;) We at the Scope Early Years Team have just finished an exhausting and exhilarating run of three information exchanges with interested people all over the country. We have told them what we are doing about getting early communication on the map and they have pushed us to do all this and more. One of the major topics that have come up is that communication for children who will have physical difficulties in this area often comes way too late and no one appears to take responsibility for pushing it to the forefront.

The good news is that there are a huge number of interested committed people out there with this on their mind but the bad news is that communication seems to have no status.

One parent said that if her child had poor sight she gets glasses automatically and if she has poor hearing she gets a hearing aid but when she can't speak that doesn't seem to be anyone's responsibility to sort it out and the family gets passed from pillar to post.

If you have thoughts on this jump in and let me know. I am writing a report on the conferences we have just run but other views are welcome and will be passed onto the people who ought to be legislating to ensure that this area of need is no longer neglected.

I have been trying to learn Makaton sign language so I can communicate with my son. But as he is not yet two and has athetoid CP he can bearly hold a rattle let alone sign back. I am hoping this will at least help with our communicating in the future.

I would love it hear of other ways we could 'talk' to each other.

Claire

Makaton is really useful for helping children with a hearing impairment or limited understanding of language. you sign the important words int he sentence to draw attention to them and help clarify meaning. there are videos avaiable foromMakaton to help you practise.

Makaton is only useful as a communication tool to children who have adequate hand use to bring hands together to sign. but don't worry there are lots of other ways to communicate. the child can point to objects, pictures or symbols and if hands are not up to pointing yet he can look towards the item to indicate choice or mwants. we can build this into a useful supporting activity that will help any spoken language as it emerges.

i have some information on this is you would like to contact me - lindsaybrewis@aol.com.

there is also the Play Talks conference 8th June Northampton where the wholeday will be focussed on communicationg through play. reduced rates for parents and a fre creche.

hope this helps

I think I got the words in the correct order, AAC. In short, using devices to communicate. Our daughter Brigit has been using a 'Dynavox' for 2 and a half years, and it is invaluable. It requires a degree of motor ability, she can use it with a keyguard, but there are oter such as the 'liberator' which can be accessed via other input devices such as hed pointers for those with less motor control in their arms/hands. Brigit is using the dynavox to do her schoolwork, without it, she couldn't really hope to access the national curriculum.

However, it's not hers, technically it belongs to the LEA, as they provided funding. Brigit's best friend at school has had difficulties getting funding from her LEA, and consequently relies on an AAC device provided by the school, at their expense.

Funding for these devices can be applied for via the CAP project, further info can be obtained via 'One Voice', a parent led organisation of AAC users (most of the users are children), they also have a number of adult AAC using role models.

Claire,

We have a son Thomas who is now 4 years old, he has CP and also carries a moderate/severe hearing impairment, the nursery that he has been attending has been using Makaton signs. As a consequence, Thomas is now starting to apply some basic signs to indicate what he wants/needs. He is also using a Talk4Talk with some limited success, he started off well but he is starting to lose patience with it now. Thomas is improving as he gets older and we are now going to start learning Makaton as we feel that this is more likely to assist his communication, his verbal is very limited.

Danny

it is true that CAP can help provide aids for children and it is well worth visiting their website www.becta.org.uk/cap to look at the criteria for aplication but they are not the first port of call. it is really importat to build up a local team of support for the combination of paper based and battery operated devices a child will need. when this support team needs more help CAP can come along and top it up.

there is a downloadable Communication Passport Template on the early years site and the report Fighting Hard that tells the families' stories about getting help for children with communication needs

lindsay

i've found (lack of) communication to be by far the most frustrating part of my daughters disability.. and it's true - it's the area that's least covered for help. She has quite severe cp (quad), doesn't use her hands well (doesn't point), no speech at all (just 'ahhhhs') severe learning disabilities (doesn't as yet show any understanding of speech).. she' 3 and a half by the way. I was told last July that she wasn't able to be helped by our speech therapist (as she wasn't speaking ?!!), but then in September we were assigned to a new lady who'd just qualified, and she's been wonderful. We've done a bit of work on basic switches (press the button to get a biscuit or juice..), choices (press the button for which toy you want..) and now we're looking at pictures. Very early days yet, but she's starting to show signs of picture matching, and at long last has started to take notice of tv, look at peoples faces, pictures of babies in books.. it's wonderful, like a light has been switched on in her life. What's so sad is that i've found such a huge discression in how helpful (and knowledgeable) the speech therapists are.. and we rely on them so much. They can make such a huge difference if you get a good one..

the Scope CAP team are holding a number of days for training in the area of switch access and general developmental delay. find out more about these by phoning Lana at Scope CAP on 0207 619 7100.

lindsay

My son has spastic cerebral palsy and is 3 years old. he had terrible problems with sensitivity in and around his mouth and we were told that speech would not be his first method of communication.
We presevered with pushing biscuit between his cheek and gum and tomato sauce around his lips, blowing feathers and seqins first with his nose and then with his mouth. We used a electric tooth brush on the inside of his cheeks and to push up his bottom lip for 20 secs twice daily as he had slack muscles from not speaking or chewing.
Eventually he could blow a whistle very softly if we put a foam curler around the mouth piece to help his mouth closure.
All of these motor exercises were dismissed by his speech therapist, but recommended by the Scope Rose Walton School for parents.

it took a year to control his toungue from doing a mexican wave in his mouth but speech is progressing all the time and his has about 10 understandable words. of course his favourite word is NO!

really pleased to hear that your son has made so much progress and that you have found School for Parents so helpful. we recently had our eleventh national conference and a lovely man called Michael Akehurst gave us exaclty the same message about vision - keep up the stimlation it can't do any harm and it may well help!. however supporting emerging speech with another methd of communication will not delay or damage speech opportunities and can really ease frustration so i would always urge families to have lots of different way the child can support communication that are appropriate to the situation.

