ALS Parent Diagnosis: A Comprehensive Guide to Effortlessly Help Kids Cope
Amyotrophic lateral sclerosis, abbreviated as ALS, is a progressive and often fatal neurodegenerative disease. It affects nerve cells in the brain and spinal cord leading to loss of muscle control. When we talk about an ALS parent diagnosis, it means a situation where a parent is diagnosed with this debilitating condition.
For children, an ALS parent diagnosis can be a life-altering and complex event to understand and accept. However, with well-aimed interventions, strategies for mental health support, and open communication, children can not only understand but also cope with this challenging event effortlessly.
Understanding the ALS Parent Diagnosis
Before helping kids cope with an ALS parent diagnosis, we must understand what this illness means. ALS, sometimes called Lou Gehrig’s disease, leads to the gradual degeneration and death of motor neurons [1]. The disease disrupts normal nerve communication, ultimately inducing muscle weakness, disability, and sometimes leading to respiratory failure. This usually hard-to-diagnose disease has no known cure as of today [2].
According to data from the ALS Association, the average person living with ALS survives two to five years from the time of diagnosis. Despite this grim prognosis, about 10% survive more than 10 years [3].
An ALS parent diagnosis can bring a myriad of questions in a child’s mind, from why is my parent sick, to questions about their own susceptibility. It is in an environment of care, patience and understanding, kids can put these concerns to rest.
Kids Coping: Effortless Ways to Handle an ALS Parent Diagnosis
1. Encourage Open Communication
Often, children have a lot of unanswered questions in their minds concerning the illness. The first step in helping them cope is to encourage open communication. Have age-appropriate, honest discussions about ALS, how it will affect the parent, and what changes can be expected. Answer their questions as best as you can, and reassure them [4].
2. Provide Emotional Support
Kids dealing with an ALS parent diagnosis might feel a whirlwind of emotions. Ensuring they have ongoing emotional support is key to helping them cope. Seek out counseling or therapy, if required, and encourage them to share their feelings regularly.
3. Retain Normalcy
Try to maintain a normal routine as much as possible. This means regular school schedules, extracurricular activities, playtime, bedtime stories, everything that reassures the child that life can still go on, albeit a little differently.
4. Help with Adaptation
Help children understand that certain adaptations will be needed as the illness progresses. This could include caregiving responsibilities or learning to use new assistive devices. Providing the right guidance can help them adapt effortlessly.
5. Build A Support System
Bolstering a support system, with friends, extended family, or community support groups, can provide an environment of reassurance [5]. Organizations like the ALS Association also offer resources and programs, including Camp HLC, a retreat for children dealing with an ALS parent diagnosis [5].
Sources:
[1] National Institute of Neurological Disorders and Stroke – NINDS – ALS Information Page
[2] Mayo Clinic – ALS – Symptoms and causes
[3] The ALS Association – Understanding ALS
[4] Larry King Cardiac Foundation – Communicating With Young Children
[5] The ALS Association – Support Groups and Camp HLC
In conclusion, an ALS parent diagnosis brings challenges for the whole family, and children, in particular, require special care and understanding. With patience, love, and the right resources, they can effectively navigate this trying time. If you need to discuss your specific ALS and Real Water case, please feel free to call 702-385-6000 or visit our contact page. For more informative articles, please visit our blog page on the site.
