I have a love hate relationship with social media.
I love that I can keep up with what my friends and family are doing when I don’t have time to catch up with them, I love seeing people’s photos of holidays and events that I haven’t experienced so I can live through them and it really is amazing the things you can learn such as how to dehusk a corn on the cob in 3 easy steps.
However the most important thing that social media has given me is to be able to connect with other families with the same rare syndrome as Isla and also other New Zealand families with rare chromosome disorders who are experiencing the unknown future of their children.
When Isla was diagnosed with this rare 2q23.1 Microdeletion Syndrome I googled everything I could. What came up was quite frightening for us with terms such as severe mental retardation and intractable seizures but at the time it didn’t quite match Isla’s symptoms so i kept searching. I came across a Facebook group with a few members and felt so grateful we had some answers to what this syndrome would mean for Isla.
I was able to talk about my fears for Isla’s future and find out how older children had developed. I got advice on what testing should be done and what the baffling numbers from her microarray testing meant. I got introduced to doctors in the US specialising in researching Isla’s rare syndrome. We also have a place to celebrate small milestones which others may not fully understand, ask for advice on sleeping, medications, behaviour and therapies and vent on those days that are too hard with others who get it.
I am now our website administrator (http://2q23.org/) and moderator of the Family Support Facebook page. Our main goal now is to raise awareness which will lead to further research and help us find others diagnosed who are feeling very alone. I still haven’t found anyone in New Zealand but there are a few families close by in Australia.
By the time we saw the Geneticist (we waited for almost a year) I knew more than her about this tiny deletion at 2q23.1. She offered me the Unique brochure on the syndrome but little did she know that Isla was already one of the children to feature in it with her face on the first page. This was orchestrated through our Facebook Support Group and the contents of the brochure were based on our children.
Social media has also played a huge part in our recent and ongoing fundraising for Isla’s ADNZ Assistance Dog. Our story and plight have reached so many people that would not have been possible without the use of Facebook and the Givealittle page. I have been stunned by the number of donations from amazing people I haven’t met before. I must admit I have also enjoy getting handwritten notes and cards in the mail also.
I also love sharing Isla’s story and have had so much positive feedback from her blog and from her SimplyIsla Facebook page. I feel I am really helping educate people who have had no experience with autism. For those who do, I hope they can relate to some of our experiences and take something from it.
So with all these advantages of the internet and new technology what do I hate ? I dislike the the time wasting I do regularly trying to catch up with the latest news. I dislike Isla’s addiction to any device and wonder before this technology where her energies would have been spent…perhaps she would have developed another skill. I also don’t like how easy it is to use a device as a babysitter to make life easy for myself.
However the positives definitely outweigh the negatives in our case and there is no way we could have raised the awareness and found support without it.
…and for those wondering about how to dehusk a corn on the cob in 3 easy steps click here 🙂