. 

Parent Spokesman Simon Lewis said it is heartbreaking to see the doors of the centre closed and a ‘for lease’ sign already on the East Fremantle building.

“This is all about the getting the children and their families back into the specialised therapy needed to conquer their Autism.  The reality is that there are no places for our children in other treatment programs in WA, and unless we rally they will miss out all together.”

“We are asking for public support to help us raise the funds because we only have four days to keep the doors of LEARN open” said Mr Lewis.

Mr Lewis said the parents have set up a fighting fund to which people can pledge donations.

The  Administrator will manage all donations which can be made at NAB, Simon Coad Trust Account, BSB 086 164, AC 54365 0835.

Mr Lewis said the parents’ group is hoping time will not run out to secure a better future for their children.

The parent group said it is still talking to the State Government and is hopeful of a postive outcome.

MEDIA CONTACT

Simon Lewis -  0432064100

openthedoorsoflearn@gmail.com

If you feel like writing to Helen Morton, the disabilities minister to champion our cause for financial support for the LEARN centre, you can email her at the following addresses:

minister.morton@dpc.wa.gov.au or helen.morton@mp.wa.gov.au

If you are able to support LEARN in any way, whether it be through a donation, or emailing Helen Morton,  or your local MP if you are a WA resident, it would be greatly appreciated.

Thank you.

It's my birthday and I'm pissed.

Warning: This post contains profanities.

Today is my birthday, and it's also my blog's second birthday. Now normally I'm a fairly optimistic person. I still get a bit of that excitement you have as a kid, waking up knowing you're a year older. Not today, I couldn't give two fucks about the fact that I am a year older. Instead I'm pissed off for my son, and for around 35 other Perth families who have children with ASD.

Last month, I wrote about how we had finally moved up the waiting lists, and that the LEARN organisation had a spot for the boy to begin ABA therapy. We met with the director at the centre, and felt it was the right place for the boy. The centre completes an in-depth assessment of your child's development in order to develop an individualised program for your child. The assessment can take up to 20 hours. The boy was due to have his first assessment session was too sick, so we postponed until this Friday.

By sick, I mean that he spent 4 days sleeping 18 - 20 hours a day, not eating, regressing to almost non-verbal, and back into nappies full time. A second trip to the doctor brought antibiotics, and a huge improvement in his health. He's still unwell, he's still in nappies, but he's eating small amounts and talking. he even snuck off to make me a birthday present yesterday afternoon.

Last night I saw this news clip: Autism Centre closes it's doors. It was straight onto google to find out the deal. I found these radio interviews: Interview with LEARN organisation director and Minister tries to cover up her governmentst's red tape by blaming the LEARN centre for not jumping through invisible hoops. Both audio clips have two interviews that are worth listening to. Basically, the LEARN centre's board has been trying to organise a meeting with the disability services minister for the last nine months to request funding to assist running the centre. All attempts at making an appointment were ignored until a newspaper ran the story. The LEAN centre was granted a last minute, 30 minute appointment, where the disabilities services minister said they wouldn't provide funding because the LEARN centre didn't have pre-qualification for funding. The reason they don't have pre-qualification? Because applications for pre-qualification are not being accepted until the new financial year. A bucket of money was allocated last year to help charities that support disabilities, but no-one has been able to apply. Making people jump through fucking hoops that are hidden.

Now from my understanding, the LEARN centre is $250k in debt. Not really that much. The state government's solution? Send the 35 kids currently utilising the LEARN centre's services to other service providers, and the government will give the other providers $10k for each of these kids. The majority of these families have come to the LEARN centre after trying the other services and finding that they were not the right places for their children. Now, if my brain is working properly, the government is willing to give out $350k, which would more than cover LEARN's debt, but they won't give it to LEARN, they'll give it to other services who can't provide what LEARN provides.

I can tell you that on my birthday, there other things I'd rather being doing than worrying about where I am going to access such high level ABA therapy for my son, and worrying about how long we're going to be on waiting lists for. I haven't felt this fucked off in a long time.

I can tell you which assholes I won't be voting for at the next election.

Candles

I've been burning the candle at both ends this week. Not socialising unfortunately. Trying to get into a routine now that the Sailor is off, doing sailor-y things. Trying to keep on top of the house work, and the washing. Oh My God, the washing! I normally wash it, he puts it away. I hate putting away.

Then there's uni. Half way through the semester, but exams are approaching faster than you can say WTFBBQ?! I thought I had a break with assignments, but I must have had my head in the clouds. So there have been many late nights here this week.

I had a plan, I had a list (I have many lists) for this weekend. I was going to knock two assignments out of the way, do this weeks pre-reading AND the study questions for all four of my units. The weekend is halfway over, and I need a new list.

I've done one assignment. Fuck.

I've gardened, rescued my favourite sheets from the rain, I've cleaned the floors, put away two overflowing baskets of clean washing, and given Mopsy a clean bed.

Mopsy

Yes her carrot is cut up. So what? It was leftover's from the boy's lunch box. But who doesn't cut up carrots for their bunny?

I was going to hit the books again after the kids went to bed. They were still awake 1.5 hours after I tucked them in. I shuffled furniture around in the lounge room. I re-mopped the floors. I voted in the Kidspot Top 50 Bloggers. I hit the wall. I realised that my brain is trying to tell me I need a break from studying. Really? No!

I'm switched on today.

I made a chai latte,

grabbed the book (trying to) I'm reading and dug out the candle I won at my sister's hen's weekend back in February.

And realised I have no firetrucking matches.

But as I sat down to write this, a repeat of the season return of Offspring appeared on telly. All is right with the world. Study can wait.

