Carlyn has Usher syndrome type 1. She was born deaf and without an organ of balance.
Now she is a teenager and she is cycling an MTB trail through the forest.
Ushermom is the mother of Jackson. Jackson suffers from USH 1b and was born deaf and without an organ of balance.
Ushermom wrote a blog about her son’s ‘balance issue’.
For the deaf child there are even more specific consequences for the communication.
- Instability of the eyes while moving the head and the body makes it difficult to process information from several sources.
- It is hard for the child to retain the visual attention for rapidly successive gestures or lip movements.
- The poor perception of the vertical axis and the orientation of the body make it difficult for the child to understand the concept of right, left, front and rear while others communicate with it in gestures. Someone standing opposite the child makes mirrorwise gestures compared to its own gestures.
In order to keep its balance, a child that gets no vestibular information must strengthen the other two sensory inputs.
As a parent you can help your child in various ways.
Children suffering from Usher Syndrome type 1 go through the phases of psychomotor development, but they will do this much slower because they do not have all sensory information.
Because of the absence of vestibular information of an organ of balance, a child:
- needs more time to hold his head steady. It has problems stretching the body when lying on the stomach. This makes sitting up to be followed by standing up really difficult.
- slowly moves forward because of insecurity and often falls. Falling often occurs, because the child does not notice the fast rotations of the body quickly enough and does not have time to stretch its arms forward to protect itself. The first steps are important because these require control of the imbalance for a very short time. In order to compensate for its insecurity and difficulties, the child will require the support of a hand, which hinders its autonomy and its desire to explore its surroundings.
- feels unpleasant when making fast movements. The smaller the child, the less it can anticipate these movements (swinging, rotations, turnarounds). It does not know yet how it should use its eyes and support to compensate. To fight the dizziness, many children ‘block’ their heads as a result of which they stiffen.
- In daily life, and even more when in a group, the surroundings generally are moving. The child has trouble receiving stationary visual signals to stabilise itself and getting all information it needs. For instance, to follow a friend in a group of other children, to localise the ball or to avoid obstacles. When there is too much information, it may be difficult for a child to follow an instruction. It may then seem to be ‘absent-minded’ or on the contrary become very restless because of the many stimulants. Overwhelmed by the situation, the child can express its powerlessness by being restless.
- It is hard to retain the attention when the body is unstable.
- wants to avoid complex situations. The playground equipment in a public playground may initially frighten the child, because it does not feel safe yet to enter into complex situations, such as climbing a net, sliding down the slide or swaying on a rope. There is a risk of falling, getting dizzy and becoming disoriented. Also think of the sports activities at school during which an older child seems to be a bit clumsier than its classmates.
- soon gets tired. Without vestibular information the child needs a lot of energy to control the instability of its head and body. This makes it very tired and not alert to learning tasks. It is difficult for the child to simultaneously stabilise its body, search for physical and visual support and carry out activities, such as drawing, reading or writing. It continuously has to carry out various tasks at the same time.
- has less sense of space. Without an identification mark (vertical lines or planes) in the room it is more difficult for the child to localise the various parts of its body. What is the top, the bottom, the front side, the rear side? Determining your position in a space is complex and also has an effect on skills like drawing, building, doing jigsaws and writing.
A child will also try to find solutions itself. A child:
- will search for information about its position. In the first place, the child will try to strengthen its support (back, hands, feet). When it starts to move, the support provided by the ground is important. The child can better feel the various types of floors (carpet, tiles, parquet, grass) when standing on bare feet. Things will be more difficult on sand or uneven terrain (pebbles, slope). It does not have the means yet to control the situation and feels insecure.
- will use its eyes to stabilise its body. If possible, the child will use its eyes to stabilise its head and body. Talking and walking or standing is a double task and often hard to do. This lack of attention decreases the ability to react to the people around it or to understand an instruction. In a new, unknown situation/room the child will have to do without the visual signals that it makes use of at home to help it making its movements.
The child does not have any visual indications in the dark. It can only trust on its touch and the feeling from its soles to stabilise itself.
To help your child in its motor development and to build up self-confidence, it is important that it is given intensive vestibular therapy. As soon as the child has learned how to walk and ride a bike, it is important to keep practising and training these skills and to stimulate the child to pick up new challenges. Frequently dancing and sporting train the muscle spindles in the muscles and tendons.