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MumsnetGuestPosts (MNHQ) Wed 27-May-15 15:45:03

Guest post: "How I communicate with my non-verbal child - and how you should, too"

Abstract Lucas describes how far her son's communication skills have come, and urges everyone to make the effort to speak to children like him

Abstract Lucas

Blogger

Posted on: Wed 27-May-15 15:45:03

(27 comments )

Lead photo

"Any level of communication lets us share a little bit of his world."

Smiler was ten days old when his dad and I were told his brain was too malformed to create or retain memories. "He won't walk, he won't talk, he won't smile, he won't remember you from one day to the next", they said. Our baby boy was a genetic fluke, a statistical aberration.

In the days that followed we had many appointments and tests, and met many sombre consultants who cleared their throats before meeting our gaze. One of them said something different though, following a particularly difficult hospital appointment: "they don't know what he might do. They're only guessing. Let him see your face and hear your voice - talk to him all day long."

So we took him home and we talked to him. Before, during and after physio routines and hydrotherapy, during long bus journeys to visit consultants, we talked to him. We read aloud from whatever books we were reading, we sung along to the radio and we narrated our most mundane activities. We surrounded him with words.

Over the next two years Smiler gained a brother and a sister, and though his development was certainly slow, it was also undeniably progressing. He watched our faces, and as he gained control of his body he began to make noises back to us - nothing approximating words, but still purposeful sounds.

Our focus was always communication, rather than speech. We couldn't bear the idea of him feeling alone. Smiler is a wheelchair user, he takes different medicines several times a day and he has regular planned and emergency stays in hospital – any level of communication would let us share a little bit of his world.

Sometimes people worry about what to say back, but even if he doesn't understand their words, the fact that they reply to him means a lot.


The speech and language therapy provision was pitifully inadequate. Smiler had a statement and attended specialist education provision, and yet his class of 21 children - all with severe or profound learning difficulties - were allocated just four hours of therapy a fortnight. Understandably, priority was given to children with eating and drinking issues rather than communication issues. We were left to get on with it, seeking ideas, inspiration and support on internet forums and through chance advice from other parents.

I'll never forget the first time Smiler spoke - when he used his voice to say a word instead of make a sound. He and I were in Mothercare, and as we drew close to a stand of toys from a CBeebies programme he looked at it and said "Boo". I bought the toy, tears in my eyes as I handed the money over. The massive reaction he got for repeating his word over and over was clearly an incentive and within a year he had another thirty words or fragments of words, or Makaton signs, that we understood. As he has learnt more words we've realised that he understands a great deal of what is said to him and around him, and he's very sensitive to non-verbal cues like body language and facial expressions.

Despite all this progress, Smiler was officially classed as non-verbal last year. I was shocked. It felt like a kick in the teeth, undermining all the effort we'd put and denying his achievements. I thought perhaps the label might up his priority for speech therapy, but in fact, it has continued to be something of a mythical holy grail.

The lack of professional help makes it all the more important that we, and everyone else around him, keeps chatting. We encourage him to communicate with everybody, saying "thank you" to the driver as we get off the bus for example, or when a waitress brings his food.

Sometimes people worry about what to say back, but even if he doesn't understand their words, the fact that they reply to him means a lot. I love it when doctors come into the room and introduce themselves to Smiler before turning to me. It helps him recognise that he matters, which is something each and every one of us needs to feel about ourselves. In my experience, making eye contact is a great place to start - that simple acknowledgement of existence, accompanied by a genuine smile, is the first step in many of the ordinary conversations we share every day.

I've forced myself to ignore the labels, in the day-to-day life of my son they are irrelevant. He may be 'non-verbal', but he does communicate, which is all that matters to us. With determination and perseverance we've shared hundreds of conversations, and because he knows he can communicate with us - and that we will try our hardest to understand - he remains motivated, and keeps on talking.

By Abstract Lucas

Twitter: @abstractLucas

madwomanbackintheattic Wed 27-May-15 16:53:36

We used OWL with dd2. So talk normally, ask questions etc, but then follow OWL to check for a response to what you had said. Observe, wait, listen (or look)
We used to tell people (key workers, therapists, friends) to wait an additional 5 seconds once you really thought you had waited long enough for a response. grin and the response could be a noise, a smile, just a look, an arm or hand movement - all sorts of things to indicate acknowledgement or understanding, and that would facilitate the next communication.

