The Story the Human Rights Commission Didn't Want to Hear

Well, it has been a long time since I posted anything here. Lets be straight up and call it what it is. Laziness! But it is time I wrote. And it is time this message got out there.

4 weeks ago, after a huge battle, we finally got our Permanent Residency. We had to apply for a Medical Waiver for our Australian born daughter because, well, quite frankly, this country does not want disabled kids. They made us get a whole stack of paper work, which they sent off to the Health Department for an estimate of her lifetime costs. They came up with the magical figure of $640,000. Then contacted us to say that her costs were too high. If they had been $500,000 or less, they would have granted the waiver. We were given the opportunity (interesting wording, like they were being super generous) to appeal this by providing "compelling" reasons why a waiver should still be given on "compassionate" grounds. So we pointed out that as a NZ descendant, she was already entitled to Medicare and Special Schooling. And that all the money they had assigned to her care as an adult, would apply regardless, as she would become an Australian Citizen at 10 anyway. So they granted the visa. It comes with a stipulation that Michael has to keep working at his job for another 2 years.

Sadly the opportunity to even apply for a Medical Waiver has been removed. Anyone else in our situation is unable to qualify. I vowed I would never forget this situation. That I would not forget there were thousands of other Kiwis stuck in this never-never land. And now, I have been given the opportunity to speak up. And I would like to invite allow you to as well, by joining Oz Kiwi on Facebook, and by signing this survey. And check this out - a comparison chart for Kiwis in Aussie vs Aussies in NZ.


I have also started a FB page for Kiwis with Special Needs Kids - Special Little Kiwis in Oz. The aim of this group is to support each other in any way we can, including by having a library database of special needs equipment available for loan. The group is open to anyone who supports our cause.

Last week I found this website where people can share their human rights story, and in the case of children, have them sent to the Children's Commissioner. I sent in Samaras story. But they never published it. In fact there is not one single story on the plight of the New Zealanders living in Australia. Not one. It appears that our Human Rights don't even extend to having a voice in the one place where our stories are begging to be told! In fact, when it comes to Human Rights, can you believe that the Department of Communities (the umbrella that Disability Services comes under - yes, the ones that kicked Samara off for not being a citizen) is changing the legal definition of
discrimination so they can continue to discriminate against Kiwis?!  Seriously?! How can that even be legal for a first world country?!

Anyway, they may not have wanted to publish Samara's story, but I can. So here it is...

Rejected by my Country
By Samara Lamb-Miller (with lots of help from my mummy)

My name is Samara. I am almost a big 5 year old. I don't have many words, and the ones I do have are about fun things like food, and animals and The Wiggles. So I am getting my mummy to write this for me. She's used to fighting for me, so she knows about stuff that I don't, and you probably don't either. I guess it is hard to know everything so people just know about what happens to them and people they know. So I am hoping by getting to know me, you will understand just how hard my life has been. My story starts more than a year before I was born. My mummy and daddy and 5 of my 6 big sisters, came to live in Australia. They are from New Zealand, which is a really cold place I went to a couple of times for a holiday. Anyway, I am the only kid in my family who was Made in Australia. I guess that makes me pretty special, huh? Anyway, I was born 9 weeks early. When I was 4 weeks old, the drs told my mum and dad that I had an extra chromosome. You would think that there being more of me would be a good thing. But there are some people that don't agree. Because, next thing I know, my country doesn't want me. Being born here wasn't enough to make me an Australian. Even though it probably was for you. So instead, my family had to become Permanent Residents. Which is weird. Cos I thought they were since they are residents who live here permanently. I guess people with only 46 chromosomes don't get stuff like that. So, as it turned out, they weren't allowed to get their Visa (which is a piece of paper from the government, not a card to buy stuff with), because my country doesn't want me. They think I will cost them lots. But I don't see how. I won't cause a drunk driving crash. I won't take up space in a prison. I will always be good to others. Isn't that a good thing? I don't understand. I am a nice person. What did I do wrong? Well, lucky for me, my mummy loves me so much, that she decided to fight for me to get my Permanent Residency. And lucky for my mum, there was this thing called a Medical Waiver that she could apply for. Not so lucky was it cost us lots and lots of money, and we had to shift a long long way from home, and from my drs and from my school. It took a long time, but we finally got our Permanent Residency a few weeks ago. And that's good. Cos now I can get therapy which will help me to learn stuff and to be able to do heaps of things myself. It will help me even when I am all grown up! And I can get a special car seat so I don't die in a car crash (those things are way to expensive for mums and dads to buy without help). But I am still sad. And that is because some of my friends didnt get lucky. Their mummy's and daddy's can't get Permanent Residency. Because now, all kids with disabilities, and their families get told no. They can't get a Medical Waiver. Even if they were born here. How can that be fair? Why doesn't this country want to help them? Mum says it is cos they have no rights. But I thought all humans were supposed to have rights. Especially kids. Especially disabled kids. She said Australia has signed stuff like the International Convention on the Rights of the Child that says we should be treated equally. So maybe the people who made the rules don't know that. Cos I wasn't treated equally. And my friends might never get get treated equally. And that makes me really really sad. Please can you do something to help them? Just cos of where they come from, or where their parents come from shouldn't make it ok to not help them. We are all just innocent kids. How can it be ok to make their lives even harder than it already is. Some of them are really sick. Some of them might even die before they are old enough to be called Australian. Since your job is to help kids, please help those who need it most.

