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The Down Syndrome Nutrition Handbook

Reviewed by Tracey Parkin

Diabetes specialist dietician and mother of a child with Down syndrome

I was asked to review this book for two reasons, one because I am a registered dietitian and two as a parent; one of my daughters has Down syndrome. On receiving the book, I was a little overwhelmed as I was told it was a handbook, but in fact it looked more like a telephone directory! The author is an American registered dietitian, who specialises in promoting healthy lifestyles for people with disabilities and their families. She also has a son with Down syndrome. I felt this wealth of experience in particular the practical experience as a parent shone through when reading this book.

The book is divided into 4 key sections:

• Section 1. Building healthy attitudes
• Section 2. Nutrition related concerns for people with Down syndrome
• Section 3. Teaching healthy choices to encourage healthy lifestyles
• Section 4. Learning activities.

Each section is clearly laid out and easy to read. Key facts or helpful hints are summarised in a box, enabling you to access this information more quickly.

Section One

Section One focuses on three topics; successful eating, breast or bottle-feeding and the feeding relationship. This section clearly describes the progress of weaning and how this relates to oral motor skills with lots of suggestions of foods to use. The author focuses on three key aspects:

• physical, getting food into the mouth
• sensory, managing the smell, taste, feel, sight and sound of food
• emotional, managing how you feel about eating.

Clear steps are given to help with problem areas of eating. Understanding why the problem arises makes it easier to understand the type of solutions that are suggested. The question of when to ask for help is also raised and is an important one. As a parent there are so many things that we have to consider and work on with our children as well as our usual family and work lives. It can be easy for things to get out of hand. It's hard to be perfect all the time!

I would have welcomed the chapter on breast-feeding; I struggled with this and there are some very practical ideas on how to position the baby for feeding, keeping them awake for the feed and encouraging correct latching-on. This information could be invaluable to new mums who want to breastfeed. The feeding relationship gets you thinking about how you use food, and patterns of behaviour around food, as these are set early in childhood and strongly influence adult behaviour. Is food used as reward or punishment, are mealtimes associated with stress as you try to get your child to eat? These emotions can have a strong association with food, and can lead to eating when not physically hungry but in response to emotions; when happy or sad; or if the event is stressful, a reduction in food intake as the process of eating is an unhappy one. The positive relationship between food and mealtime experiences is strongly emphasised with lots of ideas on how to engage children.

Section Two

Section Two looks at five areas:

• Nutrition
• Physiology
• Coeliac disease
• Diabetes
• Alternative therapies.

It clearly outlines what happens to food normally during digestion and how people with Down syndrome have different energy requirements, needing 10% less energy than other children and adults their age. The need for nutrients such as vitamins and minerals based on current evidence is the same as outlined for the rest of the population, taking into account age and sex. Unfortunately, all the nutrient reference values listed are American, some of the UK reference values differ as well as being measured in different units. Despite the differing units, the table outlining the nutrients, lists their functions and what happens if deficient. The descriptions give a useful guide as to why these nutrients are needed in the diet.

The signs, symptoms and treatment of Coeliac disease and Diabetes, are clearly explained including on going monitoring for diabetes. Blood test measurements are all in American units mg/dl this may cause confusion as in the UK a different measure mmols/l is used. Differences in healthcare delivery are also highlighted as in the UK we do not have Certified diabetes educators, and access to healthcare and routine tests differ.

Practical information on the management of constipation, a common problem, is also described in detail.

Alternative therapies are discussed clearly and the author presents a balanced view of what is currently known and what is needed from future research in this area. It also provides a clear outline of things to look for when looking at research papers including how to decide whether the research was well designed and evaluate the quality and validity of the study presented.

