“It’s a a guessing game for us…”
My name is Lisa and I am writing this on behalf of my 4 1/2 year old son Kaiden.
Kaiden is my second child: he has a 12 year old sister and a 2 1/2 year old brother, both of whom are neurotypical kids.
I knew there was something different about Kaiden from about age 5 months. By the age of 1, I knew for sure even though I was constantly told he was fine and would develop in his own time. By about 14 months he was diagnosed with global development delay, he did not walk until he was 2 1/2 years old, and by age 4 we finally got an ASD diagnosis.
Kaiden is a beautiful looking boy with long blond hair and eyelashes that women pay hundreds to copy. He has the most beautiful smile.
Kaiden has no verbal communication and does not sign, point etc. It is all a guessing game for us as to what he wants. He needs to be fed and have his nappies changed and is developmentally around 15 months. Kaiden also has epilepsy – absence seizures.
I cannot begin to imagine what it is like for him in his world. He headbutts, bites, screams, pinches, kicks – all out of either frustration or pain. He wakes most nights and can be up for hours either sad or happy.
It is hard for the whole family and our daughter does not like playing with him as he will bite or grab her hair. I was also told kids at crèche don’t want to play with him and the staff don’t want to work with him. It breaks my heart.
I knew nothing about ASD nor had I heard of it until Kaiden entered our life. I used to be one of those girls, when hearing a child screaming, tantrum or a meltdown at the shops, that was never having a child act like that! Well I can say I have had many of those meltdowns from Kaiden. Yet it was not going to happen to me…
I realised that there is not enough understanding out there on ASD: we recently took Kaiden on a holiday on a plane. The trip didn’t go well on the flight there orback. On our flight home a guy and his family were so angry over Kaiden’s screaming that when the stewards apologised and explained that the parents were doing their best and the little boy had autism, his response was, “So I have 5 *#!$% hours of this?”.
I don’t know what the future holds for Kaiden but find it personally overwhelming as I ask myself will he have friends, will he talk, will he be able to feed and dress himself, will he move out of home, will he marry and have a family? I try to focus on the here and now but have days where I can’t.
I do try to remember the things he can do and not what he can’t do. Every family has their own journey and I know that it is a very long emotional journey.
I want to do whatever I can to help kids with ASD.