Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them.
I had this post written in my head last week, I knew what I wanted to say but last night our world turned upside down again and I am left trying to express what I want to say to you all today.
Today across the world people are putting on blue and showing their support for loved ones with Autism, it is a label I still feel uncomfortable with, I think because the spectrum is so vast.
From low functioning to people who live relatively “normal” lives (I do hate this term) – Grayson is obviously on the low functioning end of the scale, as are many of his friends and classmates, as you walk in his class out of 12 children over 70% have an Autism diagnosis, some it is their only or main disability, but for others like Grayson it blends into a wide selection of problems.
I have family members who have functioning Autism or Asperger’s, I have lived with their little traits for many years and for me they just make them, them. Good or bad, they make them the unique individual they are.
It is a label that hurt many it effects, it is used as a nasty slang term and it can cause disruption to many, but in all honesty it shouldn’t, it just takes a little more understanding and education.
Education is key, teaching our children will stop the ignorance and promote inclusion and days like today help to promote that.
Companies help, like Cheeky Chompers, they listened and found a way to help mine and Grayson’s life improve and in turn it will help so many more after us.
One of Grayson’s autistic traits is excessive mouthing, when I say mouthing it is a term which means he puts anything and everything to his mouth and bites/chews. Clothes, small toys, metal objects, nothing is safe, even himself as only 2 years ago Grayson would bite his fingers till they would bleed, as his parent it was a hard fight but we overcame it, we would hold his hands, sit by him all the time, give him alternatives. He would go through a chew toy every few days, his little teeth are like razors.
Amy and Julie the founders of Cheeky Chompers created their Neckerchews in special needs sizes and they were released last weekend, Grayson has been road testing them this week and has also been asked to be the face of the new Neckerchews and we are truly honoured to help support them in their journey to create a product which helps children and adults with such disabilities. (I shall be doing a full product review next week).
Autism – such a simple word that causes so much concern and changes to people’s lives, my friend Toni shared a life changing post today, she writes a beautiful post to her precious son and how a label isn’t what makes someone the person they are.
For me this post resonated so much, month after month we receive new reports and letters which make you question your sanity, make you cry, or smile.
Yesterday that label of Autism meant I heard something that I never thought I would hear. I am not sure how to write it, whether I want to as it may have that break a leg effect.
Grayson’s Neuro rang us last night, since Grayson was 2 they have always been quite honest and stated “We probably will never find out what is wrong with Grayson, he is very complex”. I have come to accept that, I live with it and it doesn’t seem to upset me anymore 4 years on, we live in our little bubble, I hate that it makes it harder for Grayson to get the support he deserves, but is that label ever going to change anything, he will still be disabled, still be my superhero.
As he chatted about a plan to try to help Grayson’s very nasty recent problems, he asked if he could divert a little. I have some news he said, it wont help the current problems but it is very interesting….
I believe very shortly we will find out what is wrong with Grayson!
I nearly fell to the floor, where had this come from ? He went on to share with me that due to Grayson’s diagnoses of not only epilepsy but autism he has a plan, a little boy has been brought before him who although not as severely disabled said reminded him of Grayson, he said in 6 years he has never met a child who has come close but that day has happened and he believes this gene will show to be Grayson’s problem. We now just have to wait for the results from his DDD study and if that is inconclusive he said that is not a problem as he has 2 more studies he can put him on.
He finished with, I feel we will have an answer, this is all so very interesting!
I am living in a blur at the moment, this day was not supposed to come, to be honest I don’t honestly believe it will follow through, I think it is safer for me not to. How will I feel ? What will we find out ? Whatever he has is sure to be super rare, possibly still him being the only one, so will we learn much ? Will it actually change anything ??