Toys, Play & Activities for Babies and Young Children who have Spinal Muscular Atrophy

Practical tips and suggestions for parents and carers, including ideas shared by parents of children who have
SMA.
 

If you would like a hard copy of the following information as a colour booklet, please email: supportservices@smasupportuk.org.uk

Babies and children who have SMA are generally bright, alert and eager to engage with people. They want to play but their reduced muscle strength and movement can make this challenging for them. We hope that the suggestions here will give you some ideas that you can use and enjoy with your child.

SMA Support UK provides free multisensory toy packs for babies newly diagnosed with early onset SMA Type 1 or rarer forms of SMA. For more information, please click here.

Keeping Play Safe

Look out for small, lightweight toys or ones that need minimal pressure to get them to work. You can also provide your child with a fun sensory experience with household objects such as wooden spoons, pots, containers and cardboard boxes – just check and throw away any with sharp edges, splinters or staples.

You might find that some toys designed for older children are suitable for your child because they’re light, but please satisfy yourself of the safety and suitability of any toy you give your child. There are some links to more information about safety at the end of the booklet.

Please always:

  • read any instructions that come with the toy or activity
  • make sure it’s safe and suitable for your child
  • supervise your child when they’re playing
  • check toys regularly to make sure they aren’t broken or unusable

Keeping comfortable

It’s important that babies and children who are unable to sit, avoid lying on their tummies as this can make it more difficult for them to breathe and to lift their head up.

As they get older, if your child needs to continue to lie flat so that they can breathe more easily, your physiotherapist (physio) or occupational therapist (OT) can advise you whether a beanbag or other supportive seating is suitable for them.

They’ll also be able to suggest buggies which are more comfortable for your child for when you’re out and about. Some buggies have large, strong trays underneath which are good for carrying equipment.

If your child can sit comfortably and safely, supportive seating and other equipment may help them play and join in with activities.

If your child is using specialist seating or a wheelchair, you may want to use a table with a rim to stop toys sliding off or a non-slip mat to help keep toys in place.

A height-adjustable table, or a table on blocks can be useful. Your OT or physio will be able to help you with best positioning and different options.

Your physio or OT will also have ideas about how you can use play as a way to help your child exercise, stretch and move their muscles as much as possible. They may also be able to suggest suitable toys and play opportunities such as playgroups, parks or toy libraries in your area.

Noise and Colours

Before babies learn how to grasp objects, they respond to things they can look at and listen to. Bright colours or high contrast colours like black and white are easiest to see. Babies particularly like objects that make a noise when moved.

 

Some ideas

  • Brightly coloured musical mobiles and baby play gyms
  • Unbreakable mirrors
  • Helium balloons which can be attached to your baby’s wrist
  • Musical television which attaches to the cot                                   
  • Wind chimes, coloured ribbons, balloons and windsocks in the garden
  • Tinsel and fairy lights (securely out of reach)
  • Sensory toys, fibre optic lights, lava lamps, disco balls, bubble tubes
  • Space blanket - these are often shiny and make a sound when scrunched up; they can also be used for playing ‘peek-a-boo’
  • Blowing bubbles                    
  • Music – DVDs and nursery rhymes
  • Talking and singing with your baby
  • Lullaby projector lightshows
  • Bath time fun with music and toys that make a noise or light up

Exploring Using Mouth and Hands

As babies get older, they learn to explore using their mouth and by grasping at their toys. You may be able to reduce the effort your baby needs to use their arms and hands by supporting them in a sitting or lying position. Lying your baby on their side with support may help them to use both their hands together.

As your baby grows, your OT and physio may need to review and alter their seating and positioning.

Some ideas:

  • Activity centre, play mat or vibrating mat for when your baby is lying down
  • Lightweight rattles and bells – some can be attached to your child’s wrist
  • Squeaky rubber toys
  • Colourful teething rings
  • Bangles and pegs which are brightly coloured and light to hold
  • Reading to your child using colourful boards or fabric books with textured pages
  • Action songs, for example, ‘Round and Round the Garden’ (see below) and ‘This Little Piggy’
  • Finger puppets that are lightweight and colourful
  • Small soft toys which can be held easily

Holding Objects

Over time, your child may start to pull objects towards them and pass them from one hand to the other. They may also begin to pick up small objects between their forefinger and thumb (using a ‘pincer’ grasp).

They might enjoy having their toys in front of them on a tray with a rim so that they don’t easily slide off.

You can also use non-slip mats to help keep toys in place.

Some ideas:

  • Building blocks made of cloth or lightweight plastic e.g. Duplo. These are light and encourage reaching and stretching. You can also get magnetic blocks which make building easier
  • Books with different textures to touch and feel
  • Soft toys with bells inside
  • Lightweight shape sorters
  • Stacking cups or rings


Movement and Interaction

Your child may enjoy movement and interactive games such as tickling and peek-a-boo. As they get older they may begin to imitate what they see around them, start to recognise words and the names of familiar objects.

