“What’s your name?”
“Oh – he’s not a talker”.
Forced smile. Remind myself – they are just being kind.
That’s usually my standard response.
Sometimes it’s misinterpreted – fair enough really, I doubt they’d want the whole story, nor can I be bothered to tell it – and followed by another question. Until I am clearer and say he can’t talk. Other times it’s an instant conversation stopper. Stranger’s eyes glaze over. Semi sympathetic smile offered as they regret asking. I pay for our shopping as quickly as possible (it’s almost always at a supermarket) and make a sharp exit.
Having a non-verbal 4 year old – and our non-verbal is the completely non-verbal kind – is tough. As he gets older, Brody makes a lot more noises (great for attracting people that like a good old stare when you’re out and about) and a few sounds. We have mum (sometimes I do think he may mean me), ma, ba, la and most recently da. The past year has brought us some wonderful Makaton signing – we wave and sign more (funnily enough food was the motivator for that one), duck, bird, yes (unfortunately not always in context) and please/thank you (when it suits him – naturally). We are beyond grateful for these signs, but the lack of communication; understanding and speech is really hard on the heart. Not to mention frustrating for everyone.
Silence is not golden.
I should add we high five and fist pump, which is awesome. Not such a good look though when your child doesn’t understand that his extended fist isn’t automatically recognised as the pump variety to strangers. Yep.
Being non-verbal isn’t like The Little Mermaid. There isn’t always some magical solution. Take away your child’s voice and you can imagine how much more complicated life gets. Lots of things that parents take for granted are longed for. I love you’s, birthday and Christmas lists, endless questions and conversations about favourite things.
When your child is unwell, the whole situation is magnified. By a kazillion. Oh man, people have no idea. Your child is moaning and upset and the guess work is suddenly beyond overwhelming. You feel like an instant failure. The.Worst.Mum.Ever. Because who doesn’t know what’s wrong with their child. Is it his tummy? It must be tummy ache. Maybe it’s a sore throat? Can we see any marks? Has he hurt himself?
Then the panic sets in. Do I need to call an ambulance? Should we be packing a hospital bag and calling the Children’s Ward? What if this is something serious? Is a seizure coming? Of course, it’s usually in the middle of the night too (why is that?).
Sometimes, it does involve out of hours. You’re right to be worried and something is amiss. Other times, you go to the hospital – explain for the umpteenth time your child’s story, reiterating that they can’t answer the Doctors questions – and they find nothing is wrong. Then you feel like a melodramatic parent. Then there are the times when a few hours pass or the morning comes and it’s like nothing ever happened. He is fine now.
Non-verbal parenting involves a shed load of guess work, a whole heap of patience and endless boxes of tissues. You long for that first word, to hear your child’s voice and to have a conversation. Not being able to speak isn’t the same as not having anything to say after all. You can feel your child’s frustration at not being able to tell you what they want or what is wrong. It’s heart breaking.
Like every SEN mum – although it’s not always easy – I try to be positive. Brody speaks in so many silent ways. His actions speak volumes. When he is happy he smiles and claps. His laughter is electric and can light up the darkest room. Silence isn’t always empty. Some say it can be full of answers and speak when words can’t.
Oh what I would give for some words and an answer back though…
Great post, so true! ♡
Thanks Kate xx
This is so true and beautifully written. It echos my situation so well
Thanks Karen. I’m with you all the way.X
Oh Laura, such a beautiful and moving read. I’ve only just comes across your blog and i’llbe off to read more but for now I wanted to send lots of love and I hope blogging offers you the supportive outlet it’s given to me. Well done.
Thanks Ruth. Definitely therapeutic. I’m sometimes a bit torn between feeling like I’m sharing a diary to wanting to shout it all out. Perhaps normal? Love back to you. X
This has brought me to tears. It absolutely mirrors my relationship with my 5 year old son. I’m just trying to focus in all the little positive steps he makes. Sending you loads of love. X
Thanks so much, although sorry to make you cry. Power in numbers. We’re in this together ? Lots of love back. Thanks for commenting. X
My boy was non verbal up until he was 5 1/2 years old ….. I know the stares very well but if there was one thing I would say is never give up talking to him or taking absolute delight in the gestures he does make he is talking just in his own language and never ever give up hope xxxx
Thanks Kim. He’s a beautiful boy and his gestures are brilliant. We can’t imagine him ever talking, but who knows maybe one day. Glad your son found his voice. That’s lovely to hear. X
I always say the worst part of autism is when my child crys and i have no way of finding out what is wrong. When i can not help my own child, how cruel is that? It is multiple emotions all at the same time, the one that comes out more is anger and frustration, then sadness. However, yes i do agree he finds a way to communcate, i have been teaching him gestures, which helps. Let us never give up on our children, they will surprise us.
