Speech Therapy (part1)

Speech and Language Therapy with Galina

This article explains how Gerda Stevenson, a professional actress from Peeblesshire, in Scotland, gathered ideas from a variety of sources about activities to promote speech and language development. She describes how she was inspired to help her own daughter, Galina, and to work with other parents in lobbying local officials to improve the provision of services for children with communication difficulties, including Down syndrome.

In November 2001, a meeting was held with staff from Borders NHS Trust Speech and Language Therapy department, and a local parent group, of which I am a member. Our (local parent) group had requested the meeting, as we felt that the speech and language therapy services in Scottish Borders were not reaching our children as effectively as desired, and indeed required.

Parents felt that there was a need for more information in relation to Speech and Language Therapy. At this meeting, I was asked to compile a list of the information I’d gathered, and the resources I’ve employed, since such a document could be useful to parents.

Rather than simply compile a list, I decided to describe how I’d used the information and resources. The following pages, written two years ago, chart my approach (from 1999-2001) to speech and language therapy with my daughter Galina. This has been a journey of discovery. Some people, including professionals, have expressed surprise and reservations about the level of input involved. One of them commented memorably, “Oh, it’s such a lot of work, Gerda. I know Galina’s benefiting, but don’t you think she’s maybe more a case of nature rather than nurture?”. “Keep you’re eye on the ball, Gerda!” was my unspoken response.

I am a working mother and can’t devote all my time to teaching my children. But with careful planning in advance (which is essential, since it’s frustrating for Galina if I break the flow of our work by preparing in the middle of it), our structured work usually involves about 45 minutes per day, not necessarily in one block of time, sometimes a good deal less. To work in detail with my child has been the most bonding and rewarding experience. She responds so well to all kinds of therapy - there can be no advantage in not pursuing any worthwhile avenue. Much of what I described here relates to a child who has Down syndrome but, within the different approaches I have laid out, some elements will be applicable across the spectrum of disabilities.

So, here is what Galina and I have done together, with help from some skilled and inspiring people. 

 

Background to my situation: a personal viewpoint

In April 1998, I gave birth to a baby daughter, who happens to have Down syndrome. At this point, I knew very little detail about Trisomy 21, the chromosome disorder that Galina has.

A friend wrote to me at the time of Galina’s birth, saying that early intervention and stimulation are very important. Another friend told me about a little boy she knew, who had Down syndrome. “He’s lovely, so sweet, but he doesn’t speak. He had four words when he was a toddler: ‘Mummy,’ ‘Daddy’ and ‘Postman Pat.’ Then he stopped speaking. He’d said it all!” That story haunted me.

The more I read about the subject, the more I realised that speech is a significant difficulty for children with Down syndrome. I’d read that in terms of cognitive development, babies and children with Down syndrome can be on a par with their typically developing peers. It is obvious that a child who can think but can’t communicate is likely to feel misunderstood and alienated. Such feelings could lead to deep frustration.

I was given a small book, The development of language and reading skills in children with Down syndrome [1] by a local authority professional - this book was crucial for me as Galina’s mother, like the sowing of a seed. This little book made it absolutely clear to me that early intervention in the form of signing and reading would be vital in relation to Galina’s speech and language acquisition.

At this point, there was no support for such an approach from speech and language therapy or educational psychology departments in our area. Galina’s first two speech and language therapists did not use signing. The professional who had loaned the book to me stated that she knew of no parent in our area who used signing; and that if signing was adopted, it was likely that only the mother would use the signs, so the child would be limited to signing with that one person alone. Having read the above-mentioned book, I thought, “Well, if Galina can at least communicate with me, and I’m with her most of the time, then that’s better than her not being able to communicate with anybody.”

Organisations I have contacted and materials I have used to work on Galina’s Speech and language therapy

I was given  Signalong - Phase 1 [2] by the local NHS speech and language therapist, when Galina was about 18 months old. The manual had no index, and was impossibly slow to use, because, by the time I’d ploughed through the book to find the sign for the word, I’d lost the context. I phoned Signalong in frustration, (fortunately their phone number was in the indexless book!), and explained my difficulty. It turned out that the manual I’d been given was ten years out of date, and that every Signalong manual is now published with an index. I immediately ordered my own copies, directly from Signalong, of Phase 1 and Phase 2 and their publication Foundations - Learning Through Exploring And Creating [2]. This was expensive, but invaluable. I mention this because such an experience of struggling with a manual, which is not user-friendly, can be disastrously off-putting.

