Premmies & Big School

I won’t lie, i am really worried about sending my son (ex prem) to school next year.

A quick recap about his life so far. He was born at 27+3 weeks gestation and spent 110 days at Monash Medical Centre. He has an 18 month speech delay although i feel that he has improved over the past year & he was diagnosed with Sensory Processing Disorder at 2yrs old. He turned 5yrs old in March 2011 and he will be almost 6yrs old when he starts his first year of school. He has been attending early intervention weekly for the past 3 years.

We are about to start the task of arranging interview times with schools around the area. We have quite a few schools to choose from which is great but the big question is, which one can cater to HIS needs. I guess this is why we need to start the interview process. As far as i am aware, schools are given a certain amount of funding each year to help kids with special needs however would he be included in the list of recipients? Sadly Sensory Processing Disorder is not on the “list” to receive funding at this time so i do constantly wonder if it is recognised within a school environment? It is quite irritating that our kids with SPD arePicture-680 not recognised as this is a neurological disorder causing difficulties with taking in, processing and responding to sensory information about the environment and from within the own body (visual, auditory, tactile, olfaction, gustatory, vestibular and proprioception).

I have been advised that he will most likely “not” receive an aide in school. This worries me immensly as he has an aide at Child Care and also at Preschool. It has been a long process to receive funding through Kindergarten Inclusion Support Packages (KISS) but i am happy to say that he received funding in term 1 and has just been approved for further funding until the end of the year. We are so lucky that he has such a dedicated and amazing teacher who has put so much work into his application.

His aide at Kindergarten assists with the following;

  • Intervenes to help Ronan reset activity or model words that Ronan can use to help him get past his peers and join play appropriately.
  • Helps redirect Ronan onto an activity and assist in helping him become involved. This may be directing him to a quieter activity to calm down, then moving onto an activity he enjoys or introducing him to a new activity and staying with him and the small group to assist him in his participation.
  • Bringing Ronan’s awareness to peers emotions and asking peer what is wrong. Then talking about why they feel this way or what we can do to help them feel better.
  • He needs that one on one support in order to help him to focus on a task and guide him

What will he do next year if he isn’t able to receive an aide? I can see already that all his school reports will read “had trouble focusing in class”, “disturbs other children in the class” etc.. I am worried about not knowing the correct questions to ask each school.  It will be very interesting at the interview as i have been told that they actually try to interview “you” on behalf of your child. Good luck to them i say because i am so used to being an advocate for my son that i will be the one throwing questions their way.

I’d love to know if you were given a checklist of questions to ask at your parent interview if you have a child with special needs and how did/are they going in school? To make things worse, once he reaches school age he is not eligible to receive support from his current early intervention and with no funding available, as stated above, we will be totally on our own as his current service is somewhat subsidised.

Please tell me that we are not alone…

Photograph supplied by Foons Photographics

Celebrating “Green for Prems” Photos

bandhandsWe would love to include photos on our blog of families celebrating our “Wear Green for Prems” day on April 6th 2011. We were so excited to see 1000′s of families celebrating on the day either by wearing green or one of our wrist bands. The event was so wide spread throughout Facebook that we are sure to have missed many great photos so we would like to collaborate a few on our blog.

If would like to share a photo of the day please use the form below. We also ask that you include a comment which we will also place next to your photo.

(Only 1 photo per family)

Your Name (required)

Your Email (required)

Details about your photo

If you would like to include a comment about our Green for Prems day please include it below (max 100 words)

(Please attach a JPG image. Maximum image size 800 by 600 pixels)

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Type in the code above then press send

Funny Premmie Baby Photo Competition

We are very excited to announce our funny photo competition. With the amazing support from 6 amazing photographers around Australia we have banded together to bring this competition to our members. Each photographer is supporting our families and are dedicated to help families of premature babies by donating a prize for our competition. Their support is very much appreciated and we have a total of up to $2,500 worth of photography packages to win!! Prizes are available in NSW, SA, WA, ACT, VIC & QLD

For details on how you can enter please visit our forum

Competition closes on Friday 2nd October 2009


Photographers

South Australia

hc

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Western Australia

lauralogo

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Sydney

lk

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Melbourne

mj1

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Queensland

splash_logo1

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Canberra

folio9logo

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cameraa1

Good luck and we hope you enjoy our fun competition!

