Developmental Journal for Babies and Children with Down Syndrome

Child’s name: Date of birth:

Enter the date and your child’s age in the corresponding box when you have filled out the more detailed material set out in the Journal and have ticked ‘Achieved’ for nearly all the items in a Step. Children are likely to be achieving new things in different Steps at any one time, so don’t forget to check backwards and forwards as well.

Developmental profile

Developmental profile

Early Support

Helping every child succeed

•- a.......…

How to use the Journal

Contents

Welcome 2

What is it and what’s it for? 3

Supporting effective early intervention 3

Using the Journal with other people 4

One set of material to use with different professionals 4

How should the Journal be used? 5

Do it your way 5

Getting started 6

How often? 6

Finding your way around the materials 7

Areas of development 7

Developmental steps 8

Using the Journal 9

Recording progress using the Developmental steps 9

Notes or queries 10

Summary sheets 14

The Developmental profile – getting an overview 14

Worries or concerns 17

Special achievements and things to celebrate 17

Glossary 18

Age norms and expectations 19

Babies and children with Down syndrome 19

Guidelines for typically developing children 20

Guidelines for children with Down syndrome 21

Other resources for families and professionals 24

How the material was developed 25

What parents say

‘A very good, parent-friendly document’.

‘An excellent document for parents to follow as a guide for development of babies and children with Down syndrome. The Steps help parents guide their child in many areas of development.’

‘You can immediately see where your child is up to, and what goals to set.’

‘I’m presently in the middle of the statement process for my 4 year old son with Down syndrome. I could write the ’Parents written contribution’ more confidently and fully as I could see – at a glance – his strengths and weaknesses. I could also evaluate easily his areas of special educational needs and say how I’d like these to be addressed.’

‘The Developmental Journal is like a treasure – I’m discovering so much about what my child has achieved (a pleasant surprise) and becoming aware of the many skills emerging that I need to follow through.’

The Early Support Developmental Journal for babies and children with Down syndrome has been written to help parents and the professionals who work with them.

We therefore consulted with parents across England and with professionals as the material developed, over a two-year period. This collaborative process was essential to the development of the material and we would like to thank everyone who contributed or made suggestions for how the Journal could be improved.

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Welcome

This Journal is to help parents and families record and celebrate children’s development, strengths and achievements through the preschool years, and to identify any areas of difficulty that may need closer attention.

It’s for you and your child.

Celebrating and supporting progress

When a baby is born with Down syndrome, parents often say they don’t know what to expect – they’re not sure how their baby’s progress may be affected, or what to do to help. Keeping this Journal will help you

to see how your child is progressing and to understand the patterns of development that professionals are looking for and asking you to

encourage through therapy and other activities. We hope it will also help you to see where a child with Down syndrome is likely to have more difficulty than other children and may need some extra help.

Start when you feel ready

The Journal allows you to record your child’s development from birth through the preschool years. You can start using it whenever you feel that the material would be helpful to you.

Use it with other materials

The Developmental Journal is designed to be used with the Early Support Information for parents booklet on Down syndrome. The content of

these two publications has been written to work together. The Journal is designed to help you support and record your child’s progress. The

Information for parents booklet has additional detail on the development of children with Down syndrome, the professionals who can help you and where you can find extra information and practical resources. Both these publications can be used alongside other Early Support materials.

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Read more about other Early Support materials and how to get hold of them at the end of the booklet

What is it and what’s it for?

The Developmental Journal for babies and children with Down syndrome is a tool to help you track and understand development in your child and to share that information with other people.

It:

• helps you record and celebrate change, achievements and progress in the early years

• helps you understand the significance of what your child is doing now, what they will do next and how you can support their progress

• provides an on-going record of your child’s achievements, progress and development as they learn to do new things

• recognises the important information about your child that you have and makes it easier for you to share that information with other people

• helps professionals work in partnership with families by providing a shared basis for discussion

• supports effective early intervention services by improving everyone’s understanding of the developmental processes involved.

Supporting effective early intervention

Most babies with Down syndrome are identified during pregnancy or soon after birth. This early identification creates opportunity because it enables services and support to be put in place for babies right from the start. Good services from early on benefit babies and families – both at the beginning and in the longer term.

A record of your child’s individual progress including strengths, achievements and needs, helps you and those supporting you to devise an individual

early intervention programme that works for you and for your child. Small developments happen every day when professionals aren’t there to see – but you are! Keeping a record of achievements helps you to discuss them with other people and to understand more about how your child learns.

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Using the Journal with other people

The Journal comes alive when you talk about it with other people. You can discuss it with anyone you like – your family, carers, therapists, teachers and other professionals.

One set of material to use with different professionals

Families sometimes say the different words used by different professionals are confusing for them. We hope that the Developmental Journal will help everyone ‘talk the same language’ by providing a single, shared frame of reference. Families can share progress and concerns with

all the professionals they meet and be confident everyone is using the same information. This should make asking questions at appointments easier and ensure that families feel better-informed and that they are listened to. The Journal promotes equal partnership between families and professionals and joint working on behalf of the child.

If you’re a parent or carer, the Developmental Journal can help you to:

• celebrate and record the achievements your child makes – large and small

• recognise the importance of what your child is doing and of each new thing they learn to do

• share your observations with other people, including the professionals working with you

• ask questions about progress

• be clear about what sorts of things everyone is expecting your child to do next

• have a clearer idea about what you can do to help

• have an up-to-date, accessible record of your child’s development which can be copied, given to professionals and used to support discussion about your child at appointments or when reports need to be written.

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If you’re a professional, the Developmental Journal is designed to:

• provide a consistent, standard way to record progress that covers all the relevant areas of development

• identify aspects of development which might need to be followed up further

• support your discussions with families and other professionals

• help you work in partnership with families

• help you give better advice.

How should the Journal be used?

Do it your way

There are a number of different ways in which you may decide to use the Developmental Journal. You may want to:

• fill in the record on your own and then share it with professionals later

• ask professionals to discuss the Journal with you every now and again and fill it in together

• use it to talk with professionals about how your child is doing, but not fill it in – some people like to ask someone else to fill it in for them.

The whole Journal can seem a bit overwhelming and families have different ideas about how they want to use it. This is fine – please use it in whatever way you find most helpful.

