Last week I asked the question, ‘How has having a child with autism changed you as a person?’ The response I got was excellent, and I have summarised some of those replies in the post ‘Changes’. But they were too good to summarise, so I decided to share them all over the course of the next week. I will shortly transfer them all to the blog page also called ‘Changes’. Thanks again to everyone who sent their intelligent, moving and inspirational comments. Below are two such examples from Mr C’s Mom and Lianne. More to follow tomorrow.
Mr C’s Mom:
How has having a child with autism changed who you are as a person?
Tough question, but I actually have time to reflect upon this, as I sit here at home on my sick leave… from stress related to our son’s latest development: extreme tantrumming. Don’t worry, we’ll get through it. Always do 🙂
He was diagnosed a week before his 3rd birthday, back in 2005. A surreal experience, really. Like a bad dream and you keep waiting to wake up. Then the intervention years. ABA, applying/begging for government funding, baby daughter under the autism microscope for 2 years, biomedical interventions, more behavioural interventions (Floortime, RDI), remortgaging the house to pay for everything, and then not a cent left to spend on any more intervening.
He’s going to be 11 in May. He’s adorable and has the best smile and freckles ever. I know I’m biased, but I’m also right. He speaks in incomprehensible riddles and even his own made up language. Repeats the same phrases over and over, the latest being, “You got an orange walrus.” Very difficult for the passerby to come up with a response to that conversation opener.
When he’s clear, he can answer some very basic and tangible questions like, “Do you like lollipops?” … “Yes!” … or “Where do you want to go?” …. “The mall store.” or “The lake.” He is addicted to water. Spends hours dunking cut up plastic toys in creeks, lakes, sinks, basins, bathtubs, and yep, toilets everywhere.
When he is content, the family is usually content. But when he is upset and raging, well… there’s no ignoring it, really. Glass gets smashed, appliances get dented, pictures come off walls, doors get mangled, shins get kicked, and lots of tears flow.
So how has this changed me? Well, I like to think for the better. When I don’t feel sorry for myself (I try to confine that useless emotion for only 1-2 times per year), I am more optimistic about the future than I was when I was a teenager and also when I was in my 20s. I am way less cynical and more forgiving than I was in my late 20s and early 30s. That’s pretty good, isn’t it? I am hopeful for new developments, but also grateful for Mr. C’s current abilities, his affectionate ways, his forgiving nature, his inability to lie, his trust in his mom, dad and sister. He can ride a bike and climb any tree (or fence) and will excitedly wade into the coldest water for a swim. The look on his face is pure joy.
He’s different. I’ve always liked different. That hasn’t changed.
Thanks for reading!
I feel that I have become much more patient, not only because for my son I have to as he needs extra time to process information he is receiving, but also since I have learned how difficult it is for him to understand the world he is living in.
I have learned that just because I, or someone else, just “get it” that he will not always necessarily too just get something. Infact nine times out of ten he doesn’t, and if you check something out that seems really really obvious it’s sometimes amazing to discover that he’s not “got it” and it’s fascinating to hear how he has infact got it…
Such misunderstandings as these happen on a daily basis, and I feel that I have changed by really slowing things down. I must help him to keep up, and understand what’s happening, and if I don’t he will not keep up and perhaps be confused by a situation or conversation which seems “obvious” to a non ASD affected mind.
Here’s an example. Social norms, and unwritten rules. Why wouldn’t you call an old lady “old”. Why would someone be joking if they are not laughing. Why would you not give your parents back money from your own money if they have bought your tea. Why do you have to call people titles such as mum, dad, gran, aunty, etc when other people call them by their first name…
The school environment is the most challenging, as you’re up against several teachers who unless they are trained in ASD, they don’t understand how their minds are working. For example, why would my registration teacher keep on yelling at me about being late; “Why are you late this time, I don’t want to hear your excuses!” When it’s not an excuse, why would they keep on saying it was excuses and continue to be angry?
Quite often people suggest that it is bad behaviour, and look for me to discipline him. If he does not understand a social norm, then how can he be able to be malicious and manipulate it? Most of the time I am able to use this new found level of high patience, but I must admit I am getting less of it for people and their sheer ignorance.
Life for us was always in the fast lane. I have always been of the opinion that he needs to be active and he needs to be meeting people and he needs to be out there in clubs and activities… And all the while by pushing for this I was actually causing an overload on his arousal levels which was in actual fact cruel. Life has changed and we are much slower now, and my son copes with not much more than his extremely packed day at secondary school.