Testimonials From Premmie Families

L’il Aussie Prems has become a real community since the sites inception in March 2007. The amazing families have written some very thoughtful messages to explain the support they have received from the website. Thank you to each and every family for such generous and powerful words of thanks. If it wasn’t for the families, L’il Aussie Prems wouldn’t be the success it is today so a HUGE thank you to all our members!

Member Testimonials

In the beginning it was a safe haven for me where I wasn’t alone…I was one of many. It was good for me socially as we were not long home from hospital and I couldn’t get out much being winter and being so afraid of Charlie getting sick. Then it became a place to share all the magical milestones and to get help with issues that other parents just couldn’t understand. On L’il Aussie Prems Charlie isn’t different..he’s the norm, then of course we fell pregnant again and you all supported me through a very scary pregnancy. And now you all share my joy in Lizzie too. L’il Aussie Prems is great…we can share craft, we send care parcels, we trade clothes…meet new friends…cry and laugh together…its done so much for me.

Mandii, Charlie (born at 27 weeks) & Elizabeth (born full term), QLD
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L’il Aussie Prems is my “mothers group”. When I came home with the boys I was alone , isolated and scared. I stumbled across LAP. I have found that the mums all helped me feel welcome & normal. I was no longer isolated as a new mum. It is also the one place where milestones mean so much, even the small milestones. I can get excited about little things and not feel silly sharing them with you guys.

Jules, I thank you from the bottom of my heart for creating a forum that reaches out & connects so many. I am proud to be a LAP member.

Jenny & twins Thomas & Alexander (born at 24 weeks) – VIC
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L’il Aussie Prems is a security blanket. I joined when i was 23 weeks pregnant & was on bedrest due to pre term labour. I dont feel like i am the odd one out cause the kids were born so early. Everyone understands what we’ve gone through to get to get to where we are today, even if we arent home yet or slight set back we’ve had. Even though they feel like the world is coming to an end to me.

To everyone – I cant thank you enough, i truly cant.

Krystal & triplets Aleah, Tahlia & James (born at 28 weeks) – NSW
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At first L’il Aussie Prems was a wealth of information to me about Premature birth. I wasn’t sure about joining the forum at first, being the only male at the time, but everyone was fantastic. Once I was on the forum I found a new home. It is somewhere where I could share my feelings without being insecure. In public I never ever show my true emotions and hide behind a traditional male image. There were times where I did it really tough with Kai and LAP enabled me to reflect, share and move through his journey. On LAP I feel like I can be myself and share Kai’s challenges and know that the people you are talking to understand because they have been there.

On LAP Kai isnt to small, he is not ‘behind’, he isn’t to sick or weak and he isn’t different. He is appreciated for being the beautiful boy he is no matter what his weight or health. I love reading about others successes and achievements with their kids and I hope that I can be support for others who may need it through challenging times. LAP has provided me with support, encouragement, strength, protection and a few laughs and tears along the way.

I feel like I know so many of you but actually havent met anyone from LAP yet. The LAP community is an integral part of my life now and I never intend to leave. Thankyou for being so welcoming and accepting of a Dad and thankyou for making the winding road of premature birth far easier to climb.

Sean dad to Kai (born at 32 weeks) – VIC
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I too was not sure about joining the forum but did so on the advice from my GP to help with my PND. Here I found a place that was secure and supportive especially in the first year of Josh’s life where much of it was spent at home for fear of sickness and readmission to hospital. I was determined once home we were not going back even though it meant living in isolation. This forum has allowed me to discuss my thoughts no matter how stupid they have felt at the time and have been met with responses of understanding, support and true kindness. Even though most of us havent met this still feels like a family unique and bonded by the common experiences of premature birth.

Kate, Joshua (born at 30 weeks) & Jenna (born full term)SA
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I was asked how did I find L’il Aussie Prems. Well, Jules found me, through a magazine article. And I am soooo grateful. I didn’t jump in immediately. I just paddled at the edges for a while. Until I felt my world closing in as our 1st anniversary of getting home approached. As soon as I introduced myself and Rachel I was overwhelmed with the warm, friendly and funny (nice) responses. The families that I have “met” through LAP are more family to me than my own. Here I can celebrate all the milestones because for us there is no such thing as a small achievement. Here, everyone understands the significance of a day that would seem “normal” for most other parents. Here, Rachel is a star, like all our kids are. No one is odd or disadvantaged.

Since joining LAP I have learnt so much more about toddler prems and I’ve been able to ask questions. There’s always someone out there that has a clearer or better perspective, or has been there and done that.