We’ve provided material at two levels of detail, so you can choose how much information you want to use. You may feel differently about this at different times – sometimes a quicker version will be OK, while at other times you may want to look at things in more detail.

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Getting started

If you begin using the Journal early, in the first few months of your baby’s life, start at the beginning. You’ll soon become familiar with how to record new achievements.

If you start using the Journal when your child is a bit older, you don’t have to go back and fill in all the earlier material. For older children, we suggest using the Summary sheets to help you find a good starting point. Think of the things your child is currently able to do and a few new things they’ve learnt to do for the first time recently. Flick through the Summary sheets until you find something that describes what you’re thinking about. This should guide you towards the material that’s most relevant to your child’s current stage of development and indicate the best place to start keeping a record.

You’ll probably find that your child is developing skills that fall across several different Steps at the same time – for example, at any given time a child may be developing motor skills in Step 2, communication skills in Step 3 and self-help skills in Step 4. So flick backwards and forwards to look at the different sections in a number of different Steps to find your way around and to get a general idea of where you are, before you start to write things down.

How often?

Most parents say they prefer to fill in the Developmental Journal regularly so they don’t forget all the different little things that their child has learnt to do. We recommend filling it in every few weeks when your child is very young, and then filling it out on a monthly or two monthly basis, as skills become more complex and take longer to learn.

Filling the Developmental Journal in regularly ensures any areas of difficulty are identified as they emerge and allows everyone involved with your child to target their interventions to provide support in these areas.

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Finding your way around the materials

Areas of development

The Developmental Journal describes children’s development under five headings:

Communication

Communication describes the many different ways that your child interacts with other people, such as looking, pointing, smiling and talking. It includes how your child pays attention to other people and listens to them, as well as how they understand and use language themselves.

Social-emotional

Social- emotional development focuses on how children learn who they are, what feelings they have, how to behave and how to develop relationships.

Cognition and play

Cognition and play looks at the ways your child develops and learns through playing, how they develop thinking and reasoning skills, and how they process and remember information.

Motor and sensory

Motor and sensory development focuses on how your child develops gross and fine movement abilities and uses senses and movement to explore the world.

Self-help

Self-help looks at how your child develops practical independence and learns skills that help with feeding, sleeping, washing, toileting, and dressing.

While it’s helpful to chart progress under these five headings, in real life, progress in one area influences how a child learns everything else, so it’s helpful to think about your child’s progress across all five areas. We have divided the Journal into Steps to help you to do this.

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Children with Down syndrome often show more variation in their progress in different areas of development than other children, so expect to

see faster progress in some areas than others. The way the Journal is organised highlights where this is the case and will help you to see more clearly exactly where your child needs extra help.

It’s important to realise that these five areas of development are what professionals use to describe children’s progress. There will be many

other things your child is doing and learning that will be equally important for you, if not more so – for example, the types of music or food they

like and what makes them laugh. Observations of this kind can also be recorded in the Journal. This information can often be particularly helpful for professionals meeting your child for the first time or as they try to understand you child’s particular characteristics.

Developmental steps

The Developmental Journal is presented in the form of 11 Developmental steps, beginning in the first weeks of life. The skills and behaviours in each Step describe what an average, typically developing child achieves in each of the five areas of development at that stage in development.

Most babies and young children with Down syndrome can achieve all of these behaviours, but may take longer to do so than other children.

Steps 1 and 2 only have been simplified into three areas of development: engagement and interaction with others; sensory-motor development and play and self-help. When children are very young, behaviours tend to be more integrated and difficult to separate out. For example, a young baby reaching out to grasp a toy is using sensory, motor and cognitive skills.

The simplified areas of development in the first two Steps are designed to reflect the integrated nature of early development.

There are also Summary sheets, a Developmental profile and a Glossary. You can read more about each of these in the next section.

Read more about this in Age norms and expectations

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Using the Journal

Recording progress using the Developmental steps

Within each of the 11 Developmental steps in the Journal you can record your child’s progress in the five areas of development (communication, social-emotional development, cognition and play, motor and sensory development and self-help).

For each item listed for a Step, there are three different columns for you to complete:

Emerging Tick and date this column the first time you notice your child beginning to do something that demonstrates this skill or behaviour, even if it’s only an attempt.

Developing Tick and date this second column when you notice your child using a skill or behaviour more often, as they become more skilful at it.

Achieved Tick and date this third column when you see your child doing something often, demonstrating the skill or behaviour independently and with confidence in a number of different situations – for example, in different rooms and different houses, with different toys, in interaction with different people etc.

You do not have to use all three columns, all of the time. For example, you may only notice a new speech and language or motor skill once it’s already quite well established – i.e. it’s ‘developing’ or ‘achieved’, rather than ‘emerging’. Only use all three columns if they’re helpful to you as you track your child’s progress over time.

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In the communication sections, you’ll notice there are different boxes for noting down when your child is signing a word, and when they speak it. This is an important distinction for many children with Down syndrome.

If you use signs with your child, they’re likely to sign more words than they can say in the early days. It’s important to record these differences as your child moves forward.

Notes or queries

There’s a column on all the sheets for you to add comments, if you wish to do this. You might want to describe what your child does that demonstrates they’re developing the particular behaviour or skill being recorded, for example, or you might want to note down any questions

that you have for the professionals about what your child is doing. It could also be a place to record favourite toys, if they seem to encourage the behaviours you’re seeing and trying to encourage.

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Cognition and play Developmental Journal · Step 3

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Communication Developmental Journal · Step 4

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Motor and sensory

Mother started keeping Journal November 2005

Developmental Journal · Step 7

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Summary sheets

Each Developmental step has a Summary sheet that lists the key milestones in each area of development. You can complete these at

the end of a Step as a summary of what has been happening and may want to copy them to share with others. Some people like to fill in the Summary sheets with a professional, because they support general discussion about how things are going and what comes next. If you don’t want to use the full set of material for a Step, the Summary sheets also provide a shorter alternative.

The Developmental profile – getting an overview

At the beginning of the Journal, we have included a Developmental profile that helps you to see the pattern of your child’s progress over time as they move through Developmental steps. It allows you to summarise what’s going on, once you have filled out the more detailed tables and it gives you a ‘bird’s eye’ view.

