Turning 10!

On New Years Day Isla will be 10 years old! Double Digits! With Isla being in a mixed age class at school, age becomes a little irrelevant. The only time I realise her age doesn’t match with her development is when I go looking for clothing. It still catches me off guard when the cute Paw Patrol nightie only goes to a size 7! Teen sizes start at 9 and we are both not ready for that yet!

We held her birthday party early yesterday. Being a New Year’s Day baby, most of her special people aren’t around so we tend to celebrate in the middle of December.  For many years this wasn’t an issue with her not understanding the meaning of birthdays or celebrations but now it is something she looks forward to for most of the year. Especially her chocolate cake made by Nana!

Yesterday I felt blessed. Isla had her friends from school and those we have met through various activities such as Riding for the Disabled. She was also supported by her sister and friend and cousins. She is very fortunate to have a group of girls around the same age who look out for each other. Their friendships may differ from the standard neuro typical type. They may communicate without a spoken word or have different types of conversations that have largely been learnt by scripting. Or they communicate by signing or a communication device such as Touchchat on an Ipad but there is no judgement or pressure. Most of all there is mainly love, hugs and caring amongst the kids but also the parents who just get it without anything having to be said.

The Worry Beast

Isla has been suffering from quite bad anxiety recently. Her calling out “Mum….I love you” has changed to “Mum!….just checking you are there” pretty consistently and constantly throughout the day. If she doesn’t get an answer straight away she quickly panics and becomes distressed. She has been worrying about walking into school that she has been doing without a second thought for the past year. Bo has stopped providing enough comfort in the night and she is coming into our room again. I am sure this is just a developmental stage and we are working on getting her to feel safe and secure again. Yesterday at her party all of this disappeared being around her friends and it was so heartwarming to see.

The Cusp of Adolescence

I am still working out how to deal and feel with Isla being on the cusp of adolescence. It does not seem right at all but is something I am going to have to adjust to. Having girls around the same age at school there will be a focus on self care and puberty next year and I am grateful for this. School for Isla is as much about life skills and personal development as academics.

Therapy, Learning & Support

I feel we are in such a great place at the moment and are covering most of the bases.

Isla loves all her extra-curricular activities and they are the highlight of her week. She attends Arts4Us (social skills/creativity), Gym Bunnies (OT/physio) and Riding for the Disabled (social skills & physio).  *

We also have recently started a year long programme through Without Limits Learning to help develop Isla’s Neuro Motor Immaturity. *

In the New Year Isla will be starting Special Olympics Athletics so am hoping she will enjoy that and will further help her development.

In addition to this she really enjoys her carer friends who come and visit her for play and socialising. This is one of the best things we have put in place for Isla and we are so lucky with have found some amazing young ladies who bond with Isla.

Finally we are 2 days in on a spelling and writing programme I am doing with her at home. Am so excited about this now Isla is willing and able to work on this with me and I think we are going to see massive progress over the holidays.

Thank you to everyone who follows our journey and I hope my blogs have helped you in some way this year.  Next year brings lots of changes for our family with Isla’s big sisters off to University and a new school and am really excited to see what  2019 will bring.

https://www.dancetherapy.co.nz/therapy_programmes/arts-4-us/

https://www.facebook.com/physiorehabgroupneuro/

(email neuro@physiorehabgroup.co.nz for more info)

https://www.rda.org.nzf

https://www.withoutlimitslearning.co.nz

http://www.specialolympics.org.nz/Contact-Us/Regional-offices.aspx

 

 

 

Published by Sara Stythe

Hi my name is Sara Stythe and I am a mum of 3 beautiful girls. This is a place to share knowledge, resources and information I have learnt along the way on this unexpected journey with our unique youngest daughter. Isla is missing a tiny bit of her 2nd chromosome (2q23.1 Microdeletion Syndrome, recently known as MAND) causing autism, epilepsy and development delay. If you would like to receive my new blog posts by email you can subscribe. Thank you

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