Five Myths About Having A Non-Verbal Child

I am a parent of a non verbal child. He has always been that way and possibly always will. It’s our ‘normal’, so much so that I often forget when others look at my son or ask him a question that they have no idea he can’t speak. Sometimes I want to tell the world everything about him, because he can’t do so for himself. Other days I want to keep everything about him private and locked into my heart because…well mostly because people, sadly, can be very ignorant.

I know people don’t mean to hurt and they are mostly just curious and well meaning about life with my beautiful son but there really does seem to be so many myths about what it is like living with a non verbal child (or adult). Here are five of the most common ones I have had said to me:

1. “Your house must be so much quieter than mine!”

This one doesn’t offend me but it does make me laugh. Just because a person can not speak does not mean they can’t make noise! My son can scream so loud he frightens the birds away for miles. He makes a lot of noises both with his mouth and with his body. He cries, he laughs and he shouts…it’s just words he can’t make, not noise! He is at least ten times louder than his very verbal sister!

2. ‘You must have no idea what he wants then if he can’t speak?’

This one makes me realise just how much emphasis we seem to put on spoken language when, in fact, it is actually only a small minority of what we as humans use to communicate. I carried my son for nine months, when he was a newborn baby I interpreted his cries when he was hungry, tired or wanted comfort. Nine years later and I still know how to interpret his actions and needs. I can follow his eyes, see his face light up in laughter or he can lead me by the hand to what he wants. He is an incredibly gifted communicator, actually more gifted than many of us who have become complacent in our use of spoken language. He uses google street map to take me to the doctors when ill (you can read more about that here), he uses photographs of places we have been to to request to go again and he uses objects like the TV remote to say he wants to watch TV. He may not have speech but he can still get his message across. It is us who need to learn to listen not him who needs to learn to communicate.

3. ‘Give him time. One day he will come out with full sentences!’

I know people want to be positive and offer hope. I get that. I understand that people don’t understand severe autism, global delay and learning difficulties fully and base their experience mostly on what they have read or heard from the media or friends. People don’t mean to hurt me when they say this, but it does hurt. While my heart would love my son to speak to me suddenly in sentences, with the exception of a miracle, that isn’t going to happen. There are only three recognisable vowel sounds in his ‘vocabulary’ at almost ten. He has ‘o’ (sounded out like awww) and ‘mmmmm’ and ‘ahhhhh’ when eating but these are considered so infantile his expressive language has been assessed at approximately 6 months old. It has remained at this age for three years with no signs of any improvement.

As hard as it is for society to accept; there are people who never develop speech and remain non verbal all their lives. There is offering hope to people and then there is false hope. The latter can destroy and damage so much. My son MAY say some words one day but the reality is he is more likely to remain non verbal. I can accept that and I hope one day others will too.

4 ‘I bet he must be so angry and frustrated all the time.’

I can understand why people would think this. Of course, like any other person, my son has times of frustration and anger. Mostly these, like any other 9 year old, are actually because he can not have his own way rather than directly due to his communication struggles. He IS understood and he IS happy. My son has never known any different. It isn’t like he had speech, became reliant on it like us, then lost it. He has always been non verbal and he has found his own way to communicate on his terms. If people take the time to get to know him they can tune into his needs and wants fairly quickly. Out of everyone in my family he laughs more than any of us so his inability to speak certainly isn’t making him angry or frustrated all the time, anything but!

5 ‘That’s so sad. You must be so heartbroken all the time.’

While it may be annoying having your child whining or nagging for something when you are busy, or asking a million questions all the time, how would you feel if you never heard your child say ‘mum’? Of course I get sad sometimes, I would not be human if I didn’t. There are moments it catches me off guard, like when I see my daughter singing Christmas carols or when someone asks me what my son wants for Christmas and he can’t tell me. On the other hand I have become much more grateful for the times my son climbs on my knee at 9 to show me something on YouTube he likes, or the times he squeezes me hard and still wants me to lift him up even though he is almost my height. When he takes my hand as he climbs out the car or rests his head on mine, he doesn’t need words to say how much he loves me.

Yes a part of my heart feels the pain of never hearing his voice but I am anything but heartbroken all the time. I have a bond with my son which is like nothing else. Silence says everything when we are just sitting together and those moments refresh me whenever I need it.

There are so many more misunderstandings about children like my son. Sometimes I deliberately don’t tell people he can’t talk because they immediately seem to stop talking to him just because he can’t speak to them. That upsets me, but more importantly it upsets my son.

I have had other parents tell their children to avoid my son out of fear that perhaps his non verbal status is somehow contagious. People generally equate non verbal with ‘not with it’ which could not be further from the truth with my son. In fact if he ignores you it says far more about you than him!

Being non verbal is not holding my son back, society is.

It is ok to not know about something you don’t have personal experience of but please be willing to learn.

I am a parent of a non verbal child. I don’t need to be his voice because he is perfectly capable of making his own needs and wants known in his own way: He just doesn’t use speech to do so.

