Congenital Deafblindness

Learning

What a congenitally deafblind person learns, how much they learn, when they learn it can be enhanced by:-

  • Stable health
  • Parents & carers having their needs adequately supported
  • Acceptance of the child’s uniqueness and a belief that despite the challenges, learning is possible
  • Understanding and making the most of whatever hearing and vision the child does have
  • Assisting learning using  the child’s other senses, touch, taste, smell and body awareness
  • Using their muscles and having opportunity to experience different body positions and movement throughout their day
  • Acceptance of  being in close physical contact with others
  • Getting lots of chances for repetition and practice
  • Having a day that contains some of the same routines and predictable experiences
  • Recognising what kind of communication the child currently uses
  • Working on establishing a shared form of communication
  • Bonding with someone who recognises and can provide opportunities for learning

Stable Health

Depending on your child’s diagnosis or cause of deafblindness, there may be a time of focussing on achieving stable health. This could be a range of things…stabilising the heart and breathing, getting adequate nutrition, establishing sleep patterns or controlling seizures. This is an important phase of your child’s growing. Don’t underestimate it as an achievement. It’s a necessary basis for learning to come.

Parents & carers having their needs adequately supported

Not long after venturing into the parenting or caring role, you will realise that it demands a lot of you. In the midst of this, your needs and wants may be pushed to the background, foregone as you do your utmost to fulfil your responsibilities to your new child and other family members. Caring for a child with the additional needs of deafblindness, means a higher risk of your needs being a low priority. It is difficult to shift this balance, but not impossible. Here are some tips from other parents:-

  • Don’t feel guilty about looking after yourself, don’t ignore what you need, take some time for you
  • If you feel there isn’t enough time in the day to do everything that’s needed, let go and delegate, ask someone else to do something on your “To do list”
  • Accept offers of help. They wouldn’t offer if they couldn’t help.
  • Acknowledge any negative feelings you have, they are not unnatural, they are human. Counselling can help if these feelings overwhelm you.

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