Once you have ticked ‘achieved’ for more than half of the items for a particular developmental area in a Step, enter the date in the

corresponding box on the profile sheet. This will help you to record and celebrate progress over time and see at a glance the particular areas of strength and difficulty that your child has.

For example, a child may have moved on to Step 6 in the motor and sensory and social-emotional areas, but still be at Step 4 for

communication. Within the communication area, a child may be up to Step 8 for attention, listening and understanding, but still be at Step 4 for expression.

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Child’s name: Gemma B

Date of birth: 4/11/04

Enter the date and your child’s age in the corresponding box when you have filled out the more detailed material set out in the Journal and have ticked ‘Achieved’ for nearly all the items in a Step. Children are likely to be achieving new things in different Steps at any one time, so don’t forget to check backwards and forwards as well.

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Developmental profile

Developmental profile

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This information helps identify areas to target for further learning support and intervention, and particular strengths that can be used to support a child’s development in other areas. Some of the professionals working with you may ask to photocopy the Developmental profile, as it provides a useful, at-a-glance summary of what is going on for people who are working with you and your child.

Worries or concerns

At times, your child may behave in ways that worry you. We have left a space at the end of each Step for you to note down these concerns so that you can discuss them with the professionals you meet. The Journal provides you with lots of opportunities to record all the new positive behaviours and skills your child achieves. However, children very often develop ‘difficult behaviours’ and it’s important to discuss these as well

– for example, how to set boundaries and help your child learn to behave in socially appropriate ways for children of their age. Sometimes children show ‘different’ rather than ‘difficult’ behaviours such as wanting to play in repetitive ways with toys or objects for longer than is usual for other children and it’s important to discuss this as well.

This is an important space in the Journal, as we know that it helps children to move forward if help and support is given early – in other words, as soon as you notice behaviours that worry you.

Special achievements and things to celebrate

As has been explained, the Journal is organised in areas of development and Steps that reflect the way professionals describe child development.

At the back of the Journal, you’ll find another page where you can add details of any other special achievements and things you’d like to celebrate that are not covered in the tables. Use this section to identify

important personal interests as well, if you’d like to do this. You can make notes about toys that your child enjoys playing with, activities which

they particularly like or dislike, or their favourite foods. You could note the TV programmes they choose to watch, the places they enjoy going, or the people they look forward to seeing. The richer the description of

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your child, the more chance you and the professionals you meet have to individualise early intervention activities to meet the needs of your child – in other words, to make what they do enjoyable and effective.

Glossary

Throughout the Developmental Journal there are words in blue, like this. Blue text means that terms are explained and defined in the glossary at the end of the Journal. The idea is to give you access to the terminology or ‘jargon’ that you may hear being used by professionals as they talk about child development that may not be familiar to you.

A final comment

When you’re in the habit of using these records, there’s a danger you may focus on Developmental steps or areas of development, rather than seeing your child as a whole. It’s important for everyone to keep reminding themselves about all the ways in which you and your child are succeeding and developing, and to celebrate success and progress whenever and however it happens.

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Age norms and expectations

Babies and children with Down syndrome

Each child is an individual and it’s important to remember this when you compare your child’s development with any other child or group of children. Children with Down syndrome vary as much in ability, likes and dislikes, personality, and strengths as any other population. What’s important is that your child continues to make progress in different areas at their own pace and in their own way – not how fast or slowly this happens.

For most children with Down syndrome, progress in all areas of development is affected in some way, with some aspects of development progressing faster than others – for example, children’s social and emotional understanding and their ability to communicate non-verbally is often more advanced than their motor development or progress with talking.

You may also want to find out more about ‘typical’ patterns of development that emerge when children with Down syndrome are considered as a group. There is a ‘developmental profile’ with characteristic strengths and characteristic difficulties. You can read more about this in the Early Support Information for parents booklet on Down syndrome. You may already have been given this book with this Journal. If not, you can find out more about Early Support and about how to get hold of a copy at the back of this publication.

It’s also important to remember that children who experience more health difficulties in the early months and years of life are likely to experience more developmental delay than their peers without health difficulties.

However, once medical issues have been resolved and are under control, children typically go on to make progress in all areas.

Many children who seem to be making rather slow progress in the early months put on a spurt later. So please keep in mind that experts who have worked for many years with children with Down syndrome are not able to make reliable long-term predictions of what a child will achieve later on in life from their progress from birth to 5 years of age. Guidelines should not

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and cannot therefore be used to try to predict the future development of any child with Down syndrome.

Because all children show wide variation in their patterns of development, the guidance on the rates of development that might be expected when a baby has Down syndrome and how this varies from ‘typical’ development given below must be treated with extreme caution. The tables offer a rough guide only. We have included the information only because some parents asked for it – if it’s not helpful for you, don’t use it.

Guidelines for typically developing children

The following table provides broad guidelines for ‘typically developing’ children considered as a group rather than for any specific child. For most children without Down syndrome, progress on items in the Steps described in this Journal overlap, and children achieve skills in different Steps at

the same time. Each child moves forward at their own pace and in their own way. Some children make steady progress and some children move forward in spurts, with periods of consolidation in between.

Developmental Step

Step 1

Step 2

Step 3

Step 4

Step 5

Step 6

Step 7

Step 8

Step 9

Step 10

Step 11

Approximate age/developmental level for typical developing children

0 – 3 months

2 – 5 months

4 – 7 months

6 – 10 months

9 – 13 months

12 – 16 months

15 – 19 months

18 – 22 months

21 – 25 months

24 – 31 months

30 – 36 months

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Guidelines for children with Down syndrome

The information about children with Down syndrome presented below is the best that can be provided at present. The figures are based on information in published research studies, but these studies are based

on relatively small numbers of children and more research is needed, to provide more reliable norms. The Developmental Journal, when it is in use around the country, may help us to collect some of this information in coming years.

The following charts are based on the best available data¹ for some key milestones identified in the Developmental Journal in each area of development. Each chart shows the range of ages at which a child with Down syndrome may achieve each milestone, as well as the average age that the data indicates they might do so. Each chart also shows the

Step in the Developmental Journal for that milestone. Further detail about expectations for each area of development can be found in the Down Syndrome Issues and Information series of publications¹.

