Written for Firefly Friends
In this modern world it is relatively normal for people to share a lot about their lives on the internet. Writing and sharing about our journey raising a child with special needs is no different.
I have always enjoyed writing. It wasn’t until our daughter was diagnosed with a rare syndrome and autism however that I had a reason to. It all started when I set up a Facebook Page called Simply Isla.
I did this to share pieces of interest about this new unexpected world of special needs. This way Facebook friends who had an ongoing interest had the choice of following the page to learn more.
I initially started writing (or blogging) to report our progress when Isla got her assistance dog Bo. Those who supported us during the process of fundraising for Bo were really interested to read how they were getting on. I enjoyed writing so much that I continued and started to share more of our experiences. I created my website www.simplyisla.com as a more accessible platform to help and educate others.
Blogging what I am learning along the way raising Isla has brought some unexpected benefits.
Is an outlet for me
Once I start writing it can be quite surprising in what direction it takes. I may start writing on a certain subject which then takes on a whole new meaning as I analyse what I am feeling. By organising my thoughts on paper I find I feel less overwhelmed. It is very therapeutic. I encourage everyone to write their feelings down. When you are struggling with something even if you have no intention to share. It can really help bring some clarity.
Has been a help to others
Isla is a girl with a rare syndrome and autism. Medical practitioners are unable to tell us what to expect next and this can make you feel very isolated and alone. Our greatest resource as parents is reading about the experiences of others. Often we can relate or learn things from parents going through the same thing. Sometimes someone may be able to put into words what we are feeling or explain things in a way that is easier to understand. We can also use this information to share with other people to educate and create more understanding. Parents often tell me that I have helped them by writing my posts and that is really heartwarming.
I learn a lot
I always research when I write to make sure I have my facts correct. By doing this I have actually learnt so much. Sometimes by reading more on a certain topic I have changed my opinion on what I previously believed. It also has taught me the meaning of a lot of the terminology that is often used when describing the deficits that Isla has.
Education & Knowledge Creates Awareness & Acceptance
In this new age of increased tolerance of differences, it is a perfect time to educate others about those with disabilities. I feel it is my duty as a mother to help this cause. By speaking out I hope there will be more acceptance and opportunities created for our little people to integrate into society when they are adults. However while it is exciting reaching people, sometimes I feel a little embarrassed meeting people face to face who have read my deepest thoughts and insecurities.
Creates a sense of community and support
A lot of people use Social Media as a place of support when going through a tough time. It may be to celebrate events or to share experiences. Whether it is right or wrong, real life or not, I cannot deny getting feedback is satisfying. Having your feelings validated, progress celebrated and having conversations when feeling isolated makes me feel good. Now Isla is older she loves to read peoples’ comments on her photos and it makes her feel special.
Have a purpose
Being unable to return to work in full capacity it is nice to feel like I have some sort of purpose. By writing I feel like I am using parts of my brain that haven’t been used for a while.
Being in this technological age is definitely a helpful time for special needs parents to make our world a bit smaller.