Beauracracy at it's Finest

Todays post is way off on a tangent from disability issues, but seems to me to be completely in line with the politics behind the immigration issues we are facing.

15 days ago our town was flooded. Again. For the 3rd time in less than 2 years. 2 of those times it broke all previous records. Some people haven't been back in their homes long, and now they are homeless again.

We were evacuated and lost a few things (the worst being our van which isn't insured) but overall we got off very lightly. Our house is a highset (built up on stilts basically). So our living areas were spared. And, we were well looked after while we were out of our house. We had forgotten to grab Samara's oxygen concentrator, so the hospital lent us one. A couple of hours later, we were told that an organisation was paying for us to stay in a motel rather than the evacuation centre due to Samara's health issues. They didn't even care that we are not Australians!!

In the first week post flood, I got to take part in a wonderful group that was set up by a local resident. We baked (well, I didn't - but over a hundred people did), made sandwiches and cooled hundreds of bottles of water. We then organized volunteers to deliver them to every flood affected house in town. Twice. Every day. Morning tea, and lunch. It was an amazing community effort, that meant those cleaning their homes out could take 5 mi utes out of their day to refuel and avoid dehydration in the Queensland heat.

Sounds great, huh? We all thought so. As did the 1000+ people who we fed. But Disaster Management were not convinced. After just 3 days, we were told we needed to stop. Why? We're we breaking health laws? No. We were checked every day for that one. Was the demand gone? No. In fact it was still increasing at that stage as people made their way back to their homes for the first time. Unbelievably, we were told to stop because it was time people got back on their feet and started supporting the local economy by buying their own food! Seriously! Now, we were buying our ingredients locally, so how was us stopping going to help the economy anyway? I can answer that. Flood victims did not have power back on yet. They did not have sanitary kitchens to prepare food in. They did not have the time to cook, even if they did have the means. No, our free labour meant the locals were not wasting their money on fast food and cafe's. Places they would not have been eating under normal circumstances anyway. Thankfully the local Lions Club took us under their wings (do lions have wings? Manes maybe?). Anyway, they let us operate from their premises and under their insurance. We were able to continue feeding people for the rest of the week.

Then, this last week I started concentrating my efforts on helping at the flood donation centre. And can you believe they are being told to close down and not give things away cos it hurts the local economy when all the victims are not having to shop for replacement items. Like, as if half the population of our town had been planning on replacing all their household goods just 2 weeks ago anyway! If people weren't going to be lining up two weeks ago to get new toasters, then they haven't really lost any business have they? What they are losing by us running a donation centre is the opportunity to profit from a disaster.

I would love to know where the officials who decree these things are when local landlords are raising their rents to new tenants to horrific all-time highs, just because there is a shortage of housing....

I love Australia. I love the people. I am glad we moved here. But when it comes to politics, I am honestly baffled and saddened beyond belief.

A Life Worth Living? Apparently Not.

Today I was saddened, sickened and disgusted to read the story of little Amelia. At just under 3 years of age, her doctor at Children's Hospital of Philadelphia has deemed her life as unworthy. Why? Because she has been deemed unfit for a much needed kidney transplant. Not medically unfit, mind you. Intellectually unfit. That's right. Because young Amelia has Wolfhirschhorn Syndrome. A genetic disorder that has left her with an intellectual impairment. Or, as her doctor so lovingly put it "mental retardation".