Section Three

Section Three focuses on practical issues teaching your child to make choices, nutrition education for all ages and stages, food and school, weight management, fitness and activity, cooking and the art of menu planning. This chapter makes excellent use of the author's wealth of practical experience. There are numerous ideas to work at with the child, teenager and adult to help put them in charge of their diet and lifestyle including weight management. The use of symbols and pictures to help with meal planning and snack choices, and a chapter on activity and what is normal activity. This includes looking at heart rate to help determine whether your child is being worked at a level they can manage or being pushed too hard. The 'cooking corner' includes practical tips such as starting written recipes with a reminder to 'wash hands' and finishing with 'tidy the kitchen'! Pictures and colour codes for measures used for those with limited reading ability also clearly outlined and illustrated. Aspects on letting go, giving your child responsibilities is very poignant as it is easy as a parent to do the things that need doing as we are quicker at it. If we always do this, how will they learn for themselves? Good reminders are provided throughout on this theme.

Section Four

Section Four is loaded with activities from learning to balance the diet, what is a serving size, looking at snacks and combinations of foods at mealtimes, activity and very importantly goal setting. The goal setting activities are designed to engage the child or adult in developing their ability to manage their diet and activity through simple steps that they set. There is also discussion on the need to plot these achievements long term to illustrate their successes over time. Planning meals and recipes was very enlightening, lots of practical ideas given including the use of symbols and pictures to enable this process to work for those with limited reading ability making the whole topic of activity and diet accessible to all. Ideas are also given on role-play, as a means of helping groups of children and adults to learn to problem solve.

Overall, I feel this book is well written; it ties together the evidence of what is known with masses of practical ideas, and games to put this information into practice and focuses the whole time on engaging the child, teenager or adult with Down syndrome. Healthy eating and active lifestyle is not what you do to the individual, it's what you share as a family. I feel that this would be an invaluable resource to professionals and the information that it contains would be very useful for parents. The only disadvantage is that as an American publication there are a variety of features, which are not applicable to readers from other countries, e.g. the contact lists for further information, references to legislation and rights in America, blood measurements and nutrient values, are in different units and some values may differ between countries. Also, some of the foods mentioned are American and are not available in the UK. A guide to UK equivalents would be helpful. I felt that the resources are excellent but are based on the 'food pyramid'. In the UK the 'balanced plate' is the tool that is used to get food messages across. However if these resources were adapted I think they would be invaluable to healthcare professionals and parents alike as practical and simple to use.

Allowing for this, as a parent, I would have valued access to the practical information available in this book. If the resources, contacts, measures and specific foods where altered to reflect the UK, I feel it would become a best seller!

Speech and Language Intervention in Down Syndrome

Reviewed by Nicola Grove

Senior Lecturer, Department of Language and Communication Science, City University

The book aims to provide a state of the art review of research into the speech and language development of this extensively researched group of people. It functions as something of a celebration of the tireless work to benefit children and adults at Down Syndrome Education International, edited by two of the foremost experts in the field. The chapters in this volume are all written by people with a proven track record, not only in research, but also in practical intervention.

The book opens with an excellent overview of the themes and topics covered in the book, locating language intervention with individuals firmly in the context of a psychosocial model across the lifespan. This is followed by a series of chapters reviewing work into prelinguistic development, speech acquisition and the associated study of phonological working memory; aspects of language (semantics, grammar and pragmatics), literacy and language development and finally, two chapters covering welcome new ground on the topic of language intervention with older people.

