Three Things I Have Learnt About Children’s Speech From My Non Verbal Son

I thought I knew a fair amount about how children learnt to talk. I knew they watched their caregivers, mimicked sounds and eventually words, and over time those build up to two word sentences, then perhaps phrases, and finally fluent speech. I knew some children spoke a little later than others and some were a little harder to understand but until I had children of my own it never really occurred to me that some children never learn to speak at all.

My son is almost 11 and he still can’t speak. I never knew that was even possible but in the long journey I have been on since he came into my life his lack of speech has actually taught me so much about children’s speech in general. All my assumptions and generalisations were in fact ignorance based on nothing more than limited experience and lack of knowledge.

It’s amazing how having a child who struggles with something others manage seamlessly can make you learn!

So what has my non verbal child taught me about children’s speech?

Through him I have learnt that:

1. Speech is actually not the most important thing after all: communication is!

I was so caught up with panic at the fact my toddler didn’t say any words that I hadn’t noticed how he was communicating! His eyes, his body language, his facial expressions, his noises all communicated in ways that words couldn’t. He had, and still has, ‘happy noises’, ‘agitated noises’, ‘tired noises’ and ‘excited noises’ and by understanding and responding to them we can communicate really well despite a complete lack of spoken language on his part.

We (notice I had to do it too to teach him not just him) have experimented with using objects to communicate, photographs, picture cards, drawings, pointing, and sign language. He didn’t immediately latch on to any particular one but he can sign ‘yes’ and ‘thank you’, he does point now and again and in the end he developed his own very unique means of communication using google street map. What he lacks in spoken language he more than makes up for in ingenious ways of getting his point across in other ways.

2. Lack of speech doesn’t mean lack of understanding.

Receptive language and expressive language are two very different things but until I had a child who can choose his own dinner, follow a simple instruction and get his shoes when I mention I am going to the shops, but who couldn’t actually speak to me I had no idea this was normal. My son isn’t deaf. He hears everything said which unfortunately isn’t always a good thing because when I say to anyone he can’t speak most people then seem to talk to me and completely ignore my son. Even worse are comments like ‘that’s a shame’, and ‘I’m so sorry’ like my son has some awful infliction when he just happens to be non verbal.

My son does have learning difficulties but even taking that into consideration his ability to understand is years above his ability to talk back. The lack of spoken language doesn’t always mean learning difficulties though and given other ways to communicate many non talkers have shown they can gain degrees and pass their driving test and achieve in ways many thought impossible.

3. Having a child who struggles with any aspect of speech is not the fault of the parent.

Did you know that the first thing that happens when you finally get a referral accepted by speech and language therapists is that they send you on a parenting course? The message very much seems to be (wether intentional or not) is that the parent is somehow at fault. My child isn’t non verbal because I am an awful parent. Contrary to what many think my son has books read to him daily, I talk to him all time, I sing nursery rhymes,, he has experienced language enriched environments from birth and he couldn’t be loved more. He just doesn’t talk.

I’ve been through the guilt questioning what I did wrong. I’ve felt the judgement of others and often still do. I know that pitied look when a stranger talks to my child and I explain he can’t speak.

When your child doesn’t master skills other children do there is a feeing of isolation, failure and despair that you are in fact the world’s worst parent. That is, in fact, so untrue. If anything the opposite can often be more accurate as parents over compensate for their child’s struggle by taking time to attend courses, do research, and buy all sorts of resources to give their child the best chance to succeed. My experience of families with a child who struggles in any way with speech is that they move heaven and earth to support their child and go above and beyond. Having a non verbal child is very very rarely due to neglect.

My son is amazing. He is funny, clever, excitable, affectionate and fun. He just happens to be unable to speak.

His inability to form spoken words has actually taught me more about speech than I ever thought possible.

You don’t always need words to communicate anyway.

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)