What gives ANYONE the right to put a value on someone's life? Much less, to exercise their power to bring that life to an end, against her parents wishes, just because they can? Further, this family isn't even asking to go on a donor waiting list, they are lining up to be tested and donate their own kidneys. Not that this should be an issue either. After all, even with the donor lists, what makes one persons life more worthy of being saved than another's?

And, can you believe, that this doctor had the audacity to tell her parents that “I have been warned about you. About how involved you and your famliy are with Amelia.” I beg your pardon? Warned about parental involvement? Now that really got my hackles up! Shouldn't we be more concerned about parents who are NOT involved in their children's care?

Be sure to head over to CHOP's Facebook page and add your voice to the thousands there who are letting them know just what we think! http://www.facebook.com/ChildrensHospitalofPhiladelphia

Then head over to http://www.change.org/petitions/childrens-hospital-of-philadelphia-allow-the-kidney-transplant-amelia-needs-to-survive# and sign the petition to get Amelia the surgery she needs and deserves.

Here is my post from their Facebook page:

I am mentally retarded. Compared to the likes of Einstein, my IQ counts for not a lot. Of course, even Einstein's teacher labelled him as intellectually inferior. I guess if he had needed surgery at CHOP he would have been denied too! Out of curiosity, at what level is someone deemed unworthy? Presumably, my level of "retardation" isn't as pronounced as my daughters (who has Down Syndrome), but, from the evidence I have seen, it is not as pronounced as this doctor's, this social worker's, or this hospital's either. So, I am still left wondering what the magic number is that makes one person's intelligence more worthy than another's.

What is discrimination anyway?

Today THE letter arrived. The one that tells us Samara isn't eligible for disability services because her parents weren't born in Australia. It says that under the Disabilities Act 2006 she is excluded as she is not a citizen or a Permanent Resident.

So I skimmed my way through 325 pages of BORING legislation. I did not find a single clause that mentions her immigration status as exempting her. So I rang Disability Services, and asked them where in the Act does it exclude her. They couldn't tell me. But they did say she isn't being discriminated against because of her disability. That all children of non-Permanent Residency or Citizenship holders are born without citizenship in this country. Therefore it is not discrimination.

I disagreed with her, but had to think about it a bit once I was off the phone to formulate why it was discrimination. These are my thoughts on the matter....(aside from my pet peeve that says that we were in the country legally, we were living here legally, paying the same taxes as everyone else, yet our daughter is not a citizen. I think that stinks no matter who you are!)

Any "normal" child born in Australia to New Zealand parents, who is not a citizen by virtue of birth can still access the following (I am limiting this to the age of 10 when citizenship becomes automatic for these children):
Free state schooling
Free kindergarten
Creche rebates
Free health checks
Free (or subsidised) healthcare
Family Tax Benefit
Large Family Supplement (where applicable)
Educational Tax Rebate.

Any "normal" child born in Australia with full citizenship can access the following:
Free state schooling
Free kindergarten
Creche rebates
Free health checks
Free (or subsidised) healthcare
Family Tax Benefit
Large Family Supplement (where applicable)
Educational Tax Rebate.

Any "disabled" child born in Australia to New Zealand parents, who is not a citizen by virtue of birth can still access the following:
Free state schooling
Free kindergarten
Creche rebates
Free health checks
Free (or subsidised) healthcare
Family Tax Benefit
Large Family Supplement (where applicable)
Educational Tax Rebate.

Any "disabled" child born in Australia with full citizenship can access the following:
Free state schooling
Free kindergarten
Creche rebates
Free health checks
Free (or subsidised) healthcare
Family Tax Benefit
Large Family Supplement (where applicable)
Educational Tax Rebate.
Disability Services (funding and therapy)
Lifeline Funding (for equipment etc to help families with disabled children - charity, but must be enrolled with Disability Services)
Carer Payment
Carer Allowance
Better Start Funding (for a set of prescribed disabilities, which Samara falls into 2 of - provides funding for therapy treatments)
Companion Card (allows one Carer to get into certain places (theme parks etc) for free)
Health Care Card (reduces prescription costs of those with high health needs)
Tax Rebate of $600 per year in addition to all other funding
There are more, but that's what I can think of off the top of my head.

Hmmmmm, I would say, looking at that, that it IS discrimination. "Normal" kids born here without Permanent Residency Visas get the same services as "normal" kids born here with full citizenship.

