Month: May 2015


May
2015

A Good Nights Sleep for Children with Special Needs

categories: Health
Pencil drawing of a child sleeping
The drawing is by John Vanderpoel

Sleep helps us learn well, behave well, feel well and stay well. Many children with neurodevelopmental disabilities [NDD] already struggle with learning, behavior and health. For them, sleep is particularly important. Children with NDD who sleep poorly have more seizures; take more medication; and have more problems with learning and behavior at school. [James Jan et al, “Sleep Hygiene for Children with Neurodevelopmental Disabilities,” Pediatrics 122: 1343-1350, 2008].

Though sleep problems are more common in children with NDD, there is “nearly complete absence of research” on the subject. In 2008, a group of experts recognized this and came together for the “first paper” on this topic. [cited above]

The experts raised concerns too about the parents of children with NDD. When children are up at night, so is everyone else. Parents of children with NDD are often very sleep deprived and have poorer health later in life. However, less than half of those parents talk to their doctors about sleep. This may be because parents of children with
NDD, especially children with night seizures or wandering, often sleep beside their children and may worry that their doctors will disapprove.

And what would the doctor recommend anyway? That all children need:

  • a bedtime routine that is regular and relaxing; and
  • a bedroom that is safe, quiet, cool, and dark

How does that advice apply to children with NDD? The experts recommend:

  • A very regular bedtime—many children with
    NDD cannot tolerate more than a one-hour difference between their weekdays vs. weekend bedtime.
  • A relaxing routine—children with
    NDD may not find typical bedtime activities relaxing. Children with autism may find baths upsetting, not soothing. The choice of bedtime stories may require extra thought. Reach Out and Read has a PDF about reading to children with
    NDD at: Reading to Children with Disabilities
  • A safe bedroom—some children with
    NDDs may be awake during the night and get into mischief or danger. Doctors might suggest a “posey bed” that has zippered netting to keep the child safely in bed. Parents of children with seizure disorders may want to ask about safety pillows and monitor systems.
  • A soothing space—children with NDD who are particularly sensitive to sound may benefit from white-noise machines. Those who have difficulty keeping a steady body temperature do well with ‘honeycomb’ sheets or pajamas made from special fabrics. Children with low vision may sleep better in a room darkened by ‘black out’ curtains, while others may be too anxious to sleep without a nightlight. Avoiding “blue light” from computer screens and TVs seems important for most children. Other adjustments to the type of lighting may also be helpful.

More honest conversations and more research is needed so everyone can enjoy a good night’s sleep.


May
2015

Mental Illness: “In Our Own Voice”

categories: Mental Illness
Woman raising arms with confidence
Woman raising arms with confidence

Background

Mental or emotional problems are the fourth leading cause of disability in the United States.1 Most people with mental illness can see real improvements with the right treatment. Some mental illnesses are even preventable. Unfortunately, access to services is a big problem. Adding to that, we are often afraid of people with mental illness because of stereotypes shown in the news. A general lack of information, especially when it comes to treatment and recovery, also plays into this fear.

Uncovering Mental Illness

Last spring, I had saw a presentation called “In Our Own Voice” by the National Alliance on Mental Illness (NAMI). Local NAMI chapters run this program in their communities, often at high schools and colleges. Each presentation is led by two people in recovery from a serious mental illness. They aim to reduce the fear and stigma linked to mental illness by sharing their experience.

“In Our Own Voice” is broken up into five segments:

  • Dark days (the hardest part of their struggle with mental illness)
  • Acceptance (how they learned to accept their mental illness as an important step on their path to recovery)
  • Treatment (the specific treatment plans that have worked for them)
  • Coping Strategies (strategies that have helped them achieve and maintain mental wellness)
  • Successes, hopes, and dreams (reflections on success and goals for the future)

Each segment starts with a video clip of several people with mental illness telling their stories. NAMI presenters pause the video in between each segment and share their own stories.

My Experience

“In Our Own Voice” was an eye-opening and uplifting presentation. I noticed that everyone had a unique story, but there were many common themes. For example, most had a hard time accepting their illness. It was also really hard for them to find the right providers, medications or therapies. Finding the right plan often took years of trying doctors and treatments that didn’t work. Some struggled with family relationships and lost those relationships altogether. Many found the unconditional love of a pet to be really valuable. Everyone had successes to share and hope for the future.

I felt that the program empowered the audience with new perspective. We also had the rare opportunity of being able to ask any questions we had about mental illness in a setting where this was encouraged and expected. It was clear that the presentation also empowers the NAMI presenters because they know that they are making a difference by sharing their stories. As awareness spreads, hopefully this will lead to better access to services and more people can live in recovery.

More information about the National Alliance on Mental Illness and the “In Our Own Voice” program.

1 Brault, M. Americans with disabilities: 2005, current population reports, P70-117, Washington, DC: US Census Bureau; 2008.