Friday, March 30, 2012

The right to be heard

Article 12 (Respect for the views of the child): When adults are making decisions that affect children, children have the right to say what they think should happen and have their opinions taken into account. (UN Convention on the Rights of the Child)



Daisy is constantly telling us about what is going on in her life, asking us to read books, singing, asking questions...she never stops.  Her mind is on the go all the time with all the things she experiences during the day at school, at home and out and about.  Yet Daisy doesn't speak - over the past few months she has been vocalising more and more and she clearly uses more and more words but for Daisy her main form of communication is through signing.  Her hands never stop, even in her sleep.  And when she is tired or unwell and cannot find the strength to vocalise her hands tell us what she needs.

This was a very early lesson we learned with Daisy - communication is not about speaking,  just because she cannot speak, does not mean she cannot communicate with us.  And it also does not mean that she should be denied the opportunity to voice her own opinion.


We began to use the Makaton system of signing with Daisy when she was a baby.  At this time she was receiving  home support from the local Portage  (early years special needs education) programme.  A Portage teacher would come to the house and she  began using basic signs such as "please" and "thank you" with Daisy as well as signing along to songs like "Twinkle Twinkle little Star".  Initially I felt very self concious signing to this little baby but soon I lost those inhibitions, especially when, as Daisy developed she started to copy signs.  This was such a breakthrough, she was communicating to us and understanding what we were telling her!

We bought lots of books on signing and contemplated going on a course but time and constant hospital stays always prevented this.  The best resource we had to learn to sign were Sing and Sign DVDs, we tried a few different ones and picked up some signs until we found the wonderful Singing Hands !  Anyone who knows Daisy well knows what the amazing Suzanne & Tracy at Singing Hands mean to her.  One of the benefits (if there is one) of our long long stays at Great Ormond Street has been getting to know Singing Hands well as they visit the hospital every Tuesday.  As Daisy is normally confined to her cubicle when she is an inpatient, the Tuesday visit from Singing Hands is the highlight of her week.  Through singing and signing we have learned so many signs and Daisy's world of communication has opened up.  I find myself signing all the time, even when I am not with Daisy and it has become second nature in our family to use sign language,  we have a few favourites including the sign for "naughty" and "sorry" although the older children have also researched a few choice phrases which only those in the know would be able to understand...



Daisy attends a specialist school for children with visual impairments.  One of the reasons we wanted her to go to Linden Lodge was its strong ethos of encouraging signing and enabling all the children under their care to communicate in the way that works for them.  All staff are given instructions on how the children communicate, some use braille, some use British Sign Language (BLS), some use pictures, there are many systems.  Daisy is now using a system called Sign Supported English - SSE, this is a precursor to full British Sign Language but it is used with children who can also vocalise some words.  Staff are encouraged to sign words as they speak them with Daisy and we have found that instead of limiting her speech it has allowed it to develop.  Her signing is becoming more and more fluent and we are confident knowing that she can articulate what she wants, needs and feels.




Daisy is a bright little girl, she is able to understand her world and what is happening to her, there are a million thoughts, opinions, feelings, words in her head that she needs to get out to us and the normal method of speech is just not the most effective way for her to do this.  Can you imagine having all of this going on in your head and not being able to get it out or tell people how you feel - it's like being stranded in a foreign country with a smattering of O level French, desparate to be understood and included.   At the moment we have been doing a lot of work with her about feelings and emotions so that she can express opinions about what is happening to her.  Through signing she can tell us if she is sad, scared, angry, in pain.  Signing is allowing Daisy to have her voice in what matters to her.

She may have a learning disability, she may not be able to speak but that does not mean she does not have an opinion and a right to express how she feels, she is seven years old, when our my other children were seven they were included in conversations and decisions about their lives.  Our constant mission is to remind all the professionals we deal with of the importance of this.  Time and time again I have to ask doctors to remember that Daisy understands every word they are saying so to be aware of exactly what they are saying in her presence.  I get so frustrated by people who say "I must learn to sign" that is such an excuse, why not just ask Daisy questions she can respond yes or know to.  Everyone who takes the time to get to know Daisy, knows that she will make you understand what she wants, regardless of whether or not you can sign, in fact she has far more patience than the adults she has to deal with, it's been essential to ensure that her views are heard and understood.

We don't know if my daughter will ever be able to speak fluently but, in the same way as she receives nutrition in a way that is different to the norm, we have come up with a way that works for her.  She is comfortable using sign language to communicate , it has given her a voice and empowers her.  This is my wish for all children like Daisy , they have a right to have their voices heard and the carers and professionals who support them have the responsibility to make sure this happens, after all......

