I’d rather live in his world than live without him in mine

gladys

So one of my favorite autism mommies and party planning soulmates asked me to write a blog about something. I have never actually had a request before. Earl and I have had many “there’s a blog in there somewhere” moments, but no actual requests on a topic.
So here goes…Her son is one of Bryan’s best friends. He is also 13 and has good communication skills. His voice changed recently and he sounds like a man, it’s freaky! I noticed Bryan with a little Peter Brady “it’s time to change” squeakiness but he’s not quite there yet. Frankly, I can wait. Ok, back to the topic. She tells him, “I love you” and he says “thank you”. People love to tell us that’s the wrong answer or he’s in his own world, not her son per se, but all of our kids when they give an atypical response. One of our other friend’s sons says the most original things. A few years ago his dad said he was thirsty and needed to get hydrated with a drink. He said, I need one too, I’m lowdrated! These kids have a way of capturing thoughts and language that is very unique but they communicate their feelings. In my house the boys say when they have a cord that they will plug it in or plug it out. That makes sense really!
The point of it is we spend almost all of our energy forcing our kids on the spectrum to live in our worlds, physically, of course, but emotionally; that’s the challenge. I have mentioned before how much I have learned from reading Donna Williams’ books. She’s the 40 something Australian woman who did not speak before age 9 and now has written a dozen books and lectures all over the world. When I read her first book I literally had to pause to sob at times. I kept thinking, OMG, he’s in there; he understands everything we are saying and oh shit, he understands everything we are saying. She really opened my eyes to the idea that Bryan sees the world very differently and how truly tough it is for him every single day just to cope in “our” world. Can you imagine lots of people talking to you all of the time and it just sounds like garbled noise, but these people want a response from you? Can you imagine being asked question after question but you are still trying to decipher what the first question is? Can you imagine living with your family where you hear them talking about you like you are not in the room, because you literally are unable to respond but you understand every word they say?The key for us was to remember that while Bryan does understand everything, we must give him the time to process. Bryan’s biggest challenge is auditory processing. We just needed to learn when he was younger to slow it down. He was still answering the first question when we were on the third. Reading Donna’s books, listening to therapists, watching him, we learned how to approach him in his world. Over time he has caught up a little bit to us and we have watched him mature and grow.
Over the years when we have reached points of frustration, where Bryan’s language was so limited I often felt like saying, screw it, let’s just move to some island where it does not matter. Earl and I have had many heartfelt discussions about, how is it fair to force him to try and work so damn hard to live in our society when perhaps he shouldn’t? It’s hard to explain this but what you witness as a parent is watching your child struggle with every nuance. When I sit with Jason and we watch a tv show, no matter what it is at this point, he can get the jokes, the sarcasm, the inferences. Autism and inferences are not friends. The surface or literal interpretation is obtained but the rest must be spelled out. It’s not because these kids are not intelligent, it’s just that some aspects of body language and communication are not natural for them and are not easily taught by us. A simple phone conversation can be a challenge. In today’s world there are all kinds of scripts and social stories to teach our kids how to handle these exchanges, but as parents we need to remind ourselves that what is a natural progression of learning for our typical child is not the same for our child with autism. Some kids can’t read facial expressions, some can. Bryan can read basic emotions like happiness, sadness, anger. It took a long time for me to explain to him the difference between sad tear and joyful tears. I told him some are sad tears and the others are love cry. I can look at him now if I tear up and he says, ” you love me”. And of course I do.
One of the great things about living in “their worlds” is the slow motion. You get to keep them little longer. Most 13 year old boys would not want to snuggle with their mommies to watch a movie or kiss them. Although I am sure I am embarrassing to Jason, Bryan will hold hands with me anywhere and he is a bit taller than me so I’m sure it looks kind of cute from behind.
As many of my autism moms and dad’s know, it takes experience and battle scars to learn how to embrace their world. This is not something that comes in the first few years. The first few years are for intervention, the next few years are for learning, we are now in the teen years where we are planning for the future. The sky is the limit.

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4 thoughts on “I’d rather live in his world than live without him in mine

  1. Wow, Jane. This was AMAZING. I hope you don’t mind if I share it. XOXO

  2. When you and Earl find that island, please send me the map coordinates. The discussions you have about how fair it is to force our children into our society is exactly the struggle that all of us autism parents face. We feel it is our duty to prepare our kids for “life”, but is our society something all that wonderful to aspire to? Bigotry, racism, snobbery, greed, addiction, violence, crime, and hatred are not a part of the autism world. Morally, our kids are already perfect. But since that is unpopular, we try to make them just like everybody else. Perhaps those of us without autism should be spend our time trying to fit into their world instead. It’s a glamorous idea but hardly practical…hence, the struggle. However, those who pity us should stop. We get the incredible gift of seeing everyday what goodness really is and a glimpse into what a perfect society would look like. These are the things people with autism teach us. My wish for our kids is that more people would appreciate them for who they are and see the gifts they have to share.

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