Simply Isla

We started watching Marvel movies just after Christmas with Isla and have just finished the whole timeline. I had never seen any and really enjoyed. Booked a trip to Welly to see the Marvel exhibition. Also saw the Dinosaurs of Patagonia at Te Papa, went on the cable car and went to the Space Place. A busy day on a beautiful day in Wellington.

Isla’s class had a disco at the base school today. Unfortunately she found it a bit loud and overwhelming and couldn’t join in. Her teacher got this nice photo of her though before they left.

April is Autism Acceptance Month. I love how this highlights the strengths of autistic individuals and their unique way of thinking.

Loonngg bike ride today with aunty Lisa Cooper. From Glen Innes to Orakei via the cycle path, then down along the waterfront and then back home. Isla getting better at spatial awareness but does need constant prompting. Doing amazing though 🙌

Would you want your kids to go here?

If you haven’t already please sign and share this petition https://www.change.org/Sommerville

The special school that's being starved An Auckland school for some of our most vulnerable children is crumbling, and any hopes for a rebuild have just been dashed by the government's moves to halt school property developments.

I had a similar experience to this. By the time we got our appointment with the geneticist she produced a brochure about 2q23.1 Microdeletion Syndrome for my information. I had to point out that was Isla on the front cover. Everything I have found out has been through a Facebook support group. Not from any medical professional.

Even though Isla is currently the only one in NZ that we know of with her condition., it is not actually that rare to have a rare disorder.

But there's no official rare disorder register so it difficult to know exactly how many people are actually affected. Chris Higgins, Chief Executive of Rare Disorders NZ, says they tend to be more conservative with their figures, and the number could actually be higher.

I should mention there is a closed group called Unique NZ where we self register chromosome differences. Go to https://rarechromo.org for further info.

Rare disorders aren't unusual enough to ignore One in 17 New Zealanders have what's termed as a rare disorder. March is the month to highlight their lives and struggles.

Thank you to everyone who has signed and shared. We are starting to get momentum now so please sign if you haven’t and share.

These children, New Zealand's most vulnerable, have been forced to learn in a school deemed unfit for typical learners!! It is a disgrace that children with special needs are granted only with an abandoned school. The children and the teachers have been suffering under its inadequate conditions for years.

https://www.change.org/Sommerville

Weetbix Try-Challenge ❤️ not quite a triathlon- Isla tricked me !! Here are some more photos.

Please sign the petition https://chng.it/XHN5FdnQnw

To be honest this probably wouldn’t have been on my radar 15 years ago until our third child was born with a rare chromosome disorder. I never thought I would be raising a daughter with special needs but you never know what life has in store. Isla is enrolled by Sommerville but is fortunate to attend the brand new satellite class at Glendowie College.

However the kids that have more complex needs attend the base school in Glen Innes. This includes the Tāmaki Intermediate buildings that were deemed unsuitable for the education of neurotypical learners so were closed.

The Ministry of Education acknowledged it was not fit for purpose 10 years ago and promised a new school. Recent developments caused a significant delay and now has been put on hold. The school has continued to deteriorate creating an unhealthy learning environment.

Sommerville have been forced to close their roll so this will mean more students may have to attend mainstream schooling and put more pressure on local schools that are not suitable for them.

Please sign this petition to support us https://chng.it/XHN5FdnQnw

Property pause: Auckland school has mushrooms growing on its walls Sommerville Special School is among 305 schools left in limbo amid the Government's urgent inquiry into the school property system.

So heartbreaking for Sommerville school. Isla attends a satellite class so doesn’t directly affect her but it is shocking having vulnerable kids in these conditions. They have also had to close off new enrolments as can’t take any more students in with the school in disrepair. Hopefully this review will put them at the top of the list.

Rotting classrooms as Govt hits pause on school rebuilds Twenty school building projects have been paused and up to 350 could be scaled down or scrapped amid a ministerial inquiry into ballooning repair costs.

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Some more information about MAND. A lot of kiddies with Isla’s disorder have issues gaining weight and height and other health issues. Although Isla is the shortest in our family I don’t think this is related to MAND but hard to know for sure. We only see a neurologist regularly now to monitor Isla’s seizure meds. Isla gets access to an OT through school. We have seen in the past but no longer see a SLT, geneticist and opthamologist. Isla was assessed by an educational psychologist who gave us the ID diagnosis to add to the list 🙂 .1

Isla is rare! Hard to get accurate numbers but think we are up to about 650 worldwide diagnosed with her chromosome disorder with her being the only one in NZ that we know of. Friday is Awareness Day so I’ll be sharing a bit more about MAND and what makes Isla truely unique. .1

Happy 9th birthday Bo 🥰

International Epilepsy day was on Monday. Isla’s seizures are pretty much controlled with meds she has taken since 3 years old. She occasionally has small breakthrough seizures when she outgrows a dose. It is a common phenotype of her chromosome disorder.

Weekend bike rides. I know they are controversial but loving all the bike lanes for Isla.

This is a great series that gives an insight into a family who have a child who has an unknown chromosomal disorder and signifinant extra needs. It's a brilliant portrayal of what many families experience and is done so with sensitivity, honesty and humor. It was written by the Dad of the daughter and family portayed in the series so is very authentic, and acted superbly by David Tennant, Jessica Hynes, Miley Locke and Edan Hayhurst. It is hard hitting at times, but so well done, with lots of magical moments.

https://www.neontv.co.nz/series/there-she-goes?fbclid=IwAR0vQrU22F-SaKkaDqxd-bJ54wA2jLEH3EJARXIQjUETGOLw4gITF6t8I4w

Watch There She Goes Online | Season 1 - 3 on NEON Watch There She Goes season 1 - 3 online with NEON - try it free for 7 days!

First day back at school 😍

Hello everyone, Brian & Ross will on the road again shortly namely for the Show Your Ability shows. Everyone is welcome and free entry. Come along and try our range of products.

Waterfall walk today…