Disabled kids born here without Permanent Residency Visas get WAY less services than disabled kids born here with full citizenship.

I have been to both the state and federal MP's regarding this. Next I will be going to the media. If I have to, I will go as far as international law.

It is discrimination. And it is wrong!

Samara, and others like her, were born in Australia. They deserve to be treated equally. Only the disabled children are really being disadvantaged by this policy. It is time someone stood up and said NO MORE. We are in the process of getting our Visa (one we have to fight for, as Samara's disability is an automatic no, normally). Hopefully in a few months, this will all be in the past for us.

But we are not the only ones. I will not give up the fight just because it won't directly affect us any more. This is not just about our family. It is not just about Samara. It is about basic human rights that are being denied the children who need them the most.

When Discrimination is an Officially Sanctioned Policy

As we approach Samara's 3rd birthday (this Friday), we have had another week of tears surrounding Samara's diagnosis. Not because she has Down Syndrome. Not because she is partially deaf. Not even because she has been sick - again. Not even because it is an anniversary.

No, the tears come from the rejection of her country of birth. We have been receiving help from Disability Services for 2.5 years now. We came to Australia from New Zealand a little over 4 years ago. At the time we were unaware that the policies regarding New Zealanders in Australia had changed. We can still live here without an official visa permanently. We can still get Medicare. We can still get Family Tax Benefit. And we can most definately still pay the same taxes as everyone else!

But, if you dare to have a child, even a child born in this country, with a disability. Well, equality is no longer an issue.

In a little over 4 weeks, we will reach the anniversary of when we found out Samara had Down Syndrome. It was the same week we found out that Australia has official policies preventing the 'unwanted' from getting Permanent Residency. That, even though she was born here, the only way we, as a family, could get Permanent Residency was to move to the back of beyond and apply for a medical waiver (something that was not available as an option in the city). A medical waiver for a newborn baby girl. A baby who was conceived and born in this country. A baby this country did not want.

You see, 10 years ago, Australia changed it's immigration policy. Being born here doesn't give you citizenship. Not of this country, and not of your parents country. Yes, that's right. At birth Samara did not have citizenship of any country. And right now, she only has New Zealand citizenship by descent, which does not give her full citizenship rights. So in reality, she's only a semi-citizen. And even then, it is of a country she has visited but twice in her life. Her own country will not consider her one of them until she is 10 years old.

Now, this applies to everyone. Not just because she is disabled. So why do I call this discrimination?

Simple. The services she was getting from Disability Services Queensland.......Well, she has had them taken away. Why? Because she is not a citizen.

The financial help offered to all parents of disabled children through Centrelink is not available to her. Once again, because she is not a citizen.

The community cards that mean she can have a Carer attend theme parks etc for free she can't have, even though it costs the government nothing, because she doesn't get a Centrelink payment.

The funding we applied for from Lifeline, she is no longer able to get, because she is no longer registered with Disability Services.

But the thing that really hurts, is we have moved waaaaaaaaay out to the back of beyond in the hopes of getting that medical waiver. It is extremely expensive to live out here. The mining industry has pushed rental prices up way beyond what we paid to live 100 metres from the beach in Brisbane. Groceries are expensive. Travel too and from Brisbane to hospital appointments has killed both our vehicles. And on top of all that, we have to come up with $4500 to apply for our Visa.

And you know what.....After all this, they could look at Samara's diagnosis and say 'nah'. And there is not a thing we can do about it.

We just got a $1200 power bill. I don't know if that's because of the oxygen concentrator or what. But if we had our Visa, we would have been able to get some help with it. As it is, well, tough.

We didn't come to this country knowing what was ahead. We didn't plan to be in this situation. We came here in good faith. We love the country. We love the people. And we try to give back to the community as much as we can. We are decent upright people trying to make it in this world.

But we weren't born here. And in fact, one of us was born here, and that's still not good enough. Well, one day, Samara WILL be an Australian citizen. And when that day comes, it may be too late for early interventions that will make her more independant. Ironically, the cost will then come down on them. More than it would if they helped her now.

Anyway, that's my story. But what are the larger ramifications of all this?

Quite frankly, discrimination.

This country has the highest abortion rate of prenatally diagnosed children with DS in the world. 98%. That's right. 98 out of every 100 children diagnosed in the womb are killed for the 'crime' of being disabled.

