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

Introduction part 1

If you’ve landed here chances are parenthood hasn’t been the ride you were expecting. Or, at the very least, someone you care about is embarking on the unexpected ride that is premmie parenting. Just over four years ago I started down this path with the birth of my first child Erin who was born at 26+3 weighing 428 grams. At the time she was the second smallest surviving baby born at the Royal Brisbane and Women’s Hospital.

Despite her tiny size and early gestation our NICU stay was fairly uneventful. I’m incredibly grateful to have never received that phone call. The one that makes the blood drain from your face while your head prickles and the world spins. It was long though. 148 days, nearly five months of daily hospital visits and expressing milk in the wee small hours, watching other babies “graduate” while for yours nothing much changes. Some days I think that might be one of the hardest things.

Things started to get hard for me by the middle of our stay. The shock had worn off and I was becoming worn out both physically and emotionally. We were into our third month and Erin was still in the same room, she’d finally made it off the vent and on to CPAP but again nothing was happening. Now I’m not good at waiting at the best times, but sit me in a NICU day in day out and watch me crumble.

This particular day a mum of triples came into the expressing room excited that two of her sons had been graduated to room two, one step closer to going home. That day I just went downstairs and cried. To some degree you expect the “rollercoaster”. You’re told to expect it at least, what no one tells you, or at least they didn’t tell me was to expect the incredibly long periods of nothing. The days when you weren’t sure you were ever going to get home, not because things were bad, but because things were the same. Always the same.

We did get home though. My daughter was nearly five months old, weighed a healthy 3.2 kilos and was still very much a baby—one thing I was sad about missing out on. Things were good, if a little bit of an anti climax, we got to be together, just us, as a family for the first time ever. Things were good.

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Average hospital stay for a premature baby


Some of our wonderful forum members and mummies have been hard at work finding out what is the average time a premature baby will stay in hospital for depending on their gestation when born.

We had over 190 premature births recorded from 23 weekers up to 36 weekers to help figure out the average length of stay thanks to our forum members. The stats are very interesting and we hope will provide further information for parents with premature babies currently in hospital. These stats are not reflected by the weight of each premature baby, just the length of time that they spent in hospital. The averages would of course change for twins & triplets.

They are below;

Baby born at 23 weeks gestation – Average of 163 days (23+3 weeks) in hospital
Baby born at 24 weeks gestation – Average of 147 days (21 weeks) in hospital
Baby born at 25 weeks gestation – Average of 104 days (14+6 weeks) in hospital
Baby born at 26 weeks gestation – Average of 114 days (16+2weeks) in hospital
Baby born at 27 weeks gestation - Average of 89 days (12+5 weeks) in hospital
Baby born at 28 weeks gestation – Average of 74 days (10+4 weeks) in hospital
Baby born at 29 weeks gestation – Average of 60 days (8+4 weeks) in hospital
Baby born at 30 weeks gestation – Average of 51 days (7+2 weeks) in hospital
Baby born at 31 weeks gestation - Average of 39 days (5+4 weeks) in hospital
Baby born at 32 weeks gestation – Average of 36 days (5+1 weeks) in hospital
Baby born at 33 weeks gestation- Average of 21 days (3 weeks) in hospital
Baby born at 34 weeks gestation – Average of 18 days (2+4 weeks) in hospital
Baby born at 35 weeks gestation – Average of 14 days (2 weeks) in hospital
Baby born at 36 weeks gestation – Average of 11 days (1+4 weeks) in hospital

Remember that this is just an average from 190 premature births recorded and not an Australian average. Not all babies will fit within the above results. Each of the babies included in these results all had different complications at birth including IUGR (growth restriction) so they were born smaller than the average of their gestational age, dependant on oxygen for longer due to lung complications so their time in hospital greatly differed. Most babies come home on their due date however others sometimes stay a little longer depending on each child’s circumstances.

Does your premature baby fit within the above averages?

Please feel free to view the thread on the forum for further information.

patch

Maxx born at 25 weeks

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The subject matter provided in these articles is strictly for informational purposes alone and should never be used in the place of a doctor’s advice. Please ALWAYS contact your doctor if you ever have questions or need advice in any area where medical advice is needed or medication is suggested.

The Joys of Having a Comfort Blankie

This morning while Brendan was watching tv I took the opportunity to grab his comfort blankie of the floor in the kitchen and threw it in the bathroom, to be washed after the load thats in now.

It smells, it smells REALLY bad. It’s also filthy, it has chalk and all sorts on it from being dragged everywhere.

Once Brendan had finished watching tv he went into the kitchen and then everywhere looking for his blankie… he was getting so upset so I had to give it back.

Hoping to still get it washed though…..

Latest Premmie Baby Competition

The Bub Born Early website is giving away a copy of their latest creation, The BubBE book to one lucky family. The BubBE Book was created by Natasha Bowden to be a guiding hand along the Neonatal Intensive Care Unit (NICU) journey. It is essentially a baby book for the premature child and their parents, in which all of the unique experiences that come with being born, or having a child, prematurely can be recorded.

To enter this fantastic competition visit the Bub Born Early website, answer the following question and email your answer via their contact us page.

Question: What hospital was the authors premature baby born in?

The competiton closes on Wednesday 17th December 2008.

Premmie Baby Birth Announcements *NEW*

Premmie Birth Announcements are now available online to all families of premature babies throughout Australia. We welcome all parents, grandparents, friends and relatives to submit the birth of their babies who either just entered into this world or were born some time ago, there is no time limit. L’il Aussie Prems realises how special all premmie baby’s are and encourage you to announce the birth of your little miracle.

To enter your little premmies birth announcement please visit our Premmie Birth Announcementspage. You may also view our Premmie Birth Announcements List.

Congratulations and we look forward to sharing your premmie babies birth with you.