Social and self-help skills

Steps in Developmental Journal

smiles when touched and talked to

1

feeds self with biscuit

4

uses spoon or fork

6

dry during the day

10

bowel control

10

dresses self partially (not buttons/laces)

11

0

1

2

3

4

5

Ranges and average ages for achieving steps

age range average age

¹ Down Syndrome Issues and Information (2000 – 2006) contains up-to-date reviews of the information available on the development of children with Down syndrome and guidance on evidence based practice. Available in print and on-line – see www.downsed.org

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Communication

Steps in Developmental Journal

reacts to sounds

1

vocalises in response to smiles and talk from others

2

turns to sound of voice

2

gains attention by making sound variations (not crying)

3

says da-da, ma-ma

3

imitates sound

4

responds to familiar words

5

responds to simple verbal instructions

6

says first word(s)

6

points to 3 body parts on request (eg eye, nose, mouth)

7

uses words spontaneously and to communicate

0

1

2

3

4

5

Ranges and average ages for achieving steps

age range average age

Gross motor skills

Steps in Developmental Journal

independent head control

2

rolls from stomach to back

3

lifts head and chest while lying on stomach, supporting body on arms

3

sits without support

4

crawls

4

pulls to stand using furniture

4

stands alone

5

walks alone

6

walks upstairs with help

7

runs

7

jumps on the spot

10

11

rides a tricycle 15 feet

0

1

2

3

4

5

Ranges and average ages for achieving steps

age range average age

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Fine motor and cognitive/adaptive skills

Steps in Developmental Journal

follows object with eyes, in circle

1

grasps dangling toy

3

transfers objects from hand to hand

3

shakes rattle to make sound

3

imitates movement

4

takes object out of box

4

finds object hiddden under cloth

5

claps hands

5

rolls ball

5

makes mark on paper with crayon

5

puts object in cup

5

picks up tiny object using pincer grasp with thumb and forefinger

5

builds a tower of 2 cubes

6

0 1 2 3 4

5

Ranges and average ages for achieving steps

age range average age

These milestones have been drawn from the following sources:

Down’s syndrome: an introduction for parents

Cunningham

London: Souvenir Press (1987)

Helping your handicapped baby Cunningham and Sloper London: Souvenir Press (1978)

Language development in children with special needs

Johansson

London: Jessica Kingsley Press (1994)

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Teaching the infant with Down syndrome

Hanson

Austin, Texas (1987)

Gross motor skills in children with Down syndrome

Winders

Bethesda, MD, Woodbine House (1997)

Other resources for families and professionals working with children with Down syndrome

A wide range of materials are available to parents from the following organisations:

• The Down’s Syndrome Association – www.downs-syndrome.org.uk

• The Down Syndrome Educational Trust – www.downsed.org

• Down’s Syndrome Medical Interest Group (DSMIG) – www.dsmig.org.uk

• I Can – www.ican.org.uk

• Makaton Vocabulary Development Project – www.makaton.org

• The Signalong Group – www.signalong.org.uk

The Early Support Information for Parents Booklet on Down syndrome lists further useful contacts and organisations.

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How the material was developed

The material was developed at the Down Syndrome Educational Trust in Portsmouth, with the support of an advisory group.

The development team comprised:

Clare Tatterson Julie Hughes Gillian Bird Katie Hillier John Oates John Clibbens Gaye Powell

Professor Sue Buckley

Over 70 families with children under 5 attending the Early Development Groups in Portsmouth were involved in commenting on the materials and piloting their use over a two-year period. In 2006, events were held in Plymouth, Bristol, Sheffield, Nottingham and Bradford, involving a further 110 families with young children and professionals. The final consultation events were facilitated by members of the development team and by the Down’s Syndrome Association.

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Advisory group

Chair

Prof Sue Buckley OBE Director for Research and Training, The Down

Syndrome Educational Trust and Emeritus Professor of Developmental Disability, Department of Psychology, University of Portsmouth

Psychologists

John Oates Senior Lecturer in Developmental Psychology, Centre for Childhood, Development and Learning, Open University

John Clibbens Professor of Applied Developmental Psychology,

Faculty of Health and Social Work, University of Plymouth

Ann Haig Early Intervention Specialist, Down Syndrome Ireland

Gillian Bird The Down Syndrome Educational Trust Clare Tatterson The Down Syndrome Educational Trust

Jane Beadman Educational Psychologist, representing the

Down’s Syndrome Association

Speech and Language Therapists

Nicola Grove Senior Lecturer, Dept of Language and

Communication Science, City University

Gaye Powell Head of Speech and Language Therapy

Services, Plymouth, representing the Royal College of Speech and Language

Therapists

Leela Baksi Symbol UK (specialising in services to children with Down syndrome). Symbol UK is advisor to the Down’s Syndrome Association

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Karen Imrie Specialist Speech and Language Therapist and

Advisor to Down’s Syndrome Scotland

Katie Hillier The Down Syndrome Educational Trust

Teachers/Portage

Annie McGee Head of Plymouth Early Years Inclusion Service

Jonty Rix The Centre for Curriculum and Teaching Studies, Open University and member of the Portage National Committee

Julie Hughes The Down Syndrome Educational Trust

Sue Lewis Director for Educational Development and Inclusion, Mary Hare, Newbury and lead for the development of the Early Support Monitoring

Protocol for Deaf Babies and Children in 2003/4

Medicine and professions allied to medicine

Sarah Crombie Association of Paediatric Chartered Physiotherapists

Dr Liz Marder Consultant Community Paediatrician,

Nottingham and Chair of the Down’s Syndrome Medical Interest Group (DSMIG)

Mary Joyce Clinical Specialist, Paediatric Occupational Therapist, Southend University Hospital NHS Foundation Trust, representing NAPOT

Lorraine Grieve Specialist Health Visitor, Child Development

Centre, Portsmouth and representative from national SIG

Voluntary organisations

Carol Boys Chief Executive, Down’s Syndrome Association

Julian Hallett Development Director, Down’s Syndrome

Association

Cliff Lake Chair, Down’s Heart Group

Leslie Campbell MENCAP

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Down Syndrome Educational Trust

The Down Syndrome Educational Trust (DownsEd) is a leading international charity focused on the education and development of individuals with Down syndrome. Since 1979, researchers at the Trust have undertaken pioneering research into the development and education of individuals with Down syndrome. This research has helped identify

a range of practical strategies to promote the development of children with Down syndrome. All of the Trust’s services and publications draw on the evidence of this research as well as extensive practical experience.