Among many in this country (definately not all, but way too many) there is an attitude of 'why should my taxes go to support r****ds'. There is an attitude of violence towards many with developmental disabilities. (Once again, please note this is in the minority, but the link between the average Jo Public not wanting these people, and the Government not wanting these people is definately there).

And now, things have become so much about money, that people are suing the doctors for 'wrongful birth'. WTH???? This is your CHILD people!!!

It is difficult being told your child has a lifelong disability. It is difficult living with the financial ramifications of this. Parents of children with disabilities have so many stresses. This is why the government has any sort of help at all available. But, no matter that you are in this country legally, no matter that you pay taxes like everyone else, no matter that you were BORN in this country. We don't want to help you. You have to make your case in an expensive Residency application to convince us we ever want you. You are not one of us.

We will stay here despite the hardships. I love Australia. We need the warmer weather for Samara's health. And quite frankly, even if it kills me, I will MAKE them accept Samara by being here beyond her 10th birthday, when legally, they can no longer discriminate against her. She WILL be recognised for who she is. A fully fledged Citizen of Australia. Her country of birth. Her homeland.

Calling or Mandate?

Today, after church, I shared my open letter to the church blog post with the pastor. I was left with the feeling that this was my ministry, and that was great if it was what I felt called to. To a certain extent, I agree with him. It is a calling to be an advocate. But my question is, is it a calling to minister to the disabled and their families? Or is it something more?

To answer this, we need to look at Jesus' life. And at His words. I think it can be summed up in the one phrase "in what you have done for these, THE LEAST OF MY BRETHREN, you have done for Me." This is not a message given to a select few. This is not a case of one part of the body having a different purpose to another. Those callings are very individual, and God leads us each in the path He would have us follow. But, Jesus' words regarding THE LEAST OF THESE were given to ALL who profess to follow Him.

We can have the greatest of ministries, we can be reaching out to many. These things are great. These things are needed. But, if, in doing these things, we neglect THE LEAST OF THESE, we have neglected Christ Himself.

The Bible tells us we are known by our fruits. What do our actions tell us about what we are doing for Christ? What our actions telling others about what we are doing for Christ?

God may not have called you specifically to a ministry for the disabled, like He has me. But I can tell you now, that He HAS made our ACTIONS towards these, His precious children, the responsibility of every single Christian. If Jesus Himself were to return to Earth in a disabled body, would you be there for Him? Or would you walk out the door and tell Him you had more important things to do?

In a country where 98% of previously wanted babies diagnosed with Down Syndrome, are aborted, what are we doing to show the world that we are there for the families who choose life for their babies? We cannot decry their choices, when we are not going to personally be there for them. This can't be done on a case by case basis. Most people going down the abortion route don't exactly come to the church for advice! It needs to be so widely recognized that the church will be there for them that there is no question in their minds about it. This will only happen if it is so commonplace that everyone knows that the help they need is going to be there for them.

We are all individually responsible for how we treat THE LEAST OF THESE. How do YOU measure up?


Let's not spend our lives talking about living for Christ. Let's get out there and start living for Him.

On Autism, and Acceptance

In many areas of our lives, we are constantly being watched and judged. One of those areas is our parenting. Complete strangers, and even our friends are quick to jump up and down about our terrible parenting skills if they see a child who is out of control.

But what if that child is Autistic? He or she may look like any other child, but their disability is just as real as those you can see at first glance.

I have 3 children with disabilities. One (or maybe more of them?!) has Aspergers Syndrome, one has a Traumatic Brain Injury, and one has Down Syndrome. Each has her own issues. But, when it comes to judgement, I received more regarding my daughter with AS, than with any of the others. Particularly within the church/homeschooling community. Why? Because her behaviour was obviously due to bad parenting.

This attitude causes so much heartache and pain for so many parents. Many of the issues I face are now long past. But I am going to recall a few things that have happened recently for a dear friend of mine while changing a few details to respect her privacy.

This mother has been living with ASD unknowingly for years. She has more than one child on the spectrum. Yet in recent years, things have been particularly tough. One of her children is more to the autism end of the spectrum than the others. And this child has been very hard work for her. She is now at the point where most of her life revolves around this child. She cannot take the child out without worrying that road will be run onto, tantrums will be had, and others will be judging. Her social life has dwindled to almost nothing. I worry about her night and day. Many of my prayers are sent up on her behalf. Her husband is withdrawing into his work more and more - a common occurance in special needs families. Services out here are insufficient to meet this childs needs. Perhaps an AEIOU preschool would help. But her husband does not wish to move closer to one, so she plows on, taking on full responsibility for her childs education, behaviour, speech therapy, and all other needs.

