Toys, Play and Activities

for Babies with Spinal Muscular Atrophy

This booklet aims to give parents and carers of babies with Spinal Muscular Atrophy (SMA) practical tips and ideas for toys, play and activities. It uses 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. It includes personal stories from families who have shared their experiences of toys, play and activities that their baby enjoyed. 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.

As a parent / carer please ensure that: -

A toy / activity is safe and suitable for your child You read any instructions that come with the toy / activity You supervise your child whilst they are playing / doing an activity

SMA Support UK Multi-Sensory Toy Packs SMA Support UK provide free multi-sensory toy packs for babies newly diagnosed with Spinal Muscular Atrophy Type 1 or Spinal Muscular Atrophy with Respiratory Distress (SMARD). For more information please contact the Support Services Team - details are on the back of this booklet.

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Getting Ready for Play and Activities Babies with 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. Supportive seating or positioning may help and your occupational therapist or physiotherapist will be able to tell you about equipment that is suitable for your baby. Avoid placing your baby on their tummy as this can make it more difficult for babies with SMA to breathe and to lift their head up. If you are considering using a beanbag for your baby to lie on, you can get further advice on this from your physiotherapist.

If getting out and about is difficult because of your baby’s positioning or equipment needs, talk to your occupational therapist, physiotherapist or outreach worker. They will be able to suggest buggies which could make your baby more comfortable. Some buggies also have large, strong trays underneath which are suitable for carrying equipment.

You can discuss the suggestions in this booklet with your physiotherapist who will also have ideas about how you can use play as a way to help your baby to exercise and to stretch and move their muscles as much as possible. Your occupational therapist can tell you about suitable toys and play opportunities in your area.

Toy, Play and Activity Suggestions Look out for small, lightweight toys or ones that need minimal pressure to get them to work. You can also provide your baby with a fun sensory experience with household objects such as wooden spoons, pots and containers and cardboard boxes. You might find that some toys designed for older children are suitable for your baby because they are light, but please satisfy yourself of the safety and suitability of any toy you give to your baby. For more information on toy safety please visit the RoSPA website: http://www.rospa.com/home-safety/advice/product/toy-safety/

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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 they move.

“Bubbles are great. We blow them over our daughter when she is lying on the floor and she tries to catch them” Mum of 3 month old baby with SMA Type 1

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, balloons and windsocks in the garden Coloured ribbon, tinsel and fairy lights Sensory toys, fibre optic lights, lava lamps, disco balls, bubble tubes Space blanket - these are often shiny and make a crunchy sound when scrunched up; they can also be used for playing peek-a-boo  Blowing bubbles

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Music – DVDs and nursery rhymes Talking and singing with your baby Lullaby projector lightshows Bath time fun with music and toys that squeak or light up

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Suggestions from Amar’s Family

“There were many occasions, in fact nearly all our time with Amar, when we played with him to keep him and ourselves as happy as we could. We used the everyday activities of his bath time, his exercises, physiotherapy etc., as a fun time. We both used to exercise his legs and arms by making stretching movements. We used to sing nursery rhymes and used sports commentary whilst exercising him.”

“We bought many helium filled foil balloons for Amar. We tied them to his wrist and he used to look at the balloon and found it fascinating when he discovered that his slight movement could move it. We felt this was a stimulant for him. We tied different coloured balloons to a tree in our garden. Whenever we were in the kitchen, we used to face Amar in that direction. As the wind blew, the balloons moved and he used to find it fascinating.”

“We found that small, lightweight toys were better for him to play with. We also used coloured ribbons, tinsel, and fairy lights to maintain his stimulation.”

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Exploring Using Mouth and Hands

“We play catch indoors with a balloon as this is much lighter than a ball” Dad of 5 month old baby with SMA Type 1

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.