At this point, I wanted to join a class in Signalong, but no such facility was offered in my area. However, Signalong will provide you with a contact list for courses in, or near your area [2]. We started using the signs at home and I have found this system very user-friendly, provided one has the up-to-date manuals! Galina also occasionally uses unadapted British Sign Language (BSL), e.g. “hedgehog,” which is a beautiful sign in BSL. The mixture of modes arises from a very lucky opportunity that opened up for me in April 2000. I was invited, through a friend, to take part in a course aimed at teaching parents of deaf children to sign story-books for toddlers. The course was organised by my friend who was the administrator of a professional story-telling company for the deaf called Stories in the Air [3]. This course, of 15 weekly classes, was conducted in BSL, and was held at Donaldson’s School for the Deaf, in Edinburgh. BSL syntax is, of course, completely different from Signalong. The latter is sign supported English, whereas BSL is a completely separate language and culture, I discovered! You might imagine that this could be confusing, but, actually, it was not at all. I simply used what I wanted of BSL, and adapted it to Galina’s needs. In fact, BSL, Signalong and Makaton [4] signs are all very similar.

Signing story-books was a wonderful way of learning to sign: children adore repetition, and of course, repetition helped me and Galina to learn the signs. The books were carefully selected by the course facilitators according to the following criteria:

1) great stories
2) brilliant illustrations
3) useful vocabulary which could be employed in everyday situations

Learning with other parents was hugely enjoyable, and therefore very motivating. There was always time for a chat to compare notes at coffee break. We weren’t allowed to speak during the class – it was total immersion, signing in silence. As a professional actress, I found this experience particularly fascinating, since by day I was rehearsing the title role in Phaedra, at Edinburgh’s Royal Lyceum, spouting pages and pages of text, being torrentially verbal. But, on Tuesday evenings, for two hours, I had to communicate in silence.

With Galina, however, I’d always speak and sign simultaneously. It is important to understand that signing with a child who has Down syndrome is not an alternative to spoken language; signing is used as a visual support to the spoken word, acting to show children with Down syndrome what you mean. As a visual form of communication, signing is appropriate for children with Down syndrome, who have strengths as visual learners, but do not learn well from listening alone. Research shows that early signing and early reading significantly enhance speech and language acquisition. Signing is not nearly as daunting as it sounds - the signs tend to be logical and easy to remember. On the whole, you only sign key words, so it’s not a question of becoming a fully-fledged student of British Sign Language! Galina’s signs are not always accurate, but I understand them, just as parents recognise their children’s inaccurate early speech, from its context. Usually a child who has speech delay, but is signing, will start, after a while, to speak as well as sign, just as the parent/carer/teacher is doing. After some time, the child spontaneously drops the sign and speaks the word with confidence. I read about this process with fascination, I have adopted it, and it works.
A couple of weeks after I had started the night class course at Donaldson’s, I placed a photograph of Rob, Galina’s brother, near to her cot as she slept. When Galina awoke the next morning, she looked at the photo, and spontaneously signed her first three-word sentence. “Rob bagpipes door” and indeed, that is exactly what Rob was doing in the picture, playing the bagpipes at the front door. Galina was using her own sign that she had invented some weeks ago, for “Rob” and this was an absolutely thrilling moment for me!

I would urge parents not to wait until their child speaks: start signing as early as you can, when the baby is a matter of a few months old. Then begin a reading programme from age two.

Books are a constant and much-loved activity. Galina will spend ages leafing through her books, and attempts to sign and say the stories herself. I introduced Galina to books when she was three months old - just as I did with her older brother. When she was very small, I always faced Galina, propping the book up in such a way that she could see the pages and watch my hands and mouth speaking and signing. We also cuddled together on the sofa, or she would sit on my knee, and I’d sign, side-ways on, which she seemed to follow perfectly well.

I’m particularly interested in the approach of early reading as a tool in the process of spoken language acquisition. The Down Syndrome Educational Trust (DownsEd) at the Sarah Duffen Centre in Portsmouth has shown the most impressive results with children who have taken part in the early reading programme. I bought a most useful video from Downs Ed, which demonstrates the effectiveness of their early reading programme, and have been circulating this video among parents and professionals. 