10 comments:

Renata said...

Well said. Dominic communicated exclusively by Makaton until he was three, now his speech is more or less understood by people he uses it less and less. People (medical professionals usually) still talk over the top of him though unless they know him. I find it remarkable that the default is to not ask his opinion about any of the things that they are proposing to do to him and his body. I end up referring each and every question to him, and even if he's too shy to speak to the dr directly, he will tell me what he thinks of the plan and I'll translate for the dr. I think you've highlighted an important learning point for all professionals involved with children, the children have a right to be heard and be involved in their own care (even if it's as simple as saying no I don't want you to examine me) and to not take this approach is, in effect, taking away their right to have an opinion about their own treatment.

Roger and I use Makaton to communicate across crowded rooms, it's very versatile!

Caroline Sutton said...

Excellent post, we love Singing Hands but have never had chance to meet them! I love the way school helped Daisy to communicate her feelings about you for Mother's day, really moving.
There needs to be a much greater awareness of alternative means of communication particularly in educational settings! When Max was younger we used a lot of Makaton, it always amused me that people assumed he was deaf! I found it shocking and frustrating that so many professionals working in disability lacked a basic understanding/ awareness of Makaton. Thank you for raising this important issue.

Lynda@orchardtoys said...

What a lovely post, thank you. When I retire, not long now, it's my ambition to learn to sign. Hopefully when I have, I will be able to put it to good use helping others.
Daisy is fortunate that she has been given the opportunity, and has been able, to sign. Many children do not have the ability to learn to sign and will be locked in their own world forever. So sad.

Anonymous said...

I found this post especially moving - especially the quote at the end.

I'm in my twenties and have stammered since I was a small child. For years (from the age of about fourteen until twenty one) I was almost silent, never speaking a word. I wouldn't use a telephone, wouldn't talk in class or even to friends and was only really able to speak openly when at home with my family.

I know the frustration of having so much to say and yet not being able to get out a word, I know what it's like to have someone finish your sentences and assume that they know what you want to say, what it's like to have people talk over you because you can't even say your own name.

I think that ensuring that Daisy has a way to communicate is the greatest gift you could ever have given her. She's a beautiful little girl and deserves to be heard.

Anonymous said...

Fantastic Post. I am so glad Daisy is doing so well.

Nicky is 2 with Bilateral Vocalcord Palsy and tracheostomy and only communicates with Makaton. She is so clever and has such a great attitude. Thankfully most people that come round here do talk to nicky and then ask me to translate what she is saying, for their visit they might remember a few basic signs.
Also a bonus is that her little brother is picking signs up just as quick as she is, both can sign "little peter rabbit" and "3 little monkeys". It makes me so proud I am bursting :) To imagine Nicky wouldn't be able to tell us whats up is very frustrating.

Lucy xx

Steph said...

My son has Down Syndrome, a tracheostomy and until recently was 24hr ventilated. Makaton has been life changing for him as its given him a voice. He now tells us things and its lovely. What we love most is when he sits and signs songs to himself whilst he's playing. We never thought we'd say it but our boy is a real chatterbox and its fantastic.

Em said...

What an amazing little girl! I cried when i seen that she had signed 'I love mummy' when talking about mothers day.  My little boys needs are too severe to manage or understand makaton just yet but I do hope some day he too will be able to communicate his thoughts with us.  I agree whole heartedly -  communication is not just about speech!  

Matthew Smith said...

A little bit late, I know, but I saw this post on your "popular posts" list on the right and thought I'd respond. i've noticed that there is quite a bit of sign language on children's TV now, and that schools have started to teach basic sign language. A couple of years ago you may have read or heard in the news about Lynn Gilderdale, the young woman with severe ME who lost the ability to speak at age 14 (among many other things; she remained totally bedridden from that point on) and because her memory was so bad that she could not learn proper sign language, she relied on a system of impromptu hand-signs and using the few letters she had retained to spell out words. It caused her a lot of frustration. As time went on and her memory got better, though, she was able to talk about anything with her family, but she only ever used her own signs and not BSL or, as far as I've heard, Makaton. Learning this sort of thing is important as we never know when we might need it, even if only across a crowded room.

Stephanie Nimmo said...

Never to late to comment on a post! And as you say you never know when you may need sign language - husband and I frequently use makaton across a crowded room!!!

lisamareedom said...

Every year I have to remind the team in my kid's school not to speak about them, in front of them. (unless it is positive) This is why God invented email and text. If they have an issue to discuss they can message me easily and discreetly.