Tuesday 15 September 2015

Emmi-Belle is HERE!

You have all been patiently waiting for this very special dress to be released and it is oh so very close...
The Emmi-Belle dress will be released on 
Wednesday the 7th of October at 10am AEST
We will be donating $20 from each dress sold to helping kids with autism. 
The AEIOU foundation is one charity we will be donating part of the monies too but we are looking for another to spread the love. Please leave your suggestions below in the comments.
Autism is a lifelong developmental disorder. It affects approximately 1 in 100 people, that’s almost 230,000 Australians
As some of you are aware our little Emmi-Belle lives with Autism Spectrum Disorder. You would be surprised, but a lot of people have no idea what ASD is or have even heard of it. I would like to give you a quick run down of what autism is like in our life. Please keep in mind that this is a SPECTRUM disorder and all people living with autism are affected differently. They say in the ASD world,
"If you have met one autistic person, you have met one autistic person"
Now when I say "our life" I really do refer to our whole family, from mums to dads, sisters to cousins, Grandmas to Poppys we are all affected by autism in one way or another. You see, having a child with a disability is a tough slog but with it comes its ups and its downs.Trust me when you are "up" you feel you are on cloud nine and that everything you have put in so far has all been worth it. Every day is different as our Emmi-Belle can be very unpredictable at times yet SO predictable at others. We go with the flow and are very open and honest with the people around us about EB's condition. We try to educate and create understanding with the people around us as much as possible so that we can all try to understand our little munchkin as best as we can.
People often ask me "so what actually is autism?" and I find myself struggling to define it. For us it is a mixture of things that makes the "every day life" harder for Emmi-Belle.
Emmi-Belle has difficulty with communication, this means she knows EXACTLY what she wants but can't put the words together to tell us what she wants. She has the words in her vocabulary but can't string them together and use them in context to satisfy her needs or wants. So in most cases this results in her frustration escalating into a "meltdown". What is a meltdown you may ask? Well in the beginning I saw a meltdown as a tantrum but as I have learnt more about my little girl and about the reasons behind her behaviour I can now easily see the difference behind a tantrum and a meltdown. 
Emmi's meltdown begins with yelling and crying and probably dragging you to what ever it is that she can't get, if you don't figure it out quickly it goes "NEK LEV" and she becomes worried and her breathing changes. She is now in more of a state of anxiety as she does not know how to deal with the situation. If you try and calm her or touch her it escalates more, if you give her an option that is not what she was originally after, it escalates more. Eventually you just have to sit next to her and ride it out. This could take hours before she calms down or allows you to comfort her. 
With an autism diagnosis it is quite common for a child to also suffer from sensory processing disorder. For Emmi-Belle, sound, light and touch is intensified and a lot of other kids also have taste on that list. I don't think Em has an issue with taste as she is just a typical 3 year old that would rather eat chicken nuggets any day of the week. Having issues with sensory processing creates all types of daily obstacles, not just for EB but the whole family. This means it is very hard for us to attend an event as a family because too many people freak Emmi out. The grocery store is too bright, loud and cold. The shower on her skin often feels like pins and needles, birthday parties are a nightmare and an unfenced local park is a NO GO! Emmi-Belle is in her own little world and you need to have eyes on her 24/7. She is a wanderer with no sense of danger or awareness of the world around her. For a little almost 4 year old living in this world it must be at times be so frightening and my heart breaks for her when I can not help or understand her. I often get asked if Emmi-Belle will need a carer for her whole life and the answer is simply, "I don't know". Autism is the great unknown. You can only cross your fingers and hope you are making the right choices for your child. They do not know what causes ASD but they do know that early intervention is KEY! This brings me to why we have chosen AEIOU as our charity of choice...
Like I said earlier, every kid is unique and affected differently by ASD and all parents will have different views on early intervention so this is just our experience.
Emmi-Belle 3yrs old, started at AEIOU in January this year, 9 months ago. When she started I would have described her as being on the same level as a 14 month old. Emmi could not communicate at all, she was having melt downs on a daily basis and struggled with any type of interaction including with myself or her Dad. Em did not make eye contact and hated to be touched. Em would not give kisses or cuddles and would hide in dark cupboards to simply be alone. Emmi- Belle was nowhere near toilet trained and google had told me the average age for an autistic child to be toilet train was 6yrs old. She really was in her own little bubble and the world or anyone outside of it to her was non-existent. 
Since attending AEIOU full time Emmi- Belle has come so unbelievably far. Im not going to lie I am actually crying as I write this because I am so damn proud of how far she has come. In the beginning I was a little anxious as I did not know how she would handle the new environment and the structured program but before we knew it she was loving it. It turns out like most kids with autism EB thrives off structure and predictability ( something we are still working on in our crazy household). 9 months down the track Em can communicate by using picture cards (pecs cards) and using her words with the pictures. Emmi-Belle plays alongside other children and will engage in sharing and colouring in with her sister. We play chases around the house with the whole family and Em LOVES it. She will grab you and take you to the trampoline and ask you to jump with her. She will look at me in the eyes and say hello and goodbye, Em will sit at the table with us and eat dinner using a fork, she will ask for a drink if she is thirsty, she is toilet trained day and night, she gives cuddles when you ask for one and even jumps in bed for voluntary cuddles at night. Emmi-Belle is a totally different kid and so happy. Her melt downs have gone down to maybe 1-2 a week and we can manage them in around 15-20mins most of the time. Our little girl has really come out of her shell and we owe a MASSIVE thanks to the teachers and specialists at the AEIOU foundation along with our amazingly supportive, loving and understanding family and friends. We honestly could not get by with out these people and we owe them so much. We know this is only the beginning and we have a long way to go to get our little girl ready for mainstream school in only 15 months but she is kicking goals and that is the main thing.
Oh and for the Mummas out there, when I say I love you to my little girl she says
" I wuv ooo" and gives me a kiss. 
I really hope this gives you a little insight into our life and living with ASD. Please help us by talking about autism and spreading awareness. With awareness comes understanding and with understanding comes acceptance for our little ones.
Love Nik xx

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