I became a member of the Down Syndrome Educational Trust and have bought a lot of the teaching materials that they advertise in their catalogue. Central to their approach is the realisation that society’s ignorance and low expectations of people with Down syndrome can have a negative effect on the lives of people with this extra chromosome.

A conference that opened doors

In September 2000, I travelled to Portsmouth to attend an international conference held by the Down Syndrome Educational Trust. The local Rotary Club paid for my conference attendance fee of £200 and fortunately, an old family friend gave me a bed for the night. The subject of the conference was Speech, Language and Cognitive Development in Down Syndrome. It was completely fascinating, and I was lucky enough to meet a speech and language therapist there, from a specialist speech therapy organisation called Symbol UK [5]. I wondered whether she might assess Galina. We arranged for her to visit us at home in February 2001, when Galina was two years and ten months. Galina’s NHS speech therapist very generously agreed to join the meeting in her own time. Within fifteen minutes, the Symbol UK speech and language therapist demonstrated that Galina was capable of reading at least four words, through ‘single-word matching’ (see [2, p.77] for a description of this technique). The Symbol UK therapist drew up a target plan, giving us a structured programme to work on with Galina. So many possibilities opened up during this assessment, filling me with a new sense of motivation and indeed, inspiration. The following July, I went down to London, to observe the same speech therapist working for a full day with a series of groups of children who have Down syndrome. These group therapy sessions run on a regular weekly basis. I have found the Symbol UK techniques tremendously imaginative and useful. I have been fortunate to have this work supported by Galina’s current NHS speech and language therapist, our third in two years. NHS provision appears to be erratic in our area, and lacking in continuity. There also appears to be a surprisingly varied level of knowledge among speech and language therapists.

Galina’s current speech and language therapist and playgroup leader have taken on board my daughter’s needs with enormous commitment. But many parents and, indeed, professionals, are, understandably, lacking in confidence in this area. Of course, there is no reason why anyone who has not explored this avenue, should understand exactly how it works. A number of parents I have met have had little, if any, indication from professionals of the benefits of signing. It is vital, in my view, that professionals should actively promote this strand, within the many approaches to Speech and Language therapy.

Music and movement

My approach to Galina’s language acquisition has been a broad one. For example, I sang action songs and rhymes with her from a very early age. When she could sit up, she wanted to use her arms, and enthusiastically attempted to join in with the actions. But her balance wasn’t good, and she easily keeled over. The local physiotherapist provided us with an excellent pillow, with extended ‘arms’, which gave support to Galina’s sides and extended beneath her elbows. It soon became apparent that she needed a little chair with arms. I could not find one of the right height with arms, and so asked the occupational therapist if that department might have such a chair. Nothing could be found, but the occupational therapist ordered a small chair to be made for Galina, and this was the most liberating object imaginable. She could now sit, perfectly balanced and supported, and sign away to her heart’s content, joining in with all our action songs, which she still loves. This chair was an essential part of Galina’s speech and language development.

I remember noticing that before Galina could speak, she always joined in with a short, simple chorus of “La-la-la-la, La-la-la!” when she was listening to one of our action song tapes. She could pronounce the “la” sound perfectly in the sung context, though not, at that stage, in the spoken context, and I felt that the singing of the sound liberated her articulation of it. I sense that singing can be a very useful and, of course, enjoyable route into elements of vocal production.

At the DownsEd conference in Portsmouth, I also met a speech therapist from the Netherlands, who works for the Developmental Dysphasia Foundation [6], based in Amsterdam. She indicated that their organisation considers music to be an important element of speech therapy. Some weeks later, I received a most interesting letter from the team leader of this organisation, who is a child psychiatrist. He wrote about their work at the foundation, and it sounds fascinating. He considers music to be very important, because it is a right hemisphere brain function. Most intriguingly, he explained that the Developmental Dysphasia Foundation is particularly interested in the methods of those who coach top performers: actors, musicians, and athletes. Music is important for their work because it has a strong pre-verbal connotation. They also teach children with Down syndrome to read from the age of three. I’d love to have pursued the work of this particular organisation, but time and money have not permitted. 