The Trust:

• publishes a broad range of information and guidance on Down syndrome – in print (including the Down Syndrome Issues and Information series of books) and online.

• runs training workshops and lectures for parents and professionals across the UK and throughout the world.

• offers individual advice and support through a free AdviceLine service and consultancy services for families.

• supports inclusion in education by providing expert training, support and consultancy for teaching staff and education authorities.

• provides early intervention services for babies and pre-school children to help parents give their children the best start in life.

• operates a specialist mail order service selling books

and teaching resources for children with Down syndrome.

The Down Syndrome Educational Trust

The Sarah Duffen Centre, Belmont Street, Southsea, Hampshire PO5 1NA

Tel: 023 9285 5330

Fax: 023 9285 5320

Email: enquiries@downsed.org

Web: www.downsed.org and www.down-syndrome.info

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Early Support

Early Support is the central government mechanism for achieving better

co-ordinated, family-focused services for young disabled children and their families across England. It is developing at a time of significant change, as part of the restructuring of children’s services in response to Every Child Matters and alongside new integrated assessment, information

and inspection frameworks for children’s services.

Early Support builds on good practice. It facilitates the achievement of objectives set by broader initiatives to integrate services, in partnership with families who use services and the many agencies that provide services for young children.

To find out more about the Early Support programme visit www.earlysupport.org.uk

If you would like a copy of the other Early Support publication mentioned in this booklet, which is available free of charge, please ring

0845 602 2260 and ask for the following:

Information for parents booklet on Down syndrome ESPP13

The booklet provides general information for families with young children with Down syndrome.

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Copies of this publication can be obtained from: DfES Publications

PO Box 5050

Sherwood Park Annesley

Nottingham NG15 0DJ Tel: 0845 602 2260

Fax: 0845 603 3360

Textphone: 0845 605 5560 Email: dfes@prolog.uk.com

Please quote ref: ES49

© Crown copyright 2006

Extracts from this document may be reproduced for non-commercial education or training purposes on condition that the source is acknowledged.

PPMRP/D32/19684/0806/14

www.earlysupport.org.uk

We acknowledge with thanks the contribution of the following organisation in the production of this resource.

Developmental journal

for babies and children with down syndrome

Step 1

Developmental Journal for Babies and Children with Down Syndrome

An overview of development during Step 1

Learning and communicating

It may seem as if all that newborn babies do is eat, sleep and cry, but they’re learning and developing skills from the moment they’re born. They communicate as well – they just do it in their own way. They can use different sorts of cries to tell you whether they are hungry, tired or in pain and are likely to be especially interested in your face and your voice – sometimes they’ll even copy your facial expressions and mouth shapes.

Babies with Down syndrome are keen to communicate, but may find it more difficult to express themselves using sound, because of the shape and size of their mouth and tongue. It’s important to talk with your baby right from the start of life, because they like to watch your face and listen to you. They’re likely to pay particular attention to ‘baby-talk’, that is, when you talk in short simple sentences, using a lively tone of voice and lots of facial expression and gesture. As well as repeating what you say, it’s important to allow enough time and space for your baby to join in. It’s good to talk to your baby about what they’re doing and might be thinking – it helps the two of you develop your relationship and encourages them to communicate.

Emotional needs

Babies have a basic need for warmth, food and physical care, but close, warm relationships with their parents and other members of the family are just as important. Feeling emotionally secure is crucial for development. Responding to what your child is trying to communicate, helps them to learn to manage and regulate their own emotional state. These ‘self-regulation’ skills are key, helping children to calm themselves or settle themselves to sleep. Most babies with Down syndrome are emotionally expressive, and sensitive to other people’s emotions, but they need you to react in ways that they can understand. Sometimes, you may need to exaggerate your reactions and wait a bit longer for your child to respond than you might do with other children.

Play and movement

Cuddling, stroking and, for some babies, massage, are all important ways of comforting, soothing, reassuring and showing love. A few babies are very sensitive to touch, so you need to learn from your baby’s reactions and use touch in a way that’s pleasing for both of you. Touch is another way of communicating, and touch games like ‘pat-a-cake’ can be a good way of playing with babies. Holding your baby in different positions, while you support their head and neck, can also be a fun way of giving them an early experience of using muscles. Quite early on, babies begin to move their arms to reach out for objects and you can help them to learn by playing games that involve these movements.

Routines help

Learning about predictable events helps babies feel secure in their world. Established and regular sleeping, feeding and bathing routines help them predict what’s going to happen next. To avoid difficulties with settling and sleeping later on, it can be helpful to lay babies down when they are awake at least once a day. You can also help by using simple words to talk about what’s happening. This is a good way for babies to begin to learn about communication and what talking is for.

Each child is unique

Babies with Down syndrome vary a lot in how fast they progress – even when everything is going well. Many children need medical help early on and this may significantly affect their development in the short term. When illness or other setbacks slow progress down and babies seem to forget things they’ve already learned, it doesn’t mean that you’re not doing enough to help your baby – you can help them make progress once these other issues have been resolved. In the early days, sorting out medical difficulties is the priority. Every child is an individual, with their own unique set of needs.

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Engagement and interaction with others Developmental Journal · Step 1

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Engagement and interaction with others continued Developmental Journal · Step 1

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Sensory-motor development and play continued Developmental Journal · Step 1

Thinking about this Step as a whole, these are the things that I am concerned about and would like to ask questions about:

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Summary sheet Developmental Journal · Step 1

Sensory-motor development and play

Interested in new experiences (e.g. shows renewed interest if you present a different toy)

Responds to touch ‘games’ (e.g. stroking tummy/feet, tickling, kissing, blowing on tummy, etc.) by stilling, smiling, gazing or waving arms and legs etc.