 

Some ideas:

  • Gentle baby massage
  • Gentle swinging in a hammock
  • Movement to music and acting out nursery rhymes
  • Toys that move. These may be battery or switch operated toys which can be adapted so that they can be worked by a large button or flat pad which requires minimal pressure
  • Toy telephones with buttons that need little pressure to work        
  • An arm sling attached to a baby gym can support your child’s arm when they’re playing. Ask your physio for advice – you might be able to make your own
  • Look in your local library for storytelling or rhyme sessions
  • Lightweight plastic musical instruments which need minimal pressure to work
  • Finger and hand games such as ‘Incy Wincy Spider’ and ‘The Wheels on the Bus’
  • A sand box to feel the texture with their hands and feet
  • Perhaps introduce a computer or tablet and games that encourage play and learning. You might need to position the computer in more creative ways, for example lying it on its side, so that your child can use it comfortably 

 

More ideas:

  • Going to a local music group, sometimes held at your local library
  • Visiting a local wildlife centre, zoo or aquarium to see the animals   
  • Going to the park and feeding the ducks
  • Take a bucket and collect leaves, pinecones and other interesting items for your child to see and feel
  • A trip to the seaside and making sandcastles - look for small lightweight buckets and spades or plastic sandcastle moulds
  • Swimming or, if you have one, hydrotherapy pool activities. The buoyancy and warmth of the water makes it easier to move. There are various floatation aids available if you need them. Ask your child’s medical team about your local facilities and what might be suitable for your child


Cause and Effect

As your child becomes interested in what happens when they do something, you can introduce new toys and ideas to provide fun and learning.

Some ideas:

  • Magnetic books, jigsaws or games
  • Building towers with blocks, cubes, or plastic cups
  • Playmobil and Duplo figures are lightweight and washable
  • Messy play using sand, water or jelly. Your child may be able to sit in a wooden sand pit, or try a corner seat. Some standing frames have a bowl within the tray for messy play
  • Games of hide and seek like hiding under the towel at bath time
  • Toys controlled using a joystick can be fun and develop skills that will be useful later on if your child uses a powered wheelchair
  • Drawing or painting. It can help to stick paper down with blue tack to hold it still. Try light-touch thicker pencils, felt tip pens or Crayola Twistables which glide on easily. Pencil grips can also help make the pencil easier to hold. Finger painting or printing using shapes is also fun
  • Stickers to make cards and pictures
  • Magnetic boards with iron filings for drawing. These are easy to use and wipeable too
  • Helping with baking, mixing and decorating cakes and biscuits

    

More ideas:

  • If you have a garden, children enjoy the motion of a swing. You’ll need a seat that gives back, side and head support and has a harness – check with your OT or physio
  • Tablet and other touch-screen devices offer various apps for play and learning. You can use a stand to hold or support the device
  • Miniature skittles using a sponge ball
  • Throwing and catching games using light sponge balls or balloons
  • Helping in the garden: planting seeds; smelling flowers; growing vegetables; or caring for small pets like rabbits and guinea pigs
  • Having a picnic. Use plastic lightweight crockery and plastic foods to encourage imaginative play
  • Watching a puppet show or children’s play
  • Visiting a fairground to enjoy the sights, sounds and smells
  • In some areas of the country there are inclusive cycling projects which have adapted cycles so that children with disabilities can join in with their families. Search websites of local parks for more information

Hands On

You might have to help your child a lot to enable them to move and explore for themselves. It can take some creativity, and some trial and improvisation, but working with your child’s abilities can help avoid them feeling frustrated or upset if they find an activity difficult to manage by themselves.

 

Some ideas:

  • Playdough. Rolling, squeezing and cutting out shapes. Fresh homemade playdough is softer and easier to manage (see below)
  • Dressing up using hats, wigs, costumes and face paints
  • Fuzzy-Felt activities
  • Trains and cars on tracks or slides. Magnetic trains are easier to join together
  • Magnetic mosaic pictures and magnetic fishing games
  • Large knob wooden jigsaws and puzzles
  • Toys that use the pull of gravity like cars or marbles sent down ramps. This encourages reaching and stretching

Becoming more independent

Your child’s physio or OT will tell you about powered wheelchairs if your child needs one to explore, take part in activities and play with their friends more independently.

If your OT recommends it, Wizzybug is a powered wheelchair for children under the age of 5. It can be used both indoors and outside and is easy to work so can be suitable for children as young as 18 months old. Wizzybugs can be loaned or purchased from Designability: www.designability.org.uk    

As your child gets older they may need different wheelchairs. Your OT or physio will be able to advise you.