Your occupational therapist or physiotherapist will be able to advise you on positioning. They will also be able to assess your baby for specialist seating. This often comes with a tray which can support your baby’s arms and hold their toys. As your baby grows, your occupational therapist and physiotherapist 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 Squeaky rubber toys Colourful teething rings Bangles and pegs which are brightly coloured and light to hold Reading to your baby using colourful board or fabric books with textured pages Action songs, for example, ‘Round and Round the Garden’ and ‘This Little Piggy’ Finger puppets that are lightweight and colourful Small soft toys which can be held easily

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Suggestions from Jessica’s Family

“Jessica liked to watch everything around her with great interest and up to the time of diagnosis, play activities would focus around interaction with toys that were manipulated by us and others.”

“When she started seeing a physiotherapist we were loaned equipment to help her sit, and for us to carry out physiotherapy type exercises, which Jessica seemed to think was play and enjoyed greatly.”

“During her time in hospital, we used to play her music videos (mainly “Dance with the Teletubbies”) and roll her around to the music in her hospital bed. I also used to dance around and sing along, which amused her. She would be lying on her back and I would take her left arm and left leg, and roll her around the bed.”

“We bought Jessica a large green vanilla scented plastic ball which she would roll up and down on her chest. We also bought her a helium balloon, which she loved pulling around by the string.”

“She had a special mobile in hospital that had glass mirrors, bells and a ball to pull, which she enjoyed. She had a doll’s comb and mirror that she liked to hold and play with.”

“She also liked the baby’s play gym, peek-a-boo games, crinkly lightweight toys and people blowing bubbles for her, as she would pop the bubbles with her hand.”

“Friends used to make her laugh by playing with the musical toys and dancing for her.”

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Holding Objects Over time, your baby will start to pull objects towards themselves and pass them from one hand to the other. They will also begin to pick up small objects between their forefinger and thumb (a pincer grasp).

Your baby 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.

“Our son enjoys playing with small blocks and animals on a tray” Dad of 8 month old baby with SMA Type 1

Some ideas:

 Building blocks made of cloth or Duplo. These are light and encourage reaching and stretching. You can get magnetic blocks which make building easier

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Books with different textures to touch and feel

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Soft toys with bells inside

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Lightweight shape sorters

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Stacking cups or rings

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Suggestions from Joanna’s Family

“Joanna had some pull-along ducks that go ‘quack-quack’ when you pull the string. She was strong enough to do this as the toy was very sensitive. She got a great deal of enjoyment from watching and hearing the ducks when she pulled the string.”

“Joanna loved to play with helium balloons, pulling them down by the string.”

“She also enjoyed her ‘Octopull’ toy, because she could feel the different textures and make it rattle if she hit it hard enough. She loved to explore with her hands and feel different textures and she also had a habit of holding her ear.”

“We bought some bells which were on a strap and designed to go on a baby’s wrist.”

“Joanna also had a mobile, which hung from our living room ceiling, and a wedge, which she lay on.”

“She also enjoyed small cuddly toys. She would watch her Winnie-the-Pooh video for hours; it was very bright and fast moving.”

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Movement and Interaction

“Our daughter loves to move shapes along a string. It encourages her to stretch and makes her laugh” Mum of 12 month old baby with SMA Type 1

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

Some ideas:

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Swimming or hydrotherapy pool activities. The buoyancy and warmth of the water will make it easier for your baby to move. Ask your physiotherapist if there is a hydrotherapy pool local to you. There are various floatation aids available if you need them

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Gentle baby massage

 A hammock with a blanket so that you can gently swing your baby

 Movement to music and acting out nursery rhymes

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Toys that move. These may be battery or switch operated toys. Switch operated toys can be adapted so that they can be worked by a large button or flat pad which requires minimal pressure

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Toy telephones with buttons that need little pressure to activate

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An arm sling attached to a baby gym can be used to support your baby’s arm when they are playing. For more information on arm slings, speak to your physiotherapist

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Going to a local music group

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Visiting a local wildlife centre, zoo or aquarium to see the animals

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Visiting the park and feeding the ducks. Take a bucket and collect leaves, pinecones and other interesting items for your baby to see and feel

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Going to the seaside and making sandcastles. Look for miniature, lightweight buckets and spades or plastic sandcastle moulds

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Look in your local library for story telling or rhyme sessions

