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Parents' corner

Parents' corner

As parents, you always put the well-being of your children first. When you are taking care of a child with a spinal injury or a condition like spina bifida, you are ready to do what is necessary to make their life easier and prepare them to live their life as independently as possible.

It is quite natural to be overwhelmed, unprepared and confused in the beginning. It is inevitable that you will ask yourself what had caused this situation, how long it will last and how the child will develop?

Without proper and complete information, there is a higher chance that fear will affect the quality of your life and the life of your family. That is why we have prepared the most important information you need now in one place.

The importance of feeling safe

What the spinal cord injury and spina bifida have in common is the fact that they have a significant impact on the patient’s life. The first thing you need to actively work on is to prepare and empower yourself so you can be ready for everyday challenges.

Children can sense how their parents feel. You can help your child by projecting safety, which is the primary psychological need of every child.

Advances in development of appliances and rehabilitation techniques

Today, thanks to the progress of medicine and technology, most children with a spinal cord injury have almost the average human life expectancy, which was not conceivable a hundred years ago.

Apart from prolonging life expectancy, various tools and techniques in rehabilitation and care help preserve the quality of life.

The social environment is also progressing, which is evident in the increase (although a slight and insufficient one) in the number of places accessible to people in a wheelchair. The public is more sensitive to disability issues, so children with disabilities are more and more integrated into their environment and connected to their peers.

Importance of independence for quality of life

An important question that arises is the one of your child’s future, that is, how the spinal cord injury or spina bifida will affect the development of your child through various stages of life, from puberty to possibly starting their own family.

When children are in the preschool age, it is advisable to start raising their level of independence, gradually introducing actions that will be a part of their lives, e.g. self-cateterisation.

By puberty you need to teach and train the child to perform as many actions as

 

possible independently and encourage them to try to learn new things and move their boundaries. Of course, the child’s potential should always be taken into account.

Independence will provide the child with security and confidence in their abilities. This also facilitates your child’s integration into society and the opportunity to achieve the highest possible quality of life.

There are many examples of how adults cope with conditions of the spinal cord injury or spina bifida — they fully participate in life, often completely independently. It is encouraging to remember that they were once children as well. On the road to independence, proper education and care were crucial for most of them.

Acting with realistic expectations

One of the probable questions is whether your child will ever be able to walk. As there are several types of injuries and conditions, and there are no answers which are true for every case. Nevertheless, it is important to bear in mind that, despite the same diagnosis, it is not certain that two people will have the same development or recovery.

It is equally important to maintain objectivity with faith in improving the situation and not to expect impossible. It is more useful for you and your child to work on solutions which can facilitate and improve your everyday life within the limits of what is possible.

The same applies to the question of whether the child will use medical aids forever. Some children no longer need them after a certain time. How long your child will need them depends on many factors and it is by no means recommended that you experiment alone without professional medical support because you can seriously endanger your child’s health.

Will your child be able to start a family?

This is a wide area because various parenting opportunities are available today, and in the future opportunities will certainly grow thanks to all the research in medicine. Your child is likely to have a wider choice to find parenting opportunities in the near future.

Tips for everyday life:

  • Inform yourself and learn about the condition of your child from various sources;
  • Get involved in the work of associations and clubs;
  • Keep up to date with new knowledge — ask and consult health professionals about rehabilitation programs, possible surgical procedures in treating the condition and medical aids for making everyday life easier.

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