My friend and fellow blogger Chris Bonnello hit the nail on the head with this (to see more of his fantastic memes and blogs see http://www.autisticnotweird.com)

25 thoughts on “Five Myths About Having A Non-Verbal Child

  1. How so true this is! My son is so loud all the time! I love how you’ve said you’ve interpreted his cries before it was accepted to be able to talk, society doesn’t get it unfortunately Issac gets his needs met without spoken language sometimes wouldn’t it be nice to get things without having to talk, for once for someone to actually listen to you without the need for words. The place would be a much better place if everyone listened to everyone.

    Liked by 2 people

  2. This is a brilliant post Miriam and will enlighten many I’m sure! Communicating is definitely not all about speech, and as parents we learn to read our children very well – if only we had time to give everyone else individual lessons in our children, eh?! x

    Liked by 2 people

    • I have so much about Isaac written down. Respite has helped as I had to make lists for them. School too. It would be great if people read the stuff first..,have to say sadly education are the worst for not bothering but Isaac soon tells them when they don’t get it right and his confidence and stubbornness will help me feel less worried about him as he gets older. You get it wrong and he will soon make that apparent haha.

      Liked by 1 person

  3. Ben had about 6 words until he was about 5-6years old. He’s also 9 now and although he has more words, most of them are scripting so unless someone knows the script or the reference, they still don’t understand him.
    People are able to figure out a newborn’s wants and (not to compare) also a dog or cat’s wants and they don’t talk either.
    This is a great post!

    Liked by 1 person

  4. Love this. And I love it when people outside the family talk to my kids without expecting anything back. The kids know. if they ignore someone I tend to trust their instinct. My older son sings beautifully but can’t converse. Hearing him sing makes my day.
    Communication comes in many forms, you are so right. They might not have the sounds but they have the right to be heard

    Liked by 1 person

  5. Your bond sounds incredible and your post highlights that your son does not need a voice to be the person who he is today. Beautifully written – it brought a tear to my eye reading about your love for your son x

    Liked by 1 person

  6. Perfect!!! You stole the words right from me, my son will be 7 in August and he is non-verbal! He has GDD and Brain Damage. I pray to hear his little voice one day, but just like you I am thankful that he has became the sweet loving little boy that he is, wheather they find their voices or not they are true miracles! Good luck to you and your son ❤️

    Liked by 1 person

  7. Sometimes it never ceases to amaze me the thoughtless and insensitive things people can say. Thank you for sharing an insight in to your lives, I think it’s so important that we are open and honest so we can learn about each other, as you have so beautifully written, communication is about so much more than words.

    Liked by 1 person

  8. This is a fantastic article. One of my 4.5 yo twins is completely nonverbal, but communicates his wants, needs, and his feelings in so many other ways. Thank you for sharing your world with us. I’m sharing this on my Facebook page, Not an Autism Mom. ❤❤❤

    Liked by 1 person

  9. Thank you for this post. My 4 1/2yr old son is non verbal -we’ve not had the autistic diagnosis but he’s got other medical conditions. I always say if anything hes vocal not verbal. I know our family isnt the only 1 going through this but there are days when I feel we are when familys friends or strangers kids are yacking away & our eldest is sat in silence. I worry about his independence in & acceptance from society.

    Liked by 1 person

  10. This is a great post! I wouldn’t say anyone of those things to a parent of a non verbal child but I know people do. I hope this post gets to them so they can be more educated in future x

    Liked by 1 person

  11. #Autism is a serious disease
    I am a person with NF and autism just like the blog writer children. i live in the USA and there are foolish liberal special education teachers that believe computer augmented speech devices are useful despite the fact that most of those using such devices do not have the capabilities to understand what the words listed on the word board mean . Do not get me started with PECS. I went to speech therapy until age 12
    #Early intervention works.
    Regardless a loving mother is better than any ‘intervention”

    Liked by 1 person

  12. My daughter is 25 and I am just realizing she understands more than I realized. If I give her a full sentence command like put you shoes on she will do it. I realize that she holds back and wait for you to do it for her.

    Like

  13. I love your article. My 31 y.o. is the same way(limited to maybe 20-25 rudimentary words, mainly food related). In fact, he’s been “playing” us for years now(which we chuckle about now). Once in a while he’ll spit out a word or two, maybe a phrase. It’s not quite clear, but enough to understand because we’ve come to know his Language over the years. And we talk to him like anyone else, he does understand more than I gave him credit for, nipped that bud a few of years ago! I quit babying him so much and he has flourished more! Bless you

    Liked by 1 person

  14. Please please please see a homeopathy dr, someone who is versed with autism.
    Your son will talk, he needs some help.
    Gluten free caisin free diet.
    Supplement with cod oil and vitamins minerals.
    Look up baryta carb for your son
    God bless you!

    Like

  15. I loved your article! I recently started working at a school that has approximately 50%ESE. In my class alone, there are 7 students, 4 of which are non verbal. I have learned a lot about them and find what you wrote to be very true and touching. I really enjoyed the part (because it made so much sense) that your son didn’t lose his voice and it’s quite “normal” for him to not be verbal per se. Like you said, he communicates alright! I also agree with you that I wouldn’t tell most people outright about him being non verbal. I don’t think most people that are only around neurotypical people really understand. 2 of my students have a speech device. Anyway, again, thanks for your information and for sharing about your beautiful son ❤️!

    Liked by 1 person

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