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Lightweight plastic musical instruments which require minimal pressure to activate

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Finger and hand games such as ‘Incy Wincy Spider’ and ‘The Wheels on the Bus’

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Playing with pets

Perhaps introduce a computer and games that encourage play and learning. You might need to position the computer in more creative ways, for example lying on its side

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Suggestions from Aaron’s Family “My son Aaron, was affected by SMA Type 1. He lived for twelve months and, despite the sadness, there was also much joy and happiness surrounding us. Below are a few hints and ideas as to how we gave Aaron as fulfilling a life as possible.” “When Aaron was crying or distressed and didn’t appear to be tired or ill, we often found that massage would comfort him.” “With regard to toys and play, I would recommend joining a local toy library. They have many toys and ideas suitable for babies with SMA. Toys need to be easy to operate with a light touch or alternatively wind-up or battery / mains operated.”

“Living out of town we were fortunate to have quite a few pets that Aaron loved. If you have no pets, perhaps you can take your child to the zoo or maybe your neighbours or friends have some pets for your baby to interact with.” “Aaron also loved plenty of people (especially children) round him. However we stressed the importance of not having anyone visit if they were unwell, especially with a cold.” “Water was also good for him. It was here that he had the ability to kick around a little; he felt good doing that.” “I believe that Aaron benefited most from the company of family and friends. Being so alert, he needed plenty of communication. Try singing games such as ‘This Little Piggy’ and ‘Round and Round the Garden’.” “Provide the opportunity to touch, smell and taste and all the approval and recognition whenever something is achieved, no matter how small it may be.”

“I recently visited a boy Andy, who has SMA Type 1; his parents had built a frame above his chair with arm slings which, by lifting Andy’s arms up and out, gave him the ability to play with the toys and paint brushes in his hands and paint on the tray in front of him.”

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Where to get Toys and Help with Play Ideas Toy Libraries

Toy libraries operate loan schemes which enable parents to borrow toys at a very low cost and then swap the selection of toys to prevent their baby becoming bored. It is also a good way to test out what toys your baby enjoys the most. Details of your nearest toy library should be available from your local authority website or your local library. Your health visitor may also be able to advise you on whether there is a Snoezelen Centre (multi-sensory environment) in your area.

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

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

Portage Schemes Portage is a home-visiting educational service for pre-school children with additional support needs and their families. You can find information about portage services and details of local schemes on the National Portage Association's website: www.portage.org.uk

Hospice Services 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 the website of Together for Short Lives: www.togetherforshortlives.org.uk

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Buying Toys Places where you can purchase toys that might be suitable for your baby include: Disabled Living Foundation – have a supplier’s directory which includes children’s play equipment: www.dlfdirectory.org.uk 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 Sensabout – multi-sensory resource packs: www.sensabout.com Sense Toys – sensory toys: www.sensetoys.com Sensory Plus – sensory equipment: www.sensoryplus.co.uk Sensory Toy Warehouse: www.sensorytoywarehouse.com Spacekraft – sensory resources: www.spacekraft.co.uk Special Needs Toys – toys for children with disabilities and special needs: www.specialneedstoys.com

Funding for Toys You can apply to the Family Fund for financial assistance towards the cost of toys. Please see www.familyfund.org.uk You can also contact SMA Support UK for information on other potential sources of funding. Our contact details are at the end of this booklet.

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Spinal Muscular Atrophy Support UK 40 Cygnet Court Timothy’s Bridge Road Stratford-upon-Avon CV37 9NW Telephone: 01789 267 520 Ask for Support Services – we can call you back. E-mail: [email protected] Website: www.smasupportuk.org.uk

Hard copies of the following leaflets can be requested from SMA Support UK or downloaded from the website:  Wish Granting Charities  Spinal Muscular Atrophy – Information for Families

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 [email protected] 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.

Version 2.1 / SMA Support UK Information Production Team / Published: April 2015 / Reviewed: April 2016 / Full review due: April 2018 Registered Charity No. 1106815. Company Limited by Guarantee No. 5137534. Registered in England and Wales.