Much of the recent research in Down's syndrome relates to the issue of speech skills; how and when they are acquired in comparison to typical development, and the underlying causes of syndrome-specific problems. The early chapters have a strong focus on this area, and there is some overlap and repetition of information, which could perhaps have been avoided by a broader focus in the chapter on prelinguistic development. Phonological working memory is hypothesised to lie at the root of many difficulties in the acquisition of morphosyntax, and Conners does an excellent job of deconstructing this complex area for the reader. Moving from speech to language, there are authoritative overviews of lexical and morphosyntactic development by Mervis and Rondal. Buckley's chapter on literacy and language development takes these findings forward in a readable and informative account of the exciting recent research in this area, which has profound implications for both education and therapy. Her arguments for text-based approaches are well known, but I felt there was room for some discussion of the role of graphic symbols, particularly for the students who failed to develop beyond a logographic stage of reading. One of the most difficult decisions in special education is whether to go down a text based or a graphic route, in the face of wide scale adoption of literacy through symbols, yet a lack of valid assessment procedures. This registered as rather a missed opportunity for me. Powell and Clibbens, in their chapter on augmentative and alternative communication glance at the role of graphic symbols, but focus primarily on the role of signing in language development, providing a succinct summary of research and welcome counter arguments to those who fear that the introduction of augmentative methods may have a negative impact on speech. Pragmatics is an area of fairly recent interest in the study of Down Syndrome, so it was perhaps to be expected that Abbeduto's chapter on this topic would be less weighty than others. There are sensible suggestions here, but some key references are omitted and the chapter was something of a disappointment when compared to an earlier book edited by the same author¹ which went into considerable detail on referential communication, speech acts and conversation management by people with learning disabilities.

Finally, the two chapters on working with adults are complementary, with Rondal focusing more on academic research findings, and Jenkins providing a sensible, grounded and optimistic account of what can be done across the lifespan.

There is some variation between writers in the extent to which contributors consider the broader context flagged up in the introduction, and the extreme variance in this population, with Buckley's chapter exemplary in this respect. I was also conscious of some discrepancies between the conclusions drawn by different authors – for example relating to morphosyntactic development post adolescence. All in all, however, this is a book to be strongly recommended to practitioners and researchers alike, offering genuinely new insights and ideas in how best to develop communication, and clarifying areas in urgent need of further investigation.

References

1. Rosenberg, S. and Abbeduto, L. (1993). Language and communication in mental retardation. LEA

 

Reviewed by Karen Imrie

Specialist Speech & Language Therapist, Yorkhill NHS Trust, Glasgow, UK

Speech and Language Intervention in Down Syndrome

 

This book includes a collection of papers from recognised authors in the field of Down syndrome. It incorporates chapters dealing with the different aspects of language and communication development i.e. memory and speech. It also includes information relating to A.A.C., literacy and bilingual issues, whilst covering the stages from early intervention through to adulthood.

The authors stress the importance of collaborative and inter-agency working and highlight the key role played by parents and carers as Active Participants in any therapy process. A major strength of this book lies in the authors' abilities to describe recent findings in this area and to transfer this knowledge into practical applications which can be integrated into therapy aims.

The book is well researched and provides the reader with considerable reference links, highlighting the increasing amount of interest and research being carried out in the area of communication.

Speech and Language Intervention in Down Syndrome will be a valuable tool for both Speech and Language Practitioners and Undergraduates developing an interest in this field.

 

Living with Down Syndrome wins a well-deserved media award

Barbara Karpf

Kehrer Design, Heidelberg, Germany; e-mail: barbara.karpf@kehrerverlag.com , website: http://www.kehrerverlag.com/

We are happy to tell you that our book Living with Down Syndrome has won a photobook prize from the German book trade.

Andreas Reeg and myself went to Stuttgart to receive the prize (no money - just honour...) and for an interview with SWR 4 (an important German radio station).

We regard this as an important step from the (natural) interest of people involved with the subject of Down syndrome towards a greater public. Maybe this can help to open some eyes and minds.

We already had quite a lot of good press for the book, mostly in the national and international magazines of organisations related to Down syndrome. The big German magazine Stern will be publishing an article about Andreas Reeg and our book, probably in February (they had to postpone the promised publication date because of the Iraq war).

The book is also selling not too badly – compared to the prognosis of our book distributors – and we have had a lot of orders from the USA.

There has been a first exhibition of the photos in Wuppertal, Germany, and Andreas Reeg is thinking about an exhibition tour. If you have any contacts that might be interested in showing the photos, please let us know.

In the meantime, we hope you enjoy our shared success with us.

Best regards,

Barbara Karpf

Kehrer Design / Kehrer Verlag

 

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