Thanks Carmie. Hard when they’re unwell. Amazing how you can learn to read them without speech though. X
My little boy didn’t talk until he was 17. He is now 24. He talks all of the time. Mostly he wants me to do things for him. I try to remember the days that I longed to hear his voice when his chatter drives me up the wall. Thanks for reminding me to be grateful.
Thanks Ann. Great that he found his voice in the end. X
So well written – thank you.. all the best to you ? Love from Deb – Nan to 4.y.o Indi ?xo
Thanks Deborah, that’s really kind of you to say. X
Beautifully written. I can relate I have a 7 year old non verbal ds. We started a method called RPM (rapid prompting method) about 1.5 years ago & it has been life changing. DS can now point to letters on a stencil to communicate. I was sceptical at first because we have been teaching him to use a communication system since he was 4 without much consistencey. Please look into RPM I wish we would have started earlier with it 🙂
Thanks Cindy. I will look it up. Always good to hear of new things to try. Great to hear it’s working for you. X
I hear ya sister! My 4 year old went through a whole bone marrow transplant last year non verbally! Chemo, nausea, mucositis, this kid is a real trooper so I get exactly what you’re saying. Every word! Thanks for sharing your story xx.
I totally get it. There is hope. You might like this post I wrote, it’s about the first time David signed ‘hug’ xxx
Totally understand. The slightest hint of communication is a sudden flurry of excitement here. You might like this post about the first time David signed ‘hug’ http://rainbowsaretoobeautiful.blogspot.com/2016/01/why-all-forms-of-communication-are.html
I heard recently that Einstein didn’t say a single word till he was 5, when asked why he said he was thinking. My son has delayed speech and I had concerns but he’s catching up now, I guess they all do it in their own time.
Hello – my son had his own language and was incomprehensible to most people til about 6, now with lots of speech therapy, he is pretty understandable. But this isn’t always the case – some people develop speech really late, some never at all, but can find other ways to communicate. It’s always worth believing that your non-verbal family member can understand more than they can say (my son has surprised me with memories from before he could talk about things that I said to him when he was little). Have you been told about assistive communication technologydesigned to help/inspire communication in non-verbal children? Sue Fletcher-Watson is the UK expert (worth googling), and there’s some great American bloggers who are mums with non-verbal children who use assistive tech (basically iPads with Apps), including http://www.youdontsayaac.com/must-reads-for-aac/ and http://niederfamily.blogspot.co.uk/p/our-communicationaac-journey.html and this is a pretty good resource too http://www.speakforyourself.org. And on the communication with medical people issues, some excellent resources have been created, such as the Books Beyond Words series that explain health problems in pictures. Visual pain scales (smiley to sad faces) and the videos and photo-stories on the Easyhealth site (designed by charity Generate) can also help non-verbal communication. Good luck!
So well written, you are a true inspiration my dear!
Brody’s mummy.. Much love goes out to you and your son. My son also is non verbal and has epilepsy. He was diagnosed with a rare genetic disorder. Your story is so similar to mine and i would love it if we can be in contact. People ask some questions like I don’t know how to respond like the talking. I just burst into tears. Haha… The questions are getting harder for my 5 year old daughter why her 1 1/2 year old brother doesn’t talk or walk… This life isn’t easy. Especially in a small town where there isn’t a lot of treatment. Thanks for your story and definitely going to follow your blog.. Thanks ☺️ With all my love. God bless
So sorry I am only just replying! Thanks for your comment. Here to talk any time. Not easy at all. Big hug.
You’re so cool! I don’t think I have read through a single thing like that before. So great to discover another person with a few original thoughts on this topic. Seriously.. thank you for starting this up. This website is one thing that is required on the internet, someone with a bit of originality!|
Just reading through some of your older posts, this is so true! Even at hospital appointments – every nurse / new doctor for some odd reason doesn’t pick up that he’s non verbal – you’d think it would be at the top of the notes, especially there of all places! It’s so tiring having to explain it over and over again – it almost feels like you’re downplaying your sons capabilities by reducing it to a few words “he’s non verbal”.
I remember when the nurse was waiting for him to come through from General anaesthetic, she came through and said to me “He’s awake but he’s not saying much, can you come through to encourage him” It’s almost comical at times, very, very frustrating though. Completely agree with the backchat bit, it’d be like all my Christmases had come it once haha x