Can lift head when lying on tummy and move it from side to side

Closes hand firmly around objects placed in palm

When lying on back or propped up, moves eyes to follow face/object moving slowly from side to side close to face

Any notes or queries on how your child does this

Achieved

(date and child’s age)

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Summary sheet continued Developmental Journal · Step 1

Thinking about this Step as a whole, these are the things that I am concerned about and would like to ask questions about:

Developmental journal

for babies and children with down syndrome

Step 2

Developmental Journal for Babies and Children with Down Syndrome

An overview of development during Step 2

Into Step 2 – Making sounds and taking turns

Babies at this stage of development can ‘talk’ to you in more ways. They’re beginning to control their voice and use different sounds to express different things. They start to blow raspberries, to squeal, squeak and grunt, and to chuckle and laugh. They’re often especially interested in watching other people’s faces. You can encourage them by imitating and responding to what they do. Most babies love to join in simple

‘conversations’ – you can help by leaving pauses for your baby to use when they reply to you. Learning about taking turns and responding to what you say is important for later communication. Sometimes babies at this stage start to ‘coo’ when you’re playing and ‘talking’ together. The most helpful thing that you can do is to talk to your baby about everything you’re doing together. Using familiar words for regular routines helps them to understand and anticipate events in their world.

As well as reacting to the different sounds you make, babies are also learning about other sounds and noises. They start to show an interest in familiar sounds in the home and show they’re beginning to understand what they mean. For example, they may learn that running water sometimes means a bath is about to happen, and so they get excited when they hear this sound.

Emotions and feelings

Babies begin to express a wider range of emotions. They find ways to show you they’re happy or sad, hungry or tired, excited or bored. You can help by responding to all the emotional signals they give – positive and negative. This helps them learn to trust you as a source of comfort and security and to soothe themselves. Some babies settle to sleep more easily at this stage, but many will still have unsettled sleeping patterns and wake in the

night. If you would like some help with this, ask one of the professionals supporting you, for example, your health visitor. Babies with Down syndrome usually respond to the same ways of encouraging good settling and sleep patterns as other children.

Moving and reaching

Babies at this stage of development are getting better control over their bodies. One of the first things they can control is their neck muscles, so they begin to hold their head steady and turn it to follow sights and sounds. They can also use their hands and arms more purposefully and will start to reach for objects and grasp them. You can help and encourage development by playing with them using toys, like rattles, that fit their grasp and make interesting sounds when shaken. Toys that light up, move or vibrate are likely to be favourites at this stage and they can help babies begin to learn about cause and effect (‘When I touch this, it makes a noise’). Remember that when playing with your baby, it’s important to match your pace to theirs – leave them plenty of time to take their turn.

You can help babies strengthen their muscles by holding them while they exercise their arms and legs, or by playing with them on a play-mat so that they can begin to learn how to roll and turn their body. Some babies with Down syndrome benefit from extra help with developing muscle strength and need more practice to learn these sorts of things.

Another way that babies in Step 2 are exploring the world is by holding objects to their mouths. They start to suck their thumbs or fingers and they’re likely to start looking around at their surroundings more. You can make what they look at more interesting using brightly coloured pictures, mobiles and other things to catch their attention.

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Developmental Journal for Babies and Children with Down Syndrome

An overview of development during Step 2 continued

Routines and settling

Continue developing regular feeding and sleeping times to give babies a sense of security and help them anticipate what’s likely to happen next. Establishing calm routines in the early days, and laying babies to settle themselves to sleep so that they can enjoy their cots or sleeping places, can prevent difficulties later.

Moving on

Babies don’t necessarily master all the things in Step 2 before they start doing things in Step 3. The Journal simply describes typical patterns of development as new behaviours and skills are learnt. Babies with Down syndrome progress in much the same way as other babies within each developmental area (for example, communication, social- emotional or motor and sensory) but they may not make progress in all areas in the same way as other children do. Remember that all children are individuals and follow their own patterns, but you may find it helpful to know that many children with Down syndrome progress well with social-emotional development, social understanding and non-verbal communication in the first year of life, while motor development is often more delayed.

Engagement and interaction with others Developmental Journal · Step 2

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Engagement and interaction with others continued Developmental Journal · Step 2

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Sensory-motor development and play Developmental Journal · Step 2

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Sensory-motor development and play continued Developmental Journal · Step 2

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Self-help Developmental Journal · Step 2

Thinking about this Step as a whole, these are the things that I am concerned about and would like to ask questions about:

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Summary sheet continued Developmental Journal · Step 2

Sensory-motor development and play

Brings objects to mouth to explore them

Repeats actions that have an effect (e.g. kicking or batting mobile to create movement, banging side of cot to make noise etc.

Looks from one object to another and back again. Objects may be moving or still – this is termed ‘shifting visual attention’

When lying on tummy, lifts head up in the middle and uses forearms to support

Starts to reach out to toys or objects (this is not yet accurate)

Any notes or queries on how your child does this

Achieved

(date and child’s age)

Thinking about this Step as a whole, these are the things that I am concerned about and would like to ask questions about:

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Developmental journal

for babies and children with down syndrome

Step 3

Developmental Journal for Babies and Children with Down Syndrome

An overview of development during Step 3

Into Step 3 – Learning to understand words and make sounds

Children become more active and begin to explore their world. They’re more confident about reaching out and grasping things and take more interest in their surroundings. They also begin to recognise objects and people, and to understand how things go together.

For example, they may begin to associate a spoon with feeding. If you talk with your child about the things they’re showing an interest in, it helps them to learn that things have names. This builds the foundations for language.

Even though they are not yet speaking, children are learning a lot about language and communication. It’s still important to repeat things and to talk in simple, clear ways with your child, and to talk expressively. One of the important things you can do at this stage is to share experiences with your child. Point to things, talk about what they’re doing and talk while you play with a toy together – this all helps the two of you focus attention on the same things. Once your child can follow your pointing or look where you’re looking, encourage this. Some parents find that using gestures and signs is a good way of communicating. Since children with Down syndrome often have some difficulties with listening and talking, use whatever works well to build two-way conversation with your child. If they imitate you, for example, encourage this in your times together. If you would like more information about using sign, look at the Early Support Information Booklet for Parents on Down Syndrome.

Children have already learnt a lot about the sounds of language by listening to people talking. As they move through Step 3, they begin to use more speech-like sounds themselves. Some children find it hard to remember things from sound alone, so you could start using simple picture books and name the objects, people or animals in the pictures. Children start to babble, linking speech sounds together and saying things like ‘ba-ba’.