She is perpetually tired. She is trying to be everything to everyone. She recently forgot an appointment at the end of a long and difficult day. Rather than understanding, she received an angry phone call whereby the caller refused to accept her apology. One could brush this off as being an ignorant person who didn't matter. But this was someone who holds a lot of sway for her. Someone who represents her only real social group. And now she no longer feels a welcome part of that group.

Autism is placing a lot of stress on this mother. Society is almost breaking her.

Sadly, I could apply this post to more than one mother I know in this town alone. Be quick to lend a helping hand, or a shoulder to cry on. But never judge another mothers parenting. You don't know the full story.

An open letter to the church

Last night, I was at a prayer meeting, and we were discussing the topic of  'why does God allow suffering'. In the course of the discussion, Samara having Down Syndrome came up. One of the women mentioned the classic belief that God only gives special kids to special parents. So I shared with her the tshirt design I have just come up with that it is through God blessing us with our special children that we become special parents, not the other way round.

Anyway, lately I have really felt a call to promote disability awareness. That's why I do the t-shirts, after all. But last nights conversation really got me thinking about the role of the church in reaching out to those with disabilities and their families. One day, I hope to share this with my church. One day, I hope to share it with churches everywhere. So if this touches on something in your own heart, please, feel free to share it.

LETTER TO THE CHURCH

Jesus would leave the 99 to save the 1. What does that mean? Would we put ourselves out for the 1, or are we happier with the 99 we already have? If 99 are already saved, who is the1? I don't think He was just talking about your average everyday sinners who need saved. If He was, the ratio would be more like leaving the 10 to save the 90. And I don't think that He was referring to the Christians who backslide. Cos the ratio would still be more like leaving the 80 to save the 20. Now, I know it is a parable. We are not really sheep grazing in a field. But why did He choose the number ratio that He did? I believe it is because we, even as Christians, put a value on human life. A value based on our own narrow views of who we invest our time on. Usually those who we expect to gain from. Either in church attendance, physical help, friendship, financial assistance, or other tangible 'returns'.

Think I am off the wall here? Let's imagine for a moment that I am a full time wheelchair user. I cannot walk at all. I've noticed the people milling around after the Sunday morning service, and they all seem to be happy and friendly. The kids are running around laughing, and climbing trees in their Sunday best. Something tugs at me. Maybe God has been gently calling me for a while. So one Sunday, I get all dressed up. Something that isn't easy for me, but if I'm going to meet God for the first time, I kinda want to spruce myself up a bit. Put in the effort if you know what I mean. It's a cold morning, but pushing myself up the gentle slope of the street (which, incidentally has no footpath, so I am sharing space with the cars on the potholed road), I quickly work up a sweat. I arrive at the church. Hold on. Something I hadn't noticed before. There is no ramp. Ok, so the building is old, the church is small, and ramps cost money. And until now, there hasn't been a wheelchair user in the congregation. The 99 people attending that church all have full use of their legs. But then I remember. I am the 1. The forgotten loner. It isn't cost effective to have wheelchair access when no-one has needed it before now. And even now, my tithes won't cover the costs for a long long time. I am, after all a beneficiary, so my tithes don't really amount to much.

Feeling despondent, I turn to leave. But a couple of people notice me. They run over and offer to lift me, chair and all, to the door. I gratefully accept. I repeatedly thank them for their generosity. I am basically prostrating myself with thanks that someone is offering me the chance to enter their church, where I should have automatically had access anyway. Just because I am human. But, instead, I have been put in a place of having to lower myself to the position of grovelling cripple. I am used to this, so I shrug it off. It is just a part of my life now.

The service itself was great. I really felt God calling me. So at the alter call, I wheeled my way forward, wanting to give my life to Jesus. But the pastor doesn't take the time to find that out. He immediately prays for the 'obvious'. That I would be healed. Saved from the curse of the wheelchair. HELLO, I want to be saved from the curse of sin, not this chair! I am a person here. Not a case study. Or an opportunity for you to witness a miracle. Please. Accept me as I am. Love me as I am. And lead me to the one who saves the soul. There will be plenty of time to talk about the other aspects of my life later. You could maybe even install that ramp.

Oh, but next time........Install the ramp first. I may not be the first one who has turned away.

