I have tried not to let it define us or even change our lives, but it has. Some days most of my conversations will revolve around it and most the time I welcome it but other days I want to run away from the conversation, the facts and the realisation but I cannot. I once said I felt like a fraud using the ‘Autism’ word without actually having an official diagnosis, but that is behind me now as realisation kicks in.
Dylan is a boy with special needs.
These needs are constantly changing with age, and we are learning to adapt to these needs. He cannot communicate so we have to do it for him, and he has no understanding so we have to try and help him and others understand with most of it being just a guessing game. He has no awareness of anything, and this mostly applies to dangerous situations, he does not know that stairs can be fallen down or that fast moving cars can hurt you. We can go into so much more detail and cover so much but to sum it Dylan is now a boy with special needs.
We are telling people about it as openly as you would share your mints. We use the word ‘Autism’ as if it instantly sums up Dylan in one word and we then do not get the questions or the stares, we get instant understanding. After I say those words I feel like this weight has been taken off my shoulders and that I can get on with things. A classic example is when we went out for breakfast to Frankie & Benny’s and were seated at a booth, Dylan did not want to sit in it and started flapping his hands. The husband had sat Charlotte down in her highchair, and I was at a lost what to do with Dylan, I still forget sometimes that I need to think in advance about what I am going to do in situations like this. The hostess was stood there, and the words just slipped off my tongue ‘he has autism’. Right there I explained what was going on with three words and her response? The look of total understanding and she instantly went and turned the music down. Did I feel guilty for using that word? No, I was relieved that someone understood that the loud music may be a trigger and that he was sat on my lap towards the end of this booth for the whole of breakfast because he was unsure and no matter what we said or tried to do he just didn’t understand the environment we were in. There were no complaints when we brought out our food (apple) for Dylan because he would not sit and eat the beans on toast like his sister was, nothing on the menu would have appealed to him.
I have even taken to using the word on social media, when wanting to share our experience like I am doing right now, having my rants, talking about our struggles or sharing a photo. I will tag it #autism so that I can instantly put a thousand words on that moment or experience in just one word. I can find and relate to other parents of children with Autism; they can find and relate to me. It is like tagging your coffee as #starbucks because you want people to know it isn’t any ordinary coffee, well Dylan is no ordinary boy, he is our boy with something extra special about him.
It was not clear to us when he was born that this was the path we would be taking with him when signs were starting to become increasingly obvious I was in denial. I am still on the path of discovery, as is Dylan and his Sister, Brother and Daddy. Our lives are adapting around him, and he needs to be the first thought when doing anything because Dylan is the one with special needs.