:) I would definately agree with that and Makaton has been invaluable for helping to stop frustration.
Unfortunatly our family have not been very supportive or interested in learning Makaton so it has mean't that if my husband or myself have not been around my son's effort's at communication has been misunderstood. It has also made people wary of looking after my son in case they could not understand what he wanted.

Luckily the motor control exercises have helped to train tongue movement for when he felt ready to try speech. so I think that you can do both in tandem with great effect.

the use of Makaton is fantastic and great for children who can use their hands and, as you point out, where families are willing to learn the signs. there are other ways to help such as a little book with pictures in that a child can point to just to clarify speech when the adult doesn't understand. this can give a child so much confidence to try talking to lots of different people. have you seen the comunication passport template that you can download from this site? its a bit of help to the others in a child's life that don't know him as well as his parents. linds

We too have been frustrated by the lack of input from speech therapy, they see my daughter every 4 weeks in nursery (I go in too if work commitments permit) but SaLT don't really do anything or give us exercises to practice, which is what I had expected. In the end we persuaded Portage to teach us Makaton and the progress has been tremendous. Our daughter now has a couple of new spoken words coming every week or two and is starting to string them together e.g. "mum, up" (or simply "mup"), and to combine them with Makaton to express more complex ideas. I think if I have more kids I will use Makaton from the start with them as I think it will help any child to develop language. Our nursery are using Makaton with all the kids, mainly so they can understand and communicate with my daughter, but it is also helping other kids who aren't speaking yet. It's certainly been a real help to us.
What's really good to see is that now, at just over 3, she can already "read" the alphabet using a variety of sounds, words or makaton signs for each letter e.g for m she says mum, for a she signs apple. I don't know why she's so keen to learn the alphabet, I don't think I've pushed her into this, it was just something we were looking at together one day and now she won't let me put it down - funny things, kids! The thing is though, without a form of communication, how could she have demonstrated this ability and interest to us? I think more should be done to help develop early language by whatever means are available and I don't buy this "There's nothing we can do until she's talking", surely their job is to get her talking. Until they are communicating there are so many other developmental tasks that cannot be achieved. . .Grrr Grrr Rant Rant
That's probably enough for now ;)

i think all of us have a job to do, parents talk to their childern and find any way from making signs to looking at pictures to get the children communicating - it really can't hurt! speech and language therapists can really help if there are excercises we can do or if there is a specific language difficulty or if the child needs to access a communication aid but teachers teach communication skills to all children and they need not be frightened if the communication isn't all through speech.

I have an 18 month old daughter called Eleanor she has four limb cp but has no learing difficulties. We have always had alot of problems with feeding and finally we have to accept that she will now have to be tube fed. We have also recently been told Eleanor will have severe speech problems and will rely on communication boards,computers etc. Because Eleanor has no learning difficulties already her frustration levels are becoming very apparent she finds it hard to communicate as she has limited movement physically. We have been told her tongue has limited movement so her speech and feeding will be affected. However Eleanor does make a variety of sounds we have been told there is little point with exercise for her speech as they haven't had many positive results in the past, But I feel this is writing her off before giving her a chance. Does anyone know of any exercises or tips to help with tongue movement and speech any advice would be gratefully recieved, while I do not expect miracles and need to be realistic to my childs needs I refuse to give up on her.

feeding and speech are very closely tied together as they use many of the same muscles. you need to do two things. firstly you need to give your daughter an augmented means of communication -this will not stop her speaking and will cut her frustration. secondly you can continue to support the range of sounds she can make and help her to continue to differentiate them as she will use voice for a lot of intimate conversations. if there is a school for parents near you they have programmes to support mouth movements, speech and speech-like voice. otherwise continue to encourage all sounds. go for lip closue "MMMM" and open mouth "OOOOH" and, if possible tongue out wide mouth "AAAAH" i have a song bok and tape that sings a little song to support this.

not every child speaks clearly enough to say all the things they have to say but a communication aid such as a board with pictures can cut frustration and support communication. research shows that children who have aids speak, and use voice, more than similar children wjihouti aids. i have a command game to start you off where the child gives the adults in her life silly things to do! contact me lindsay.brewis@scope.org.uk if you would like me to send you either or both of these.

indsay

We just got ourselves a go talk 9 for our son who is 2, but don't know which symbols would be good to use. It looks like Boardmaker is a good software, but it's so expensive. Does anyone know where to get financial help for something like this?. He is starting nursery and has a statement. Would we be able to get the education authority to pay for it, if it was requested by the nursery?.

I would suggest talking to your SLT as she will know which symbol systems are in use locally and which one is most suitable for your child.She should also be able to provide you with the symbol overlays for the Go talk.For school you will need her to recommendit and then get it put in the statement.
Good Luck

http://www.liberator.co.uk

Tabby is learning cause and effect and loves to be able to copy me say hello etc!!!!

Claire :)