So, what should we as a church be doing? Well, Jesus said that as we do to these the least of His Brethren, we have done it to Him. So, have we decided that those with disabilities and their parents have been given some sort of supernatural powers to deal with the life they have been given, and pray for them, while secretly being thankful God didn't think we were that 'special' to have to handle that situation? Do we tell them that if they can increase their faith enough, that He will heal them? Do we leave it to the government agencies to support them in whatever ways it is that people like 'THAT' need support?

God made it pretty clear. In what we do for these Brethren, we are doing for Him. Conversely, in what we ignore in regards to these Brethren, we are ignoring Him. It is not the state's job to provide for the disabled, the orphans, the widows. It is the church's job. The state has just had to take over, cos the church wasn't doing it's job properly. And truthfully, the state doesn't do that great a job of it either. Sure, there is some financial help and respite care available. But have you seen the hoops you have to jump through to get it? Sometimes it's easier to not bother. And those financial helps never come close to covering the cost of not being able to work, having to travel for specialist appointments, paying for a housekeeper cos you're too tired to lift your head another moment.

So, what as a church should we be doing? I don't believe God gives a special needs child on a family and says 'Well, you're on your own now. Let's see if you can pass the test'. No. He has provided for the least of His Brethren, by telling the church to take on the responsibility of helping out. If every Christian in our small town devoted just 3 hours a week (that's as much time as one church meeting) to helping a family with a disabled member, then I believe that we would be reaching into the lives of every disabled person in our community. 3 hours to offer some respite. 3 hours to do a bit of housework. 3 hours for an overworked, underpaid single mum to have a sleep.

Think you're too busy? Have too much else to do? Have your own family to care for? I know mothers out there, whose partners have left them, and whose children literally need 24/7 care. They sleep with one eye open. They are up and down adjusting tube feeds through the night. THEY are the ones who have no time. Yet they do it because they have to. It is the right thing to do. Well, Jesus tells us ALL it is the right thing to do. Not just the parents. Are you too busy to give Jesus 3 hours a week? Because, if so, then you are too busy to do just what He asks of you.

Doctors, lawyers, miners, 2 income families. You may work hard for your high incomes. Those with family members who are disabled work a lot harder. And most of them live below the poverty line. Think about that. Some of these people work 24/7, always on call. Doing medical procedures most of us have never heard of. Being Dr, Nurse, Carer, Interpreter, Researcher, and more in addition to the role of being a parent. And, they live below the poverty line. Something is amiss. And I believe it starts with the church to turn things around.

Disability awareness isn't just about acceptance. It is about embracing. Taking on whatever we can to ease the burden of care. The person isn't a burden. But often, the health issues, the physical demands, and, sadly the attitudes of others, create a burden. It is our job as Christians to be servants. We are Christ's representatives on Earth. Are we giving Him a good name?

My most precious design, and a few others!

 The other day, I had someone comment that they needed something that warned people not to cross her. She suggested something similar to what this says......Good for her, I say!

The idea for this one came from a picture of some graffiti that said Revolution, in much the same way as this does. As soon as I saw it, I thought, this would be good for disability rights!

 Like many parents of special needs kids, I have always found the saying 'God gives special kids to special parents' to be one of those things that is meant to make you feel good, while they are secretly thinking 'glad I'm not you'! So this is my way of setting them straight!

This one is dedicated to Charlie. Charlie was a little boy who only got to hug his mummy and daddy for 10 short weeks. I 'met' his mum on Facebook yesterday, where she is running an auction to raise money for the Royal Brisbane and Womens Hospital, where Charlie was born, and lived all but 6 days of his short life. Please go and support her efforts at Charlie Bear's Gift. In honour of his nickname, I have donated one of the teddy bears in my Cafe Press store to this auction. RIP little man xxx.

This design is available on a limited number of products in my store at www.cafepress.com.au/justjuniors. It is customisable, and has a space for your childs name, and their birth/death dates. It was such a hard design to do. And at the same time, a reminder to treasure every day we have with our children. I often feel so drained when I have to sit up with Samara night after night after night to keep her breathing. But then, I 'meet' someone like Charlie's family, and I am reminded, that I am blessed that I have a child to have to stay up with. And I would stay up every night for the rest of my life to keep her with me. My heart breaks for those who have had to say goodbye, despite all they have done. Thank you Stephanie for sharing your little man with us, and for your support of the hospital (that was also our home for many weeks!)