LAP is a family. LAP is a community. LAP is a support group. LAP is a pool of real world information. LAP has been a life line for me.

THANK YOU JULES
THANK YOU LAP
THANK YOU EVERYONE

Rhonda & Rachel (born at 24 weeks)QLD
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Having a premmie baby can be a really lonely and scary experience. LAP helped me through the most difficult journey in my life to date. I used to be SO sensitive about our daughter’s size and gestation and the stares and comments from members of the public. One year down the track and I am proud and confident in telling people who ask about our daughter, that she is an ex 27 weeker, 605 gram baby who is happy and healthy. We wouldn’t be where we are today without the wonderful support of the LAP members. Thank you Jules for creating this amazing site.

Elle, Tony and Arielle (born at 27 weeks) - QLD
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Lil Aussie Prems has been a life saver! The increadible wealth of information avaliable from not only the website but also its forum members is incrediable. The forum and its members are wonderful, caring and very supportive! We have all shared our joys, sadness, troubles, you name it we share it and we provide support to one another that we need. LAP is not just a group of random people – we are a family!

Sarah, Hayden (32 weeks) & William (30 weeks)

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Since having my daughter maddison and finding LAP i never feel alone no matter what problem you are facing with your premmie baby LAP members are always there to give help, advice and support. We are more than just people in different states and countries on LAP. Without LAP most of us wouldn’t know what way to turn when raising our premmie babies. I am so grateful to be able to access a site like this..

Janelle & Maddison (born at 32 weeks)

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We love feedback and welcome everyone to email us with their comments about our website. Please email us direct at admin@lilaussieprems.com.au

Premature Baby Support Forum

Our forum is a safe and welcoming place to gain support after the birth of a premature baby. Over the past year our membership has grown with more families joining on a daily basis from families currently just starting their NICU/SCN journey to babies who have been home for years, some with no ongoing issues and some children that have conditions that will continue for years to come. No matter what journey your premmie children are on our supportive community that is L’il Aussie Prems has become a home away from home and a family to so many.

Forum topics range in diversity from breastfeeding & expressing questions, toilet training, seeking advice on family matters, celebrations of milestones, photos, competitions, introductions and new arrivals to the L’il Aussie Prems community.

For a glimpse into our community, some of our latest forum topics are below.

Some home photos

Wipes

How much did your bub weigh at birth

Snaps sale

Hello everyone

Adelaide ladies

Which state are you from

How did you find L’il Aussie Prems

Why eat when you can play

With over 950 families registered on our forum you can be sure to find plenty of information, support and answers to many questions you may be asking after giving birth prematurely.

We welcome you to join our support forum. Everyone is welcome. We look forward to hearing about your premature babies and all about their amazing journey.

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Media Release: Mother of triplets sets the pace to win Australia’s first Local Premmie Hero award

Sophie Smith is an inspirational mother. After enduring the enormous personal tragedy of losing her three sons who were born prematurely in 2006, she set out to honour their memory by running a half marathon. Her aim was to raise enough money to enable the Royal Women’s Hospital in Randwick to purchase a single life-saving state-of-the-art humidicrib.

Sophie’s mission touched a chord and motivated so many people that in the last two years she, her husband Ash and their team of runners have raised over $250,000, enough to buy not just one but ten humidicribs, ensuring that many of Sydney’s tiniest and most fragile babies will benefit from this mother’s compassion for years to come.

Sophie is now being acclaimed as the winning nominee in the inaugural Local Premmie Hero awards – Australia’s first award to publicly recognise and honour the kindness and hard work of individual volunteers within the local premature baby community. These ordinary yet extraordinary people make a huge difference to the lives of families dealing with the challenges that come when their child is born too early, both during their hospital stay and beyond.

Awards were also presented to Karen Cuthbert, who lovingly sews tiny clothes for the smallest premature babies and gives them away to families around Australia, and Julie Clarke, who has been instrumental in founding support groups for parents of premature babies and helping other parents to do the same.

The Local Premmie Hero awards are the brainchild of the L’il Aussie Prems online support website and are proudly sponsored by L’il Aussie Prems and Practical Parenting magazine.

“It is an honour for us, as a community of parents, to be able to pay tribute to those people who go out of their way to make things easier for families travelling the often difficult road that premature birth can bring.” said Julia Toivonen, founder of the L’il Aussie Prems website and mother of two premature babies.

Nominations for the 2010 awards open on the 1st February.

(Our media release has been written by Kathryn Teale, mother to Talia born at 26 weeks)