We were told she would be non-verbal from very soon after birth, (she was one of the kids who required a lot of feeding support too, so we had brilliant SLT right from birth - sorry OP!) but in fact she isn't, although she was statemented for communication into school (key workers used makaton, although as she also has physical disabilities it was a bit like trying to read scribble grin.

Communication is far wider than words. grin

2boysnamedR Wed 27-May-15 18:29:41

I still think I'm stuck in that "just wait another xyz months and some help will start".

Help isn't coming and it's good reading the above.

Be the change you want to see in the world.

PausingFlatly Wed 27-May-15 18:48:45

Thank you. This is something I know very little about, so it's brilliant to have a bit of guidance. I'll remember OWL now.

madwomanbackintheattic Wed 27-May-15 19:04:51

Sometimes the response is really subtle - even an eye flicker, and you can build on it as you get to know the child. Communication is an amazing thing, and I am in awe of the SLTs who work to enable even the most complex children to be able to interact with the world. The technology available now is amazing, but it all starts from the same place - people investing their time and effort into recognising even the smallest of details.

icklekid Wed 27-May-15 19:08:48

Your post, especially the scene in mothercare, has moved me to tears. Thank you for sharing your story. I work with children in mainstream with a variety of needs but you have really made me stop today so thank you and good luck with smiler x

abstractLucas Wed 27-May-15 19:09:07

Hi madwoman, Smiler is a bit like that - it's about recognising that response, whatever it is, and rewarding that. I don't resent anyone else getting SLT at all - I'm sorry if it came over like that - I just think there needs to be a lot more available! We had Portage early on - that was fab for Smiler, and taught us a lot.
2boys - how frustrating - I think Smiler's very early diagnosis (of a unique genetic condition - only one on the planet with it!) and very pessimistic prognosis actually worked in our favour in terms of help, although not SALT. So many parents have to really fight for help at school etc but the professionals involved with Smiler fast tracked him as it was clear he was going to need extensive support. He's thirteen now, uses a wheelchair, has maybe 200 words/bits of words/signs, and recognises his name written down, which is (yet another!) personal milestone for him that we didn't know when/if he would he would reach.
I love OWL - it's simple but a great reminder!

abstractLucas Wed 27-May-15 19:12:51

Thank you Icklekid - what a lovely compliment! You can keep up with Smiler (and the rest of us) at www.abstractlucas.co.uk
And he still loves Boo. Problem is it was on cbeebies so long ago that you rarely see the toys or books or anything around anymore - but boot sales and ebay have so far come up trumps!

madwomanbackintheattic Wed 27-May-15 19:24:12

No need to apologise - I was being a little tongue in cheek wink

Dd2 is almost 12 and unrecogniseable from the first four or five years of her life, so your post was a bit of a walk down memory lane for me smile.

Portage are altogether another set of angels in their own right. Dd2 loved her portage workers, and they were another group who helped us to make those very early communication links and build on them.
We have moved so often and been through so many therapists of so many different types, and the debt of gratitude we owe to so many people is overwhelming. At some point I will try and track some of them down and pen them a note to say they aren't forgotten.

Thanks for the reminder of both the miracle of communication and the memories I hold x

StaceyAndTracey Wed 27-May-15 19:26:50

You could start a thread looking for Boo stuff , there's bound to be some Mumsnetters with things at the bottom of the toy box looking for a good home

I'm sorry your son was considered to be non verbal . As a parent of a child who never spoke a word in his life , he sounds like a chatterbox to me smile

2boysnamedR Wed 27-May-15 19:36:26

My son has a unique chromosome issue. Well, not totally unique as it's not de novo ;0) so at least three people in our family have it. Weirdly it's not presented problems in their dad who it came from

ThumbWitchesAbroad Wed 27-May-15 19:49:35

What a lovely heartfelt post. So sorry you're not getting as much help for Smiler as you probably should, but it sounds like you're doing the very best for him, and thank God for that one doctor who was different from all the others in the beginning!