Encourage your child by copying their babble sounds back and then introducing new ones for them to try – for example, copy your baby’s ‘ba-ba’ and then try ‘da-da’. It’s particularly important to encourage babies with Down syndrome to listen to and copy speech sounds, as this helps them to develop clearer speech later on.

Learning more about people and about the world

Children begin to show more signs of picking up on other people’s behaviour. They’re likely to respond clearly to your facial expressions and how you talk, and also to respond more to other people’s emotions. Your child may begin to indicate they recognise you

by ‘greeting’ you and by behaving differently when with strangers. Children at this stage are more active about trying to get your attention and in general they explore the world more actively. They start to find out about objects by banging or shaking things that they’re holding.

Children also begin to show more signs of wanting things and express their needs more purposefully. Responding to this and rewarding them is especially important at this time – it encourages your child to communicate with you and with other people. Often, children at this stage begin to use sounds or gestures more consistently to tell you what they want. This is also worth encouraging.

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Developmental Journal for Babies and Children with Down Syndrome

An overview of development during Step 3 continued

Moving, playing and learning

Children at this stage of development are gaining more control over their hands, arms, legs and feet. They’re able to hold objects and turn them round while they look at them. They’re more precise when they reach for things and grasp them and may be able to start putting pieces of food in their mouth. It’s easy for them to get frustrated when their wish to do things is out of step with what they are able to do. You can help by matching the things around them to their ability level, and reassuring them and giving them something easier to do if they do get frustrated. Children at this stage learn a lot when you help them to do things they can’t easily do by themselves, but can manage with a little support from you. As well as giving them experience of success, this helps them to prepare for new and different challenges in the future. You may also need to give your child physical support – if they’re struggling to stay sitting upright, they won’t be able to concentrate on a new activity.

Although children are making sense of the world about them right from the moment they are born, it’s more obvious now that they’re noticing things and thinking about them. You may see your baby staring intently at something interesting, like a television programme or an unfamiliar person. This provides good opportunities for you to comment on what they’re looking at.

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Communication continued Developmental Journal · Step 3

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Social-emotional continued Developmental Journal · Step 3

Cognition and play

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Cognition and play continued Developmental Journal · Step 3

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Motor and sensory continued Developmental Journal · Step 3

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Self-help Developmental Journal · Step 3

Thinking about this Step as a whole, these are the things that I am concerned about and would like to ask questions about:

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Motor and sensory	Achieved (date and child’s age)	Any notes or queries on how your child does this
When lying on tummy, can lift head and chest and support self with straight arms and flat hands
Takes weight through legs and bounces up and down when held in a standing position
Plays with objects by banging, shaking, turning them around in his/her hands
Feels and plays with toys/objects of different textures
Deliberately turns head/eyes

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Thinking about this Step as a whole, these are the things that I am concerned about and would like to ask questions about:

Developmental journal

for babies and children with down syndrome

Step 4

Developmental Journal for Babies and Children with Down Syndrome

An overview of development during Step 4

Into Step 4 – Communicating more effectively

Children are keener to communicate and they’re on the way to starting to talk. As well as using more recognisable speech sounds, they point, nod and shake their heads. They make more effort to communicate and if they’re not understood straight away, they repeat what they ‘say’ to get their message across. For some children, this is a frustrating time.

You can help by saying what you think your child is trying to express. Using short, simple sentences shows children how thoughts can be put into words.

If you have not tried it before, now might be a good time to start using a sign system, like Makaton or Signalong. Children with Down syndrome are usually good at learning visually, but find it harder to learn from listening alone. Sign can help them to ‘see what you are saying’. Like all children, they understand more than they can say – but it may take longer for words to come. Using signs as you talk helps children to understand what you’re saying and it helps them to communicate with you if they use signs before they can manage words.

Children begin to combine sounds, too – they string sounds together and make short ‘sentences’ of sounds or longer strings of babble that begin to sound more like speech. Your child may start to use particular sounds to mean particular things – for example, when they want a drink. These ‘sounds for things’ are the first steps towards words and should be encouraged. Your child is also likely to start copying sounds and movements that you make and this can be the basis of fun games together. You’ll find they enjoy watching your face and can copy lip movements. Remember that any games using speech sounds help children to hear all the sounds in words and this in turn helps them to learn to talk.

Playing games together

One of the reasons why children want to communicate more is that their thinking and understanding have developed. You can help by introducing toys and activities that bring more variety and new challenges, remembering that young children need things that stretch them a bit, but not too much. Plenty of success and praise encourage children to develop their abilities and to be adventurous in tackling new things. Children at this stage of development often benefit from lots of repetition – what seems boring to us is new learning for them, and repetition helps to consolidate learning. Children learn a surprising amount through observation as well, and so give your child plenty of opportunity to watch you and other people going about your everyday lives. You may also notice that your child’s memory is improving and that they’re recognising people and things for the first time.

Social games and relationships

Children become more sociable. Your child will join in more with games that you play together, like bouncing on your knees to favourite songs or rhymes. Games like these are good, because they help children learn about routines and to anticipate events. This also helps to build security into your relationship. A key part of building a secure relationship is good emotional communication. Your child needs to learn that you can be relied on for comfort, for sympathy and general understanding of their ups and downs. Being sensitive and responsive to your child’s needs and how they express them is important.

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Developmental Journal for Babies and Children with Down Syndrome

An overview of development during Step 4 continued

Paying more attention to people and activities

As well as staying awake for longer periods, children become able to sustain attention on activities for longer. They’re able to concentrate on things and are more observant of the people and events around them. Your child will probably start to look at you to see how you react to things like sudden noises, or the things that they do, like banging a toy on

a table. As well as responding clearly, it’s good to talk about the things that you’re both attending to. This helps your child develop an awareness of other people’s thoughts and feelings, as well as making connections between events, words and consequences.

Because of their new interest in you and what you think, this is an important time to show your child how pleased you are with their new achievements.