Lusting after Nina's wardrobe and drooling over Dr Patrick? Who needs a uni degree anyway?

Snowballing

Have you ever noticed that sometimes your life seems to stall, or aspects of it anyway, and then suddenly, the ball starts rolling again. Full speed,j like a snowball down a hill. Ha ha, pun intended.

When Bikeboy was diagnosed with PDD-NOS almost two years ago, the services in Darwin at the time were quite limited, but we didn't have to wait to get BB into the service the Husband and I thought would best meet his needs. BB's ABA therapist was instrumental in bringing about so many positive gains. Not just for BB, but for our family as a whole.

At the time of his diagnosis, the private paediatrician practice wasn't taking on any new clients, even though one of them is known as the paediatrician to see if you live in Darwin and your child has been diagnosed with ASD. Even though the books were closed, we got in.

School-wise, we considered a variety  of schools to send BB to for preschool. We ended up sending him to our local public school, the one he would have to be accepted into because we fell in its catchment area. Again, we were extremely lucky, and BB's teacher and the teacher's aide were wonderfully supportive, inclusive, caring, and they were just as invested in BB reaching his potential as we were. In fact all the teachers and staff at the school that had anything to do with him had the same attitude. They wanted the best for him.

Then we moved interstate.

Getting school sorted was fairly easy. Pre-primary (Transition in the NT, Kindergarten in NSW, and I believe Prep for the other states and territories) is not compulsory in WA, and once a public school has reached it's intake limit, they don't have to accept you, even if you live in the catchment area. To add to the stress of finding a spot in a school, you can only apply at one school for Pre-primary. So once we knew where we would be living, I started calling the public schools in our suburb. There are three. The first didn't have spots. The second one I rang, did have spots, and ended up being the closest to where we live. So we enrolled BB, and it was all sorted. Public schools are great right? Right. I'm going to post about the school another time.

Transferring BB's FaHCSIA funding from Autism NT to the Autism Association of WA took a bit longer than I hoped. This meant waiting longer than I wanted to contact service providers. This posting has meant quite a significant decrease in our financial status, so we haven't been in a position to pay privately for therapy. The transfer came through, I made some phone calls, and BB was put on waiting lists.

BB's paediatrician in Darwin referred us on to a new paediatrician in WA, but every time I tried calling, the phone would ring out. Eventually someone answered, only to tell me I had the wrong number. So I called the old paediatrician, and was told that the new one was setting up a new office, and would call me once they were set up. So I gave them a few weeks, and still nada. So I rang the old paediatrician again. Give them a week, and if you still haven't heard anything, call us back. I was starting to think this new doctor didn't exist. I was preparing to find a doctor myself, and then ask for a referral. But surprisingly, the new paediatrician rang. They weren't opening until the following week, but we got straight in to see her.

I'm glad we waited. The reason it took so long to get a hold of the doctor? Just that she'd been volunteering overseas for the last five years, and had just returned to Australia a few weeks prior to our appointment. She spent close to an hour talking to me, and talking to BB. She  told us what she is going to do for us: contact the disability service, contacting the education department to ensure BB is getting the support aide time he needs, and setting up (and attending) a meeting with his school so they understand what he needs coming from a professional rather than a parental perspective. I like her.

About the same time we got the call from the paediatrician, the Sailor got crashed posted back to sea. This means were back in the position of being able to pay privately for BB's therapy once we exhaust our FaHCSIA funding (which really won't be that long). It also means that the Sailor leaves on deployment on Thursday. Yep, as in tomorrow. Head still planted firmly in sand. Five months will fly, right?

Today, I have an appointment with the Autism Association. Just a meet a greet, and to discuss our plans for BB when it comes to accessing services. Yesterday, I had a phone call from the LEARN centre who had put BB on their wait list for ABA therapy. They have a few openings, and BB has moved up the list to the top. We're going in to have a look around the centre on Friday, but I'm fairly certain we are going to accept the spot they have for BB. My gut tells me this will be a good place for BB., that it's been worth the wait.



Snowballing. We're doing it.

Easter Gifts

The Husband and I were talking about buying the boy and girl lego for easter, rather than chocolate. The Husband was meant to be buying lego tonight, but he couldn't remember which lego I said, and my phone was on silent. He came home as I was catching up on Edenland's blog.

The beautiful Eden is in Niger at the moment with World Vision. She's blogging about her experience, the people, what she sees. This post got me, as I know it has a huge number of Eden's readers.

The photos of Zenouba's legs and feet are just heart breaking. No child should have to suffer like that. Sometimes, I think we (myself included) forget that we are all citizens of earth. We have a duty to look after our fellow humans, our fellow children. We so often hear that it takes a community, a village, to raise a child. The villages, the communities of third world countries do not have the money to raise their children. The world community needs to step in, and help raise the world's children.

Instead of buying our children chocolate or lego for Easter, we've sponsored a 5 year old boy in Zimbabwe. The same age as Bikeboy. Rather than spending money on material items, our money is going to feed this boy, send him to school, help feed his family, provide them with clean water, and provide access to healthcare. Our children are going to learn about how lucky they are, and how little it costs to help someone in need. My husband I are going to learn how lucky we are.

You'll be seeing the World Vision badge in my sidebar. Please go and have a look. Look at the faces of the children waiting for sponsorship. So many faces. So many beautiful, innocent faces.

Flash Mob

In the theme of Autism Awareness Month, I want to share this video I found on Facebook today.

I think it is full of the awesome. It made me smile, and made me a little teary to see all those people out there in support of Autism awareness.

Enjoy!