Smiler sounds wonderful. smile star

hazeyjane Wed 27-May-15 20:21:06

Thankyou for the wonderful post and link to your blog, which I will look at in more detail.

My ds is nearly 5 and as yet has no confirmed diagnosis, although it is thought that he has Kleefstra Syndrome.

He said his first word last September, 'yup' and now 'nope' (dh made him a tshirt with these on). He makes a lot of attempts at words, but it is mostly 'unh' that comes out. He is very keen to communicate, but has no words to say what he wants to say. He signs, and uses a lot of pantomime. He has just been awarded a communication device, which has an AAC app downloaded, and I really hope that he will be able to use this for some of the things that he so wants to say, but no-one understands.

As soon as someone knows that he has limited speech (he is still classed as non verbal) most people seem to stop talking to him, and direct everything to me - the people that do talk to him, and make the effort to joke with him, are rewarded with the best smiles and laughs ever.

ouryve Wed 27-May-15 22:39:32

The experience that we've had with DS1 is that SALT only want to know when there's a protocol to follow and they're certain of a positive result. DS2 got nothing consistent until he was 7, when the skills required to use PECS emerged. Until then, all he cared about was the velcro on the back of the cards, which all had to be in the same place all the time (no rare chromosomal stuff going on - ASD in his case), which meant that he got no SALT intervention, despite obvious oro-motor difficulties.

People would ask how I knew what he wanted or needed. Well he showed me, either directly, or indirectly, just as most babies can when they're pre-verbal. A particular pattern of behaviour when he was hungry or about to fill his nappy. If he wanted something, he'd drag me over, by something painful, usually, and stare at it, wistfully, or cry. If I was at my laptop, he'd slam it shut on my fingers to get my attention.

As is typical of oral dyspraxia, never officially acknowledged because of his ASD diagnosis, he'd occasionally blurt out a word in a highly emotive situation, only to never be able to reproduce it again.

He's just turned 9. Last year, he learned to spell, thanks to Alphablocks. This year, he's moved on from wooden letters and has learned to say the words he reads. He's still very indistinct, but often spells out a word I can't understand. He's been practising hard and says his alphabet perfectly clearly, repeating himself until he gets it right. A year ago, I wouldn't ever have dreamt that I'd reach a stage where I'd be saying, "please, no more songs for tonight, I'm exhausted!" Songs such as"fise eh-eh moh-kies juppy eh eh bed" all the way down to no monkeys, several times through.

He argues with me, which is wonderful - more parents should appreciate this skill! DH was away for work, today, whisked away by taxi in the early hours. DS2 noticed he wasn't around about half an hour after he got up.

"Dad!"
"Dad's gone to work, already."
"CAR!!!!!"
"Dad went to work in a different car today."
"Car! Car!"

SALT can take no credit either for the huge increase in vocabulary or the increase in clarity. He's seen none since last summer, before they changed providers in our area. The new ones keep phoning school for updates, until his 1:1 got fed up of it and told them they needed to visit him themselves.

ouryve Wed 27-May-15 22:43:31

the people that do talk to him, and make the effort to joke with him, are rewarded with the best smiles and laughs ever.

DS2 looks at most people like they came from another planet, when they talk to him (that's the ASD - he tried to push some poor unsuspecting guy off the seat on the Metro, today!), but will shake his head or whack someone if he thinks they're talking rot!

5madthings Wed 27-May-15 23:33:26

Smiler sounds fab, I shall remember owl.

I have a 12 yr old with asc who has a fab vocabulary but when he is upset or stressed or anxious he shuts down, we are still learning strategies and ways to communicate with him.

Btw I have a boo, if you want it I can send him on. None of the madthings play with it. It's like the one in the pic.

