Communication and play

Communication is key to sharing thoughts and feelings, making sure that our voice is heard and our needs are met. Communication is not just speech. We express ourselves in a variety of ways, including through gestures, the written word, noises, facial expressions and emotional expressions, such as laughter and tears.

A person with Tay-Sachs or Sandhoff disease will gradually lose the ability to communicate as effectively as they once did. This can impact the psychological wellbeing of the individual and their family.

The onset of neurological symptoms in your child or loved one may affect the development of play skills. They may need many more opportunities to imitate and learn how to play, and if communication difficulties are also present, appropriate aids can assist them in inclusive play.

It is important that your child or loved one plays and enjoys their life to the full, whatever their physical limitations are. As Tay-Sachs and Sandhoff diseases progress, you may find that you need to adapt the ways in which you communicate and play with your child or loved one. Being patient and open-minded with play, learning new techniques, and being imaginative can all be helpful strategies.

You may wish to speak with an allied health professional, such as a Speech Pathologist or Occupational Therapist for advice on supporting communication and play.

Babies and young children

Babies respond beautifully to expressions and voices. Although your child or loved one will gradually lose their own ability to express themselves in these ways, they will certainly find comfort in the familiarity of your voice, tones and expressions.

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  • Talk to your child or loved one while you are preparing bottles, medicines or feeds. This will make sure they know you are nearby and they feel safe.
  • Sing songs at certain times of the day, as part of a routine. This will increase comfort and reassurance and is a great way of communicating.
  • Continue to read your child or loved one’s favourite or familiar books. This can provide great comfort.
  • Where possible, try to avoid loud, sudden noises. Your child or loved one’s startle reflex may have returned, and these types of noises can cause discomfort.

Trust that you will be able to understand the needs of your child or loved one, even as they lose their ability to communicate as they once did. It is likely that, as their behavioural cues, such as being tired, wanting stimulation, experiencing discomfort and so on change, you will also adapt. Your care and support team may also be able to support you in this journey.

Sensory experiences

A young child can benefit from aids that offer visual stimulation and are calm and soothing. They may not be able to handle and play with ordinary toys, but there is a huge range of appropriate sensory toys that will bring a combination of interest and comfort for your child or loved one.

Just like anyone else, your child or loved one will have their own sensory preferences. Observe how they respond to an experience and this can guide you towards further experiences that they enjoy.

Depending on the stage your child or loved one is at, both related to age and regression, there are a combination of great sensory experiences that can be bought, gifted or made.

Keep in mind that during the course of your child or loved one’s regression, their sensory experience will change. They may lose their long-distance vision or experience a loss of hearing, or have increased sensitivity to soft touch.

Introducing familiarity to some of these toys as early on as possible may provide comfort in later stages of the disease.

Contact Rare Find Foundation for access to some simple toys that have been well-received by other babies and younger children.

Some ideas for sensory experiences are included below. Ensure that your child or loved one is supervised by an adult experienced with their abilities and limitations, to ensure that they experience these ideas for play safely.

Marc and Anna playing with Sebby

Smells

  • Over time, your child or loved one may become increasingly reliant on smells to interpret their surroundings. Similar to newborn babies, these children will feel great familiarity and comfort when they are able to pick up the natural scents of their loved ones. Perfumes and other artificial smells can block out these familiar scents.
  • Smells that are strong or unpleasant to your child or loved one may be overwhelming for them.
  • Pick some gum leaves for them to smell, ensuring your child or loved one does not eat them.
  • Use aromatherapy oils at various stages of your routine, such as at bath time. These can be used safely in a vapouriser.

Touch

  • Rare Find Foundation can provide you with toys with a range of textures.
  • Roll up cellophane and use sticky tape to make a great crinkly toy with different textures and sounds.
  • Safely play with a garment like a satin scarf.
  • Try massage and relaxation. This can help to reduce anxiety and stress, as well as relieve pain naturally by encouraging the production of endorphins, which are naturally occurring chemicals generated by the body to fight pain. It is a good idea to seek out appropriately qualified therapists to ensure that services are safe and therapeutic. Allied health professionals, such as Physiotherapists and Occupational Therapists can also assist.

Sounds

  • Sound is another sense that your child or loved one may become increasingly reliant on over time. Your voice, and the voice of any other parents or carers, are important sources of comfort and security.
  • Ask a grandparent or close relative to record themselves reading stories. Your child or loved one will love hearing their voice.
  • Play gentle music, or other types of music that your child or loved one responds positively towards.

Sights

  • You can also visit Sensory App House for a number of accessible apps for therapy and education, available for iPad, Chromebook, Windows, Mac and Android. https://www.sensoryapphouse.com/

Immersive experiences

  • Walk through a park or near the beach to allow your child or loved one to experience multiple lovely senses at once, like the breeze, warmth of the sun and the sounds of birds.
  • Spend time outdoors, whether in your own garden if you have one, or in another enjoyable setting. This can support you all to relax together in a different environment.
  • Engage your child or loved one with art, whether through participation, such as finger painting, or exposure, such as visiting an art gallery or installation.
Poppy seated in a giant pink chair outdoors amoung flowers

Juveniles and adults

In individuals experiencing a later onset variant of Tay-Sachs or Sandhoff disease, slurred speech may be the first observable sign of deteriorating communication ability. While those closest to the person may still be able to understand them, others may not.

Behaviour can be an issue in children, juveniles and adults with Tay-Sachs or Sandhoff disease. Sometimes this can be caused by feelings of frustration as a result of losing skills or an inability to do what they want to do.

It may take longer for you to communicate with your child or loved one. Accepting this change in pace and allowing extra time to communicate can help avoid feelings of frustration.

There are many ways in which carers of someone with Tay-Sachs or Sandhoff disease can support their communication. These include:

  • being considerate
  • being polite
  • not talking about them as if they are not there
  • speaking slowly
  • being patient
  • trying not to finish sentences
  • using closed questions that only need a yes or no answer

You may find it useful to speak with an allied health professional, such as a Speech Pathologist, for support in communicating with your child or loved one, including the use of assistive devices.