Monday, March 15, 2010

Finding My Son

There seems to be an element of a persons soul that gets lost when a person cannot speak. I hope this does not offend people....I mean no offense. If you read on, I might be able to explain a little bit better what I am trying to say.

Just to be very clear; I am not saying that people who cannot speak have no soul. I am not saying that people who cannot speak are not real people. When people talk, I think that elements of their character, their personality and their essence comes through. It's in the small nuances....the way they say a word, or a certain look they have when they are speaking. Those mini facial expressions that we don't specifically notice and those tiny vocal inflections in their speech all communicate things to the person who is listening.

I feel like I am missing this with Erik. I feel like I am missing this part of him. I feel as though we have been 'cheated' out of it. For all intents and purposes, Erik is still much like a baby in his day-to-day life. He does not speak to me, and I don't know if he can understand what I'm saying most times. There are things that he definately understands. The things that are connected with routine activities and such. But I couldn't tell him a story and expect him to understand what I'm saying. I can't even expect him to understand when I need to tell him to wait, or that we are going somewhere different today....stuff like that. He may look at me bewildered, or he may just cry at such things. Sometimes, he just starts crying for no apparent reason. I can't ask him why. He doesn't understand what I'm asking him. And he can't tell me what the problem is anyway. Often, I am left trying to guess what has happened to trigger his irritation. Sometimes I can tell what it is. Sometimes I can't. This is frustrating for me. I wish he could just tell me. But he can't. It must be even more frustrating for him.

So I - we - are missing out on sharing the essense that is Erik because of these communication deficits. One day as all this stuff was going around in my head, I thought that it is stupid of me to think he has no personality. In fact, that isn't what I ever meant anyway...but that was how I was feeling that particular day. So I sat down and tried to think of aspects of my sons personality and character that I could see. This is what I found......

Erik is generally a quiet and gentle boy.
Erik likes sweet things....especially chocolate.
He likes fruit, rice, chips and spaghetti. He does not like vegetables or meat.
Erik likes dairy foods - but he won't drink milk anymore (we accidently stuffed that up).
He loves and prefers company to being alone. He adores his big sisters.
He likes to play chasey games with them, and peek-a-boo with me.
He does not like his baby sister right now, but is getting used to her.
Erik likes to go out, just about anywhere. And he likes coming home too.
His favourite place to go is our local shopping centre. But he also likes playgrounds and my parent's house.
Erik would never purposely hurt anyone, even when he was extremely annoyed.
Erik shows affection by leaning on people, or putting his feet on them.
Sometimes Erik will 'kiss' people he really loves and is comfortable with ...his version of a kiss is a small lick ('s cute, ok!)
Erik likes to copy his big sisters.
Chasey games, tickles, silly behaviour and certain animated characters make him laugh.
He also laughs when he is very happy or excited.
Erik enjoys nursery rhymes that are familiar to him.
He actually likes music in general, and looks very pleased when he hears a familiar song.

You know what...I could go on and on now. Many of these things are not much different to a normal toddler. On the other hand, there is much that a normal toddler does, that Erik can't or won't do. More about that in another post I think.

Anyway, looking more closely at these things helped me a bit. But I still look forward to the day - though I'm almost too scared to hope too much - when my son looks into my eyes and just says "mum".



  1. Hi Viv,
    We've met maybe once or twice before - I'm Gin, a friend of Lois's.
    I don't know if Lois has mentioned, but my son, Logan also has ASD - severe Autistic with mild mental disabilities. He was diagnosed almost 4 years ago after a 45 min session with the paediatrician and life has never been the same since!
    Your words ring so true for me and I've found them very inspirational.
    Logan is now almost 7. We moved here from NZ less than a year before diagnosis and didn't have any eligibility (for most public assistance) or the financial resources to get him the kind of early intervention or speech therapy he needed. To be honest, I felt like I had been dropped in a really deep black hole with nothing but a teaspoon to dig my way out and I didn't even know where to start!!
    Things are much better now. He still has no real speech, but he's one hell of a good SINGER! He has perfect pitch/tone and can't quite get his tongue around the words, but good enough so that we can pick out what song he's singing.
    I often used to find myself wallowing in all the negatives, and found it hard sometimes to focus on the positives...but there ARE positives, which you have already discovered, and LOTS of them!
    My boy is the joy of my life. He may not understand us 90% of the time, but 10% of the time he DOES and it's awesome! We can have the worst days at work, but one smile from him can melt all of that yucky stuff away...because a smile is so rare, and yet he gives us one just when we least expect it...and just when we most NEED it!
    His attendance at Northern Autistic School has done wonders for him..and US! There are so many things he can do now that we never even imagined him doing before he started school.
    One thing that has always helped us is making HIS normal, OUR normal. We don't even notice (until we get visitors) that almost everything we do and the way in which we do it is because of Logan. It's just the way its done. And it doesn't affect our household at all.
    I could ramble on forever, but I need to get back to work.
    Thank you for your blog. You are an inspiration!

  2. Hi Gin! Wow - thanks for your note! I'm totally flattered :D It is very encouraging, and I love hearing from other people about their experiences. (This is all still very new to me, and I totally hear you when you talk about the teaspoon in the black hole). Logan sounds like a real cutie! I'm rather pleased that you're enjoying the blog, and hopefully we'll be able to catch up more at some stage.

    Cheers! xx