On a more personal note, Sara is now back home in New Zealand. Even with 5 daughters still living at home, I still suffer from empty nest syndrome! Alicia has been out in the world for 4 years now (we moved to Australia 4 years ago this month), but I'm still not used to it! It is especially hard when they don't even live in the same country! I wish so much I could go back, and do things differently, appreciate each day more, love them more dearly. I really am blessed to have a little one still. And I must admit, to clinging to the fact she won't grow up as fast as the others!!! LOL.

Samara seems to be sick again. Her ears cleared up, but yesterday she was all grizzly, and today she has spent the grand total of 2 hours awake. And both times she was woken up. Not sure what is wrong, but she is pretty miserable. That's the problem with having a child who is almost 3 but who has such a limited vocabulary. Good thing she is so cuddly. At least then I can comfort her if nothing else.

Today I rang to apply for the new Better Start funding that the government has brought out. Don't know if we will get it or not since I am a Kiwi, but it sounds like we will since Samara was born here. But I must admit, I am troubled by the fact that it only covers 6 disabilities. While Samara qualifies on two counts (the Down Syndrome, and she has a hearing loss of 55 decibels - the criteria being anything more than 40), there are many children out there who have disabilities that are a lot more disabling than her 2 put together. And they don't qualify. Simply because they don't have the 'correct' diagnosis. The 6 disabilities covered are Down Syndrome, Hearing and Sight losses, Fragile X Syndrome, Cerebral Palsy and Deaflindness. If your child doesn't fit one of these categories, they get nothing. Now, I know people with really mild CP but they are covered. I know people with mosaic DS who don't even show it, but they qualify. At a loss of 40 decibels Samara was still able to hear most things, and was only given hearing aids to help with her speech because she also had DS (this has worsened, but it shows how minor it is). Children with this mild loss qualify. Yet those with other chromosomal disorders, those with head injuries, those with a huge number of other developmental disabilities can't get the funding. What is wrong with our government? Please, no matter where you are from, check out this site where you can read more, and sign a petition to have this initiative made more widely available to all children in Australia with developmental disabilities.

Some new designs at last....

Well, I finally dug the old laptop out of storage. The one that has Photoshop on it, but also has the distinct disadvantage of the fan not being powerful enough to keep it cool! I have been itching to do some more designs for a while now, so here are the latest 4....

This one is customisable, so you can put in your own childs name and disability.

For the boys. And.....

For the girls!

And for those who are a little bit older!

Not many, I know, but it takes so long to upload them all to Cafe Press! Hopefully now that I have dug this computer our of hiding, I will get quite a few more done.

I have quite a collection of sayings, and am slowly working my way through them. But what I really need is to hear what you would like! So far I have made a few designs for those who wanted something specific to their childs disability, and I have learned a lot along the way. I am always open to new ideas, so feel free to share in the comments section.

On a more personal note, we have our 2nd eldest daughter staying with us from Christchurch, New Zealand. She heads back on Tuesday, but is leaving us for Brisbane tomorrow :( For the life of me, I can't figure out why anyone would want to be living there right now, let alone 2 of my children, but I guess at 22 and 19, they consider themselves indestructable!

Samara has been having a difficult winter, with me spending copious amounts of time sitting up in bed with her so she can breathe. Then to make things interesting, her eardrum burst the other day, due to an infection. This could prove to be a problem, as she is due to have her grommets replaced in the next few weeks, so it could affect the surgery dates. We have been spending most of our time at home, trying to keep her away from all the bugs going around. But, I'm not convinced it's really working!!

Disability Services, out here in the middle of nowhere, has taken a big Government funding cut, and we are now loosing our Local Area Co-ordinators. They were such an awesome couple (husband and wife were both employed there), and now we have just had to say goodbye to them. Roma won't be the same for many people without them.

Roma also lost a dear little treasure this week. Bethany Waldron was a young girl with Cerebral Palsy. She was known by pretty much everyone in this small country town. In fact, the town had just rallied and raised $30,000 for a wheelchair lift to be added to their van. But she spent the last couple of weeks fighting off pnuemonia, and finally succumed on Thursday morning. I didn't know her well. I am a newbie to town. But still, my heart is feeling very sad and heavy. How can one ever reconcile the death of a child?

Now I am feeling sad. And don't feel like saying much else. So I'll leave it there for now. Hopefully I'll be a bit cheerier next time. xxx