Learning through play

Children are learning a lot about the wider world and about the things in it. They’re beginning to understand that objects exist even when they can’t be seen. Before, it was as if ‘out of sight’ was ‘out of mind’, but now children start to find objects that are hidden, so you can play peek-a-boo and hiding games, which are especially interesting to children at this stage of development. You can help by introducing them to pretend games, like ‘feeding teddy’. Even if they can’t do it yet, they’re learning more about things that they’ll soon be able to do for themselves. As they get better at doing things, children get especially interested in the results of their own actions – for example, they may have fun putting one thing on another and then pushing it over. Choosing appropriate toys, and joining in yourself, helps children get the most out of this sort of game.

Moving further

Around about this time, children are likely to get around more efficiently on the floor by crawling and start to pull themselves up to stand. As your child becomes more mobile, making your house ‘child-friendly’ is a priority. You can help by holding them up and supporting them while they practise moving. Your child will also be getting more skilled at picking up objects and doing new things with them. This is a good opportunity to introduce toys with new features offering new possibilities.

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Social-emotional

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Social-emotional continued Developmental Journal · Step 4

Cognition and play

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Cognition and play continued Developmental Journal · Step 4

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Motor and sensory Developmental Journal · Step 4

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Self-help Developmental Journal · Step 4

Thinking about this Step as a whole, these are the things that I am concerned about and would like to ask questions about:

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Summary sheet Developmental Journal · Step 4

Developmental Journal for Babies and Children with Down Syndrome

An overview of development during Step 1 continued

Healthcare

Good hearing and sight are really important for development and it’s important that any difficulty in these areas is picked up early. Most babies now have their hearing checked very soon after birth. Look out for signs that your baby is hearing different sounds, but be aware that babies respond to sound in different ways – some get more active, wave their arms about or widen their eyes, while others quieten down and stop what they’re doing. Sometimes children turn their head towards a sound to one side of them, but sometimes their response is not so obvious – a change in breathing pattern may be the only sign that your baby has heard something. Babies with Down syndrome are at risk for some hearing and vision problems – for more information about this and other health issues, please look at the Early Support Information for parents booklet on Down Syndrome.

Moving on

Babies don’t necessarily master all the things in Step 1 before they start doing things in Step 2. All babies are different and some make progress in one area much more quickly than in others. This applies to all the Steps in this Journal, but if you feel that your child is consistently lagging behind in one area, or if you have concerns about any aspect of their development, there is space for you to note it down so that you can discuss it with someone who works with you on a regular basis (for example, your Health Visitor) the next time you see them.

Please use this Journal to record everything your child does that you’d like to remember and celebrate. There are blank pages and spaces to write things down and add photographs if that’s what you’d like to do. The material is for you to use in whatever way you find most helpful.

Motor and sensory	Achieved (date and child’s age)	Any notes or queries on how your child does this
Sits alone without support and with a straight back
Crawls, bottom shuffles or rolls continuously to move around
Supports whole weight on legs if holding on to support

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Summary sheet continued Developmental Journal · Step 4

Motor and sensory	Achieved (date and child’s age)	Any notes or queries on how your child does this
Starts to pick up things between thumb and fingers (immature pincer grasp)
Watches and follows people, objects and happenings up to 3m away

Thinking about this Step as a whole, these are the things that I am concerned about and would like to ask questions about:

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Developmental journal

for babies and children with down syndrome

Step 5

Developmental Journal for Babies and Children with Down Syndrome

An overview of development during Step 5

Into Step 5 – Talking and communicating

Children now start to use language for all sorts of purposes. They begin to use their own ‘sounds/words’ for things and clearly understand simple things that you say to them. They can point to pictures of objects when you say their names so this is a good time to introduce simple picture books. Your child will also benefit greatly from hearing you and other people talking about what they’re experiencing – that is what they’re seeing, hearing, feeling and doing.

As well as starting to use a few recognizable words, children use gestures and particular sounds to communicate. Although helping and encouraging them to learn to talk is important, it’s communication – getting the message across – that’s the key thing. Use whatever works best for you and your child – words, signs or gestures – and continue to praise their efforts and successes. Continue using listening and speech sound games for words and sounds – they really do help.

Your child will probably also start to be more expressive, using different tones of voice to call you and to ask, tell or refuse. When your child starts to say ‘no’, daily life gets more difficult, but it’s also a positive sign that they’re now ready to take some control of their life. Children at this stage of development can sometimes be ‘difficult’, and get frustrated by things that they want to do but can’t or shouldn’t do. Having interesting toys and activities to use as distractions can help to overcome some of these difficulties.

Visual learners

Picture books are enjoyed by most children at this stage of development, especially when you look at them together. Books can help your child to learn the names for categories of things as well as objects and people, because they can now recognise different groups of things like cars, cats and cushions. Children with Down syndrome usually love to look at books and it’s a great way to teach them, as they remember things that they see and hear more easily than things that they just hear.

Social and emotional progress

Your child’s attachment to you is likely to move forward. You’ll begin to notice that they behave differently towards strangers and may even show anxiety when strangers appear or when you have to leave them for a while. Giving your child comfort and support helps them to cope with these new feelings. It also helps them to learn that you can be relied on to return, even if you’re out of sight for a while.

Understanding more

Children at this stage of development think about more than what’s in front of them. They’re aware when something is missing or when they want something that’s not in sight. Again, this is where communication comes in. Responding to what your child is trying to express – for example, when they want something – shows them how useful it is to communicate.

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Developmental Journal for Babies and Children with Down Syndrome

An overview of development during Step 5 continued

All this means that it’s a good time to play different hiding games. Children get better at picking things up, removing covers and searching for things. You can encourage them to use these new skills by hiding objects in containers and other similar games. ‘Putting in’ and ‘taking out’ games are often very popular, so it helps to have toys that your child can do this with. They also like to stack large rings and to build with bricks.

Children start to enjoy using crayons, felt tips and paint brushes. At first, it will just be scribbling and broad brush strokes, but this lays the basis for learning to draw and write later on. They’ll also begin to enjoy finger painting and playing with pastry or ‘play dough’.

Walking and standing practice

Your child is getting closer to beginning to walk and may be able to stand alone for a short time. They may begin to cruise around the furniture holding on to support

themselves. You can help them exercise the right muscles by supporting them while they practice these skills.

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Social-emotional continued Developmental Journal · Step 5

Cognition and play

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Motor and sensory Developmental Journal · Step 5

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Motor and sensory continued Developmental Journal · Step 5

Self-help

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Self-help continued Developmental Journal · Step 5