The comments people make

Have you ever wondered what goes through people's minds when they say the things they do about our special kids?

I have had several over the years. "Did the tests not show it?" What? Are you saying we would have been able to avoid being the parents of our beautiful daughter, who is sitting right here in front of you, if the tests had 'warned' us??

"I'm sure she has a mild form." No, actually she has it in every cell of her body. It is the most "extreme" form there is! Does that make you think any less of her? Cos I don't.

"I'm sorry." What for? Your comment? Better not to say it then!

"They are so loving/happy etc". Who are "they"? My family? Children under 5? Those of European descent? Oh, you mean her Down Syndrome? Whoops, missed that one!

Or, what about today's one? One of the most common ones I have had. One that inspired the following design (which I have yet to upload to Cafe Press). "I know someone who was told her baby would probably have Down Syndrome. They offered her a termination. But the baby was born perfect!" Ummmmm, MY baby is PERFECT! And are you implying that it's a good thing she didn't terminate JUST because the baby was perfect. Like it wouldn't have been such a tragedy if the baby HAD had Down Syndrome...

And this whole line of thinking led to this design as well! I won't be putting it on Cafe Press. It is more just an

expression of frustration at the fact that in Australia 98% of babies prenatally diagnosed with Down Syndrome are aborted.

Wanna be famous??

Ok, maybe not famous in the big name star way, but if you want a whole bunch of parents with children who have Down Syndrome to admire your little star who also happens to have Down Syndrome, then I have a great opportunity for you!

A friend of mine is collecting photos of children with an extra 21st chromosome to put on a montage she is compiling to go with this ---------->>>>> gorgeous song, that her mother in law wrote for her son, JJ.

Click on the play button in the right hand column to here the song.

If you have an angel you just HAVE to share with her, please contact her at

terakstacey@gmail.com and she will send you your own copy of the song, along with a model release form to complete and send back with a picture of your little darling!

The dreaded onset of winter

Time for something more personal....

Here in Australia, the days are getting shorter, and the nights are getting colder. Admittedly, not as cold as my native New Zealand. But cold enough to put the oil column heater on!

And with the winter come the colds and flus. And hospital visits. Anyone who's child has respiratory issues will know what I mean. For us, a regular cold means predimix, oxygen, sats monitors, nasal suctions, and sometimes IV's and adrenaline. And this year's cycle has begun!

4am Thursday morning saw us at the ER with a gasping 2 year old. After a few hours on oxygen and predimix, her sats were back to normal from the mid 80's where they had been sitting, and we were sent home to get some peace (the ward - if you could call it that) at the local hospital was being renovated and was VERY noisy!) before returning in the evening. Thursday night was spent trying to sleep at the hospital, where the childrens 'ward' (and I use the term very loosely - one room with 4 beds) was taken over by elderly men when the rest of the ward had filled up! So Samara and I were sharing a bed in a tiny room with no TV, and no door barrier to keep her in! Not a pleasant experience overall!

Our local hospital is probably down there with the worst of the hospitals in Australia. In a town of 7,000 in Queensland's South West, we are miles away from anywhere, and the staff are well below par with those we dealt with when we were living in Brisbane. Rather than having her on constant sats monitoring, they just checked on her once every 2 hours. Not good enough for a child who has sleep apnea, and who I had to stay awake to nudge whenever she stopped breathing! I'll be kicking up more of a stink if she ends up back there, I can tell you!

Anyway, she came back home yesterday morning, but didn't have a good day or night. I have been up with her since 4 this morning, with her teetering between being well enough to stay home, and sick enough to be in hospital! If we had a better hospital, I probably would have taken her in, but really, at least at home we could monitor her constantly!!

Last night was her last dose of predimix, so tonight may be worse. We'll just have to wait and see.

And this is the down-side of Down Syndrome. The sickness, watching Samara literally punching herself in the head, and bang her head against the wall because she is frustrated at not being able to breathe. And then, dealing with a hospital that is not doing enough to help her.

I wouldn't change her for the world. But, oh, how I wish I could change this aspect of her extra chromosome.

What things do you find the hardest about your LO's disability? Is it the day to day care, the health struggles, dealing with the so-called professionals? I really want to learn what it is like for all special parents. It is so easy to get into our own little specialised worlds. To become experts on a particular condition. And to forget that others are struggling too. I would love to hear some of your stories. To expand my horizons, and open my mind to the lives of others, so please share in the comments, or let me know if you would like to guest blog your story.

In the Beginning

The very first Awareness design I made was this one......

