When a Dear Someone has ALS
What if an important person in a child’s life suddenly gets affected by ALS? Three child brochures for different age groups are now available, so that everyone has a well-adapted version where everything is explained in an understandable manner. There is also a brochure to read to the littlest ones who cannot read yet. In this way, parents are able to inform them gently about a special person having ALS. Friends, parents, school and medical professionals have their adapted version as well.
These brochures can be consulted by clicking with the right hand mouse button on the file below and then on “save target as …” to download and read the brochure.
These brochures do not exist in printed versions, but you can print them yourselves. If you have no internet or printer, you can contact our bureau so that we can provide you with a printed version of the brochures.
These brochures are currently only available in Dutch
Support to teenagers from families who have to deal with ALS
Teens are not always the easiest period in life, even when everything is well balanced. If at that moment one of the parents or the family is confronted with the deadly disease ALS, this can be extremely overwhelming.
The first thing parents and family members have to do is inform them about the disease. The more they know, the better they can understand the situation. Experts say that most teens will benefit from talking openly about such painful things, because at that age they do no longer want to be treated as children.
This way teens will be involved in their own way and want to help, but their contribution in this help will depend on the relation with their parent, school commitments and their social life. Because teens are just at that stage in their life where they want to distinguish from their parents and have more need for privacy, finding the right balance between the time they spend with their sick parent and the time they spend with peers and their hobbies is not that easy.
What is important for them is that they get the confidence to assist the family in critical situations. But it is equally important they have enough time for their friends, their hobbies and after-school activities. They have to be able to take some distance from the difficult situation at regular intervals. Therefore it is important to determine whether this balance is in equilibrium with the teen.
Families confronted with ALS have a lot of stress and sorrow and as such a lot of mood swings in daily life. To be able to cope with this it might be helpful to obtain some advice from outside or to talk to a counselor, such as a general practitioner, a priest, a psychologist or with an employee of a center for mental health. Also the teen may not be forgotten here.