I created ‘To Aufinity and Beyond’ in October 2016 after years of feeling overwhelmed and alone. It provided me with an outlet and writing was and still is wonderfully therapeutic. Prior to blogging, I had little to no knowledge of Autism. I wasn’t even sure that it was the specific reason for our families struggles. Life was difficult and we needed to know why in order to change.
Whether some think it’s a good or a bad idea to share our journey so openly and honestly, the fact you must know is, having a child on the Autism Spectrum is not all a bed of roses and it needs to be stated. It’s not all sweetness and light. It’s flying sky high and crash landing multiple times a day. It’s feeling elated and empowered one moment but completely helpless and an utter failure the next. It’s celebrating ALL achievements and being there to pick up the pieces when it all goes wrong. Time and time again.
When my eldest was little, we had a fantastic social life, we went places and met with friends and family on a regular basis. All that changed when my middle son was born. All we were used to caused him such anxiety and distress that we began to isolate ourselves. I struggled to fathom why my friends had it so easy with their children and we did not. I’ll never forget those feelings of hopelessness and that was why I decided to share our journey.
I suddenly found myself comforted by the incredible special needs community and the more I listened, the more I learned. I began to understand the reasons why my son was unable to cope with every day demands and I developed the skills needed to keep him settled and happy day to day. We embarked on our journey to diagnosis which we finally achieved December 2017 after 2 years on a waiting list.
Having a child with special needs is often lonely. The fight for support never ends and it causes exhaustion and illness. I have suffered chronic pain since the beginning of our journey and I believe that is through continuously high stress levels. They say parents of special needs children have the same stress levels as combat veterans. With the support I have received from fellow SEN parents, life has changed so much for the better. If just one parent reads my blog and feels a little more equipped and a little less alone, I’m happy.
Some of our experiences can be distressing for some to read, for example my post on food aversions what it must be like to have a meltdown and my more recent post on SEN short term school exclusions. Unfortunately it’s more distressing to live it, when your child, who you love the very bones of, is at the heart of it all. Issues like these are happening to families across the country and we must talk about it. Brushing it under the carpet does a complete disservice to our special needs community. I am aware that not everyone has the strength to speak up. We cannot pretend it’s not happening and that is why I will continue to share the raw and truthful highs and lows of living life on the spectrum.
I am not qualified in Spectrum Disorders, I’m not a professional writer and I do not have a wealth of knowledge. I’m your every day Mum and I, like many families are simply picking it up as we go along. Learning everything we know through trial and error. We are our children’s voice, their advocate, raising awareness and encouraging acceptance where ever we go. We know them better than anyone else and we want them to achieve their full potential in life. To do that is a fight and we must be strong and find strength in each other. Who will if we don’t?
Always support, never silence and never ever give up.