One of the best videos for action songs and signed nursery rhymes is produced by the Makaton Vocabulary Development Project [4]. Dave Benson Phillips is the irresistible presenter, and the extensive use of signing in this video is tremendously useful. Most importantly, the video is great fun, beautifully produced, with high production values, and is hugely popular with young children. It doesn’t matter if your child is using Signalong because , its very similar to Makaton and you can pick the signs up easily from the video or adapt them as you wish.

When Galina was only a few months old, a friend sent me a very interesting and practical book: Yoga for the Special Child - A Therapeutic Approach For Infants And Children With Down Syndrome, Cerebral Palsy, and Learning Disabilities [7].  I found a yoga teacher to work with Galina and we have been doing yoga regularly for over two years now. Galina knows and practises many yoga positions. This has helped her to have an awareness of her body. She (Galina) often suggests that we practise our yoga and will fetch her mat and book saying “Come on, Mummy - oga!” We have a glorious array of sparkly stickers and Galina chooses one at the end of each session. 

Speech Sound and Language Cards

The Downs Ed Sound Cards [see 2, 76] were invaluable at an early stage. Galina greatly enjoys using the cards and I continue to use them with her, as a refresher every now and then. The cards show signs and pictures for each sound. The picture and the letter(s) for the sound are on the front, the sign on the back.

I also purchased the Downs Ed Language Cards, a pack of 54 first words - the most commonly used nouns, verbs and other words that occur in a young child’s daily life. The word appears printed on one side, and the picture on the other. An accompanying sheet is provided, giving the various uses and games that can be played with the cards.

Through the same catalogue I also ordered the Winslow Press Verb Cards [8].These are large coloured photographs of people doing various everyday things. I sign whole short sentences for Galina such as “The girl is jumping”, “Grandad is pouring juice”, “The baby is crying.” The latter was instantly a big hit: Galina is utterly grabbed by the photo of the baby crying and we always have to take time to talk about why the baby was crying. She is clearly thrilled by the implicit drama within this photo. I sometimes save this card as the reward and if Galina is not in the mood, I’ll tell her “The crying baby’s coming soon!” These have been very successful in sentence building. She now sometimes spontaneously produces her own fully constructed signed sentences, based on the Winslow Verb Cards: the other day she was watching Grandad at the table and said, as she signed: "Gadad is eating celery", without a sign for celery, since we'd never signed that word before. At present, we are working on a selected target group of twelve verb cards.

We’re also using the Winslow Press Verb Tenses book [8], which is made up of sequences, regular and irregular verbs. There are three pictures of each verb: past, present and future tenses, e.g. “The man is going to brush the dog. The man is brushing the dog. The man brushed the dog.” Grammatical construction is frequently a difficulty for people with Down syndrome. However, the student can undoubtedly benefit from regular rehearsal. Galina is definitely becoming aware of these elements. The other day, I asked her to put the chopped carrots into a pan, simply to keep her occupied while I was cooking. She dropped each piece into the pan from a height saying: “Carrot jumping!” As the carrot hit the pan, she said “carrot jumped!”  She was developing her own game from the verb tense exercises we have been practising.

Through Learning Development Aid (LDA), I have ordered some very interesting and useful cards, which I use to practice the skill of critical thinking. They are called Why? Because [9], and at age three, Galina enjoyed them immensely, despite the information on the box saying they are aimed at children 4 years and above. The set contains paired cards colourfully illustrated and depicting various situations. I sign the whole sentence each time, which works wonderfully as a prompt for Galina, e.g. First card: “Why is the ambulance coming?”. Next card: “Because the lady fell off her bike.” Then lots of discussion follows about the lady’s sore leg and her shopping lying on the ground. First card: “Why are the children putting on their coats, and their hats, and their scarves?” “Because they’re going to make a snowman.”

Since we’ve been using these cards, Galina is attempting to use the future tense, signing simultaneously. Only yesterday, when my son left the house to go to bagpipe practice, Galina said, “Robbie is going to bagpipes.” She was very consciously using the signed/spoken sentence structure we’ve been working on with the Why? Because cards, and the Winslow Press Verb Tenses book mentioned above.

There is no doubt that the rehearsal of these structures is essential for Galina - she finds it very difficult to just pick up and use language ‘on the hoof’, as most children do automatically. She seems to require a conscious, structured repetition in order to construct sentences with all their components. And, indeed, this is what all the research demonstrates.

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