Our daughter Isla has a rare chromosome disorder 2q23.1 Microdeletion Syndrome (aka MAND). This causes autism, development delay and epilepsy.
We are in such a good place now with Isla. Ten years old seems to be the magic age where everything has come together for us.
No she hasn’t just become neurotypical all of a sudden. She is still our quirky, sweet girl with absolutely no filter. She is also developmentally behind. It just seems she has achieved so much lately and hit so many milestones. It is so encouraging!
There are many things that have contributed to Isla’s development over the past 10 years. I will aim to highlight the game changers from when we were first diagnosed. I have written about things as they have happened along our journey on my website www.simplyisla.com. Have provided the links for quick reference to each blog post if you are interested in learning more.
1. Early Intervention
This came in the form of speech therapy for Isla. We started the process at 2 years old and therapy began at around the age of 3. We attended the Hanen More Than Words course and learnt a bit of Makaton Signing. These were both worthwhile providing us strategies to help cement her learning at home. Her motor skills didn’t seem too different from a normally developing child in those pre school years and we didn’t really receive help for these until at school. https://www.simplyisla.com/tipstotalk/
2. Moving from Mainstream school to a Satellite Class
Mainstream schooling wasn’t the best place for Isla to learn. She couldn’t keep up, couldn’t keep still and it wasn’t the right environment for her. She spent most of the time out of the classroom with her behaviour reflecting her inability to cope. Moving to a Satellite Class where she felt competent, more included as was structured for children with additional needs, was the perfect fit for her. Her special teachers and aides have really helped her become the girl she is today. https://www.simplyisla.com/mainstream-school-vs-special-school-satellite-class/
3. Getting an Assistance Dog
We received our loveable Golden Lab, who had been trained for autism, when Isla was 7 years old. He is a tremendous help in letting Isla access the community and walk to school. He helps her sleep better and is a constant, non judgemental companion. https://www.simplyisla.com/how-an-autism-assistance-dog-helps-our-daughter/
4. Her Carers
For the past few years we have had some wonderful students in their last year at school spend time with Isla in our home and take her out on outings. This has been great at helping Isla with her social skills and teaching her ways of keeping herself occupied. As well as giving mum a break! This has been one of the best things I have put in place for Isla and our family. https://www.simplyisla.com/islas-special-carer-friends/
Putting Isla on Fluoxetine (an SSRI otherwise known as Prozac) has been quite life changing. We were initially prescribed this for anxiety. Her fear of ice, for example, was causing her to have break through seizures. As well as helping the anxiety, we noticed her reactive behaviour, resulting in tantrums and crying, became less and less.
As this was a gradual improvement I thought she had just grown out of this behaviour. However it became clearly apparent the positive effect her medication was having on Isla’s behaviour when she started growing out of her dosage. At at the beginning of this year, as well as seeing huge separation anxiety, she had become withdrawn, defiant, irritable and started over reacting and crying every day. I must admit I struggled with the decision to increase her meds as I wanted to believe she didn’t need them to progress. However within a few days of increasing her medication she was a different girl. We had our happy, engaged, chatty sweetheart back. https://www.simplyisla.com/medicating-autism/
6. Holiday Club
We have some truly special people in our lives. Isla and some friends are taken on adventures by 2 “school holiday angels”. Isla would struggle to attend a regular school holiday programme but this makes her feel part of a social group. It also exposes her to a lot of activities she would not normally do on her own without her peers. There are many places we can now go after she realises they aren’t so scary after all.
It took me a while to find them but we now have the perfect combination of after school activities that cater for our kids with additional needs. Without her knowing it they are all different types of therapies teaching her new skills while she has fun. We do art therapy, OT based therapy, Equine (horseriding) therapy and next term we are starting music therapy!
Isla also works with a Neuro-Developmental Therapist and is currently doing a Reflex Stimulation and Inhibition Programme.
She also has OT/physio/speech and language goals at school.
Isla has lots of friends she has met through school and her activities. They are caring of one another and non judgemental and their friendships are so important to Isla. She never feels like she is missing out on anything as her friends (along with her carer friends) provide everything she needs.
Isla has awesome sisters that adore her but keep it real. A father that would do anything for her and reads to her every night and a Nana that is her special person and is like her second mum. Her extended family are all supportive and accepting of Isla. They have all shaped her into what she is today. She has also made me become a better person and has taught me so much.
10. No Devices
This has been a recent but huge developmental leap. We have been device free for a few months now and the changes have been unreal. She is more enthusiastic about pretty much everything now we don’t have to compete with devices. She is now participating in the real world rather than a virtual one. https://www.simplyisla.com/the-big-screen-fast/
Originally written for Firefly Friends