Samara was only a few months old, and I was still struggling at times to come to terms with her diagnosis. I saw this phrase online, and wanted to do something special with it. So I had a bit of a play around. I'm not an artist, so I had to put my thinking cap on. I could picture what I was after, but wasn't sure what the next step should be.

Then I found a photo I had of 3 of my girls on the way back from the Royal Brisbane and Womens Hospital to Ronald McDonald House. And, totally unlike her mother, there was my daughter in a perfect size 8 pair of jeans!! (size 8 is close to as small as you get in Australian sizing). So with a bit of playing around, and a fair bit of swearing, I managed to trace them using only a very sore finger and the silly mousepad on my laptop! But, I was pleased with the result, and I was starting to turn the corner from sadness into pride!!! And that was what really mattered!

In fact, I had so much fun doing it (well, completing it anyway) that I went on to design some more. Some were based on saying that have become part of the disabled community, and some I came up with on my own. Over the next few days, I got onto a roll and made the following designs.......

Some of these have been uploaded to Cafe Press, and some to www.zazzle.com.au/justjuniors. Each upload takes around an hour to do, so not everything is on both sites!

Recently I decided to start selling my designs at my Facebook store www.facebook.com/justjuniors and started by making individual transfers, and buying t-shirts from the likes of Target to iron the transfers onto. But there were too many what-ifs, and the black in one of the ones I made Samara ran in the wash. They also took extra care - needing to be handwashed.

Lets face it, what parent, let alone parent with a child with special needs, has time for handwashing? Not me, that's for sure. So that's when I decided to go hunting for a business that could make the t-shirts for me. With the help of a dear friend, Brooke, I found the Zazzle site, and then checked out the Cafe Press stores too.

Expanding into this market has meant that I could offer you products other than t-shirts too. From magnets and badges, to ipad covers and shoes. The range was really impressive.

At this point, the only place offering the shoes is Zazzle, and the only place offering customisable designs (add your own name, disability etc) is Cafe Press. Hence the reason for offering my designs at both places.

I hope you enjoy browsing through my stores, and if you would like to see something made for your/your childs disability, please let me know! I would like everyone to be able to promote their causes, not just those of us whose kids have the more common disabilities!

10% Discount

Cafe Press is currently offering 10% off through participating stores (mine!) when you spend $40 or more. Just enter promo code: AMAY1140 at the checkout!

Here's a sneak peak at a few of the designs....

Next time I will start sharing the stories behind some of the designs.....

Welcome

Welcome to my new blog! This blog has been set up to show you my new Disability Awareness designs, to discuss the stories behind them, and to allow you the opportunity to share what you would like to see available.

The first designs I made were to raise awareness of Down Syndrome, after my 2.5 year old daughter Samara was diagnosed with an extra 21st Chromosome at 4 weeks of age. At the time, I took the news pretty hard. Designing the t-shirts was, for me, a part of the healing process.

Having shared those first designs with a few people, I began to realise how hard it is for people to find things like this, that tell people the truth about our beautiful children, and give us the opportunity to let the world know how proud we are of them. Then, I had friends who have disabilities themselves who have told me that it's not only the parents of disabled kids who want to spread the word, but disabled adults as well.

Many of today's adults with disabilities grew up in a time when acceptance was even lower than it is now. Diversity amongst people was not something that was valued in the past. These adults have a voice. They want to be heard. And it is my mission to help them express that voice!

Something I am endeavouring to do, is to listen to all those out there who want to be heard. It is relatively easy to find awareness products if you or your child has Down Syndrome, Autism, or is in a wheelchair. But what about those with the likes of Ch18q-, Mitochondrial Disease, or one of many other rare conditions? In the past few weeks, I have had the priveledge of working with the mothers of children with these conditions. I have gotten to know a little of their stories, and I have learned about disabilities I had not heard of before. In working with these mothers, we have come up with designs that help them express their love of their children, and their desperation to see the world accept and love them for who they are.

To me, this has been the greatest experience of all. Because by reaching out to these people, I have had my own life enriched. If you have an idea for something you would like to see made, or if you want help in coming up with ideas to promote advocacy of the conditions that are near to your heart, feel free to use the comments section to let me know.

Also, in the comments section, I would love if you shared your story. All comments are moderated, and nothing nasty will be allowed to get through. This is a place I would love everyone to feel safe. A place, where one day in the future, as I get to know you, maybe I could have some of you guest blog your stories, so that we might support one another in our journeys.

Here is a picture of my little angel Samara wearing one of my t-shirt designs, and a DS inspired tutu for World Down Syndrome Day 2011

Welcome to Holland everyone! I hope you enjoy the journey!