Recently I have been asked a few things about my boys and if this blog is just about Asperger's. It really isn't, and the reason is that sometimes I don't want to be gobbled up by all things ASD. I live it daily - and writing about it daily is not something I'm into. I decided to write a little today, and maybe will do a bit more. Master S has another condition, a genetic condition called Beckwith-Wiedemann Syndrome. I started to write a bit about our story when he was a baby here.
A few days ago I wrote about a time when we stopped going to church because of our boys. I was questioned by a few why this was so - when they have many special needs children at their churches. I knew we were welcome, but the challenges were too difficult to go most places - let alone a place with flashing lights, loud music, lots of people and all sensory overload can be instigated by in the one place!
I guess the thing is, there is only so much one can cope with. Most children with Autism Spectrum Disorders also have a condition called Sensory Processing Disorder. The angst and discomfort of my children may have not been noticed - often it is masked when in public. It is typical for one with an ASD to 'hold it together' in public and let it all out once at home. For an infant, this is most likely different and the overload and anxiety can seem unexpected.
There was a time that we could not take Master J out of the house without thrashing, screaming and struggles. He would not walk on the ground if it was wet (although he did have shoes on). Master J would not let me buckle him into his car seat until he had counted all the numbers on the car dashboard. He would gouge his brother and sisters faces and rip their hair out. We would have to stop to read signs and count numbers as we walked. Master J would only eat white or yellow crunchy food.
Master S doesn't like to wear scratchy clothes. He would hide under a table if we went out anywhere. We would have tears on the way to and from anywhere we visited (apart from the friends next door or around the corner). All new places and situations heightened the anxiety and trauma.
For children who cannot articulate this - how hard it must be. This is often the case, because pragmatic skills are different with an ASD. Then Master S and his tongue reduction - all the more difficult.
So mix this with trying to run a household, raise a neuro-typical daughter and realise your husband is most likely too on the spectrum. What fun we had! We had some great people helping our kinder teacher, phych, early intervention - and their care got us through. It was really hard. I had a grief that my children were so different to others. If we were out places, people often stared or advised my parenting skills needed to be firmer (thanks for that). But now it is easier. The boys are now 7 and 10. We still have some hard days - but not like back then. I have two very different children.
I hope that gives some hope to a couple of people who may be newly experiencing these challenges. Some of you may think blah, blah, blah - I challenge you to educate yourself too, to be a friend to someone you may encounter; or that child you see in the kinder room who is kicking a table or licking the window, who says something completely obscure to you.
Now I'm off to make something new for the stalls, shop and upcoming markets! Stay tuned!
Love Rach xx