Heyho111 Thu 28-May-15 06:22:34

Did the salt demonstrate intensive interaction. This is a beautiful way of encouraging communication.
Very basically you copy their movements and vocalisations. Copy the slightest hand movement, noise etc. the child then realised you are copying them and starts to make deliberate noises and actions to watch you copy them. In time you turn it so sometimes they copy your noises and actions.
It's about you entering their world not asking them to be in ours. They feel you really get them when you do this. It also encourages communication. Even if they are at a slightly higher level than needing intensive interaction they still love and benefit from it.
This was a very basic description of it. If you've not done it please google it and give it a go. It is by far my favourite way to work with children. The responses are just beautiful.

kikidee Thu 28-May-15 07:26:41

That is a lovely post - it sounds like you are doing a wonderful job and have a lovely boy. My DD is profoundly deaf so her early years were similar in that we had to keep talking and talking even when we weren't sure if she could hear us. The joy when they respond is overwhelming and its hugely rewarding to see their development and to know that your input has got them some of the way there. The professionals may class your son as non-verbal but it sounds to me like he's very much a part of your family life and communicates beautifully.

wheresmyAga Thu 28-May-15 07:44:39

Thank you for a very helpful post Abstract Lucas. and also Heyho111.

I've just started volunteering with riding for the disabled and your tips about OWL and the importance of trying to enter their world are very timely. smile

Lottapianos Thu 28-May-15 12:38:06

Hi all, I'm a SLT and I'm afraid I can only agree with the description about the levels of provision as 'pitifully inadequate'. It's enormously frustrating from a professional's point of view, knowing that the service we are resourced to provide can barely scratch the surface of what is really needed. There are ever increasing numbers of children who need SLT support and we feel totally hamstrung by lack of funding.

Good luck to you and Smiler, and I'm glad you've seen him make so much progress smile

NoIsNotACompleteSentence Thu 28-May-15 12:59:12

What a lovely post. I have DC with SN who use a Variety of ways to communicate.

I said on a thread recently, about my DS, that I was speaking to my mum about his difficulties with communication when he wanted to sleep at their house, and she said "he always let us know what he wants even if he doesn't speak, we always know" which I thought was lovely.

I also remember my DD not having "recognisable" words - when she wanted to make a banner for her Grandpa's big birthday, instead of "happy birthday grandpa" we wrote his name as she said it, I think it was "ArPar" - he almost cried when he saw it! Years later, she can say "grandpa" recognisably but we still remember the banner.

I will look at the blog. I predict an influx of Boos for Smiler smile

saintlyjimjams Thu 28-May-15 15:31:58

My son is 16 and non-verbal

His ability to express himself has decreased enormously over adolescence (he was stringing sentences together using a talker) so I've had to go back to recognising subtler signs of communication. He grabbed my arm earlier this week and I thought it was because he was upset, but then I realised he was actually pulling my hand towards a photo of a swimming pool and wanted to go swimming.

x2boys Thu 28-May-15 15:34:09

Ds is five he is classed as pre verbal he babbles a lot understands what we say to him uses pecs etc but doesn't speak he goes to a s\ n school so gets regular speech therapy there I won't give up hope that he will speak I just don't know when.he has a chromosome deletion thought to have caused his ASD and learning disabilities.

wentshopping Thu 28-May-15 16:17:18

Communication is far wider than words.

^^ This.

DD is non-verbal but has many ways to communicate - "Yes" used to be a smile and a jump, which had to be modified as she broke the headrest off her wheelchair twice with her enthusiastic agreements to things.
An eye roll upwards sometimes means "upstairs" or "big"and sometimes means "remember that time when we were on a plane on our way to...."
Apart from body language and nodding, she also uses an eye-gaze communication device, which is also her way to fully access a computer, mouse etc. If people don't know her, though, they don't realise the time delay it takes for her to compose her sentence, and she frequently gets left behind as the conversation has moved on.
When she was in elementary school (=primary, we live in USA) her friends always wanted to "talk" to her by asking yes/no questions, holding up one hand for yes and one for no, and she would look at the appropriate hand... the big challenge has been to find a way for her to initiate a conversation herself.
Just the other day a teacher at another school was asking me about how cerebral palsy affected dd, and I completely forgot to mention that she cannot talk; How's her language, the teacher asked, and I was puzzled for a moment, until I caught myself and explained that she didn't have that sort of language but could communicate in many other ways. (Not always understood by those around her!)

ouryve Thu 28-May-15 17:32:10

DS2 loves II, heyho. It's pretty much how we "chat" together a lot of the time - he'll say or sing something and wait for me to repeat it. When he did have SALT input, a new therapy assistant would do it with him to break the ice and get to know him.

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