Let silent words be heard

My children live in a different world to me. They have autism. I don’t. They order the world, understand language and process sensory feedback in an entirely different way to me.But because they were diagnosed at just 3 years and nine months and 4 years and 10 months old they were unable to tell me much about their world. So I took it upon myself to learn about theirs.

I bought so many books about autism. And read them all. Around 99% of them were written by people like me who do not have autism but who felt they understood what my children may be experiencing. I went to training courses about autism. They were all run by people without autism too, trying to explain something they have never lived with. But I did find out something very early on: no two people with autism are the same. I already had that figured out with two very different children both with the same diagnosis!

I wanted to know what it was like for my own two children. I wanted to know how best to help them and teach them. I wanted to be part of their world.

So I watched them. I sat with them. I held them. I listened to them even when it seemed like to everyone else there was nothing to hear. And everyday I prayed that one day they would open up to me.

This week my six-year-old explained to me a little about why she never spoke a word in nursery for the two and a half years she attended. Speech and Language therapists diagnosed selective mutism. I had no idea why my daughter was speaking so fluently at home but not at all outside of the house.

It was relaxed, accidental, and natural. As I read a bed time story to her and read a line that said ”Hi Tony!’, called Topsy, but her voice came out not quite loud enough’ (Topsy and Tim start school by Jean and Gareth Adamson). Naomi suddenly opened up. She knew how Topsy felt. She went on to share how that happens to her all the time: She wants to talk but the words just won’t come out of her mouth, how it was like the words just stuck in her throat, and sometimes her mouth could not even open up. She was scared and worried that she would get a row. She was shaking because things were new and different and she seemed so small. Her voice was scared of new people and liked to hide and sometimes she was sure she was talking because she could hear herself but now she realises it was just her brain and not really her mouth. She was worried that once her voice did come out she may not be able to control it and it might never stop. It was like someone jumped into her mouth sometimes and just stole away all the words she was trying to say.

Here I was suddenly getting a glimpse into her world. We had read this story so many times yet tonight she suddenly realised she could identify with one of the characters. And more than any book, or course, or professional input, I got to learn so much more about my daughter, her anxiety, her selective mutism and her autism.

Naomi’s twin brother is totally non verbal. I may never ever get the privilege of a night like this with him. I may never know why he bites himself, insists on mashed potato and gravy at every meal, only ever wants to wear a red school jumper or what keeps him awake all night. So I will have to learn to listen to him some other way.

Last week there was a social media campaign to support and bring awareness of non verbal children, especially those with autism. You could say that for a long time that applied to both my children, but for very different reasons. When Naomi heard about it she was desperate to be part of it. For her brother. But also for all those other children who like her have struggled to communicate with selective mutism.

I struggled to write this week. Writers block? Maybe. Or maybe I just needed to be quiet for a while and let those silent words be heard.

My children live in a different world to me. Both of them want to tell me what it is like. Only one of them can now explain that with words. The other is silent.

But let us listen. Let us put our fingers over our mouths to keep them from speaking. And let those who are struggling have a change to tell us in whatever way they can. Let us hear from our own children. Let us hear from those who struggle:

Let silent words be heard.image

Advertisements

5 thoughts on “Let silent words be heard

  1. Just beautiful Miriam. Reading this, I was feeling so many emotions. How wonderful that Naomi could say how she felt and why. I hope one day your son will do the same. You’re right about reading books and going to conferences etc. One cannot learn about our children from a book or a
    person, we need to listen to them we need to hear them. I’ve been saying this for 22 years. My son who is now 22 was non verbal when he was little. He started big sentences when he was around 5/6 and sometimes they were unintelligible. He got there though. Now he is a very eloquent speaker and when he’s readu he can have a lovely conversation with you. But it will be on his terms. He does still mix up tenses. If I try and correct him, as in that’s future tense, he ends up getting frustrated and I then need to rephrase my words. Lol he’s a great lad and I’m very proud of him. Thank you for sharing your amazing story huni. Xx

    Like

  2. I have NF1. Was diagnosed at 25. I’ve had no treatment other than a few small lumps removed at the GPs. I can talk on the phone to anyone for hours but put me in front on a room of people and my brain works but my mouth doesn’t wonder if it is something similar?

    Like

  3. Miriam your writing is awesome. You should get Naomi to write a blog in her own words about what she enjoys and why. I reckon she will be an eloquent speaker.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s