Computers and Assistive Technology

If your child wants to use a computer for playing games and for school work, they may need some adaptations so that they can use a computer independently, for example a light touch mouse.

For more information on computer adaptations you can contact the following organisations:

AbilityNet – offer advice and training on computer technology for disabled people: www.abilitynet.org.uk

Everyone Can – help disabled people speak, live independently, control their environment and have fun, through training and assistive technology: www.everyonecan.org.uk

Inclusive Technology – online retailer specialising in computer access equipment: www.inclusive.co.uk

Special Effect -  enable you to find out about and try adapted gaming controls. For more information, please see: www.specialeffect.org.uk

Smartbox Assistve Technology -  combine computer technology with communication software: www.thinksmartbox.com

Where to get toys and help with play ideas

  • Borrowing Toys

Toy libraries run loan schemes where you can borrow toys at a very low cost. It’s a good way of giving your child variety so that they don’t get bored. It’s also a good way of testing which toys your child enjoys most before you buy anything. Your local authority website or your local library should give you details of your nearest toy library. Your health visitor may also be able to tell you if there’s a Snoezelen Centre (multi-sensory environment) in your area.

In Scotland, Smart Play Network supports toy libraries, play services and play providers: www.smartplaynetwork.org

Newlife – a charity for Disabled Children – loan toys through their play therapy pod service. Phone: 0800 902 0095 - www.newlifecharity.co.uk
 

  • Centres and Schemes

Children’s Centres provide activities and play ideas for children under the age of 5. To see if you have a local centre please see: www.gov.uk/find-sure-start-childrens-centre

The Portage Scheme is a national home-visiting educational service for pre-school children with additional support needs and their families: www.portage.org.uk

Children’s hospices offer play facilities for children with life-limiting conditions and their siblings, including multi-sensory rooms and music rooms. Some hospices employ play workers who work both in the hospice and in the community, visiting families at home to offer support and advice. To find your local hospice, visit: https://www2.togetherforshortlives.org.uk/portal/public/volunteer/
 

  • Buying Toys

Specialist suppliers include:

Disabled Living Foundation – equipment information and a supplier directory which includes children’s play equipment:
www.dlf.org.uk/content/services-parents  

Dycem – supply non-slip mats:
www.dycem-ns.com

Explore your Senses – sensory toys:
www.exploreyoursenses.co.uk

Hope Education – educational resources:
www.hope-education.co.uk

Liberator – switch adapted toys:
www.liberator.co.uk

Rompa – sensory and developmental toys:
www.rompa.com

Sense Toys – sensory toys:
www.sensetoys.com

Sensory Toy Warehouse:
www.sensorytoywarehouse.com

Spacekraft – sensory resources:
www.spacekraft.co.uk

Special Needs Toys – range of toys:
www.specialneedstoys.com
 

  • Funding for Toys

You can apply to the Family Fund for financial assistance towards the cost of toys: www.familyfund.org.uk  

SMA Support UK may have information on other potential sources of funding. Our contact details are at the end of this booklet.
 

  • Safe Play

The charity Sense has a play toolkit for parents that includes tips and suggestions.

For toy safety in general, click here to read more.
 

  • Wish Granting Charities

Wish granting charities may be able to arrange a memorable wish or experience; for suggestions see: www.smasupportuk.org.uk/wish-granting-charities
 

SMA Support UK Children’s Books

The following books are available via our website:
www.smasupportuk.org.uk/childrens-books

Smasheroo – an illustrated book for young children affected by SMA Type 2 or SMA Type 3

SMA Type 2 and Me – written for children aged 8 to 12 years to help explain SMA

SMA Type 3 and Me – written for children aged 8 years and over to help explain SMA

Acknowledgements and Disclaimer

This leaflet has used the knowledge and experience of parents and grandparents of children with SMA and Spinal Muscular Atrophy Support UK staff who have spent time with families.

The websites and organisations referred to in this booklet are external to SMA Support UK. They are generally included because families have recommended them. SMA Support UK is unable to endorse any of the specific products or organisations listed. We are also not responsible for the content of websites referred to that are external to SMA Support UK

We are grateful to the writers and reviewers who assist us in our information production. A list of who this includes may be viewed on our website: www.smasupportuk.org.uk/our-writers-and-reviewers-panel or requested from supportservices@smasupportuk.org.uk

Whilst every effort is made to ensure that the information in this document is complete, correct and up to date, this cannot be guaranteed and SMA Support UK shall not be liable whatsoever for any damages incurred as a result of its use. SMA Support UK does not necessarily endorse the services provided by the organisations listed in our information sheets.

If you have any feedback about this information, please do let us know at: supportservices@smasupportuk.org.uk

Version 2
Author: SMA Support UK Information Production Team
Published: August 2018
Full review due: July 2021