Tag: youth with disabilities

A Good Nights Sleep for Children with Special Needs

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.

Self-determination for Youth with disabilities

Alarm clock displaying timeExpectations for Youth with Disabilities

As a Transition Specialist, I attend a lot of meetings with families to help plan for future opportunities for young adults with disabilities. I love meeting with families to think through how to help young adults have a meaningful life after high school. I see potential in all young adults. Sadly, families and schools often help young adults too much. That limits skill development. An important skill for young adults to develop is making their own decisions.  When they make more of their own decisions, they realize the importance of responsibility.

Do Accommodations help?

I find many accommodations are necessary for young adults to learn to be independent. On the other hand, I also find accommodations can limit a young adult’s growth at times. One example I often see is that young adults with disabilities often have more flexibility when it comes to being on time or attending classes. This is an example of a special rule most young adults with disabilities do not truly need. It teaches them a bad lesson around responsibility.

Why should we push youth with disabilities to follow the same rules?

Accommodations that allow young adults to play by a different set of rules sends the wrong message. That does not prepare young adults for life after high school.  In the world of work, employers are often not as forgiving when it comes to being late for work, or not showing up at all. During the transition years of high school, it is important to teach independence and responsibility.  These are the most important skills that students will need in college, employment, or other community involvement. Most of the students I have worked with hope for at least one or more of these activities when we talk about future goals.

How can we help youth with disabilities be more prepared?

We need to put more effort and thought into teaching lessons, around responsibility and independence, to young adults with disabilities.  Massachusetts has a goal for all young adults with disabilities to transition into the community, and to have a meaningful life that, if possible, includes working. Responsibility is one of the main skills that can help young adults make this goal a reality.  I work with families and schools to practice self-determination for young adults with disabilities. Self-determination is a strategy that encourages independence and choice-making, which can lead to more responsibility and a more-fulfilling adult life.  We need to make sure we provide all necessary supports to help young adults with disabilities reach their full potential, but not teach those who are able that

Mentoring Program for Youth with Disabilities Makes a Difference

When you were growing up, who made you feel good about yourself?

For me, I think that person was my brother. Although he teased me ruthlessly when we were young, he was always there for me… And when he went off to college, his letters were a precious reminder that there was someone who thought I was extraordinary.

Mentoring Program addresses a need

Everyone needs someone to make them feel good about themselves, and for many youth, mentoring programs were established to offer that support.

In 1985, Regina Snowden established Partners for Youth with Disabilities Inc (PYD) to address this specific need. As a community based mentoring program, PYD now serves youth of all disabilities between the ages of 6-24 years old.

Addressing the whole child

Last month I met staff at PYD and was truly inspired by their passion and commitment to this mission. I began by meeting with Kaela Vronsky, Mentoring and National Center Director who gave an overview of their comprehensive programs.

“Our goal is to address the whole child and use our programs, including mentoring, to help facilitate a smooth transition to independent adulthood. PYD now includes our Access to Theater, Making Healthy Connections, and Young Entrepreneurs Programs. ”

Mentoring makes a difference.

Lynn and her mentee

Jeff Lafata, Mentor Match Specialist then shared his thoughts about why people ask for mentors. “For children, some have really bad self esteem and want help. For older youth with disabilities, many are getting ready for college or preparing for a job and want a mentor with a disability to let them know they too can be successful.”

He then spoke of a match where he was personally inspired. “We had a

Juan and his mentee
Juan and his mentee

mentee who was 22 and a wheelchair user. During the interview he was extremely dynamic talking about an internship he would be doing at a recording studio. But he could also be depressed and didn’t really identify with having a disability. We matched him with a mentor who was 30 years old, also a wheelchair user, married, and had his own business. By meeting him, he could see it was possible to be where he wanted to go.”

Think about being a mentor

 PYD presently has 65 active matches, with an additional 50 youth on the waiting list; 80% are male who prefer a male mentor. Statistically, that means for every adult male on the mentor waiting list there are 8 youth looking to be matched specifically with a male mentor.

So if you or someone you know is interested in being a mentor, especially your male friends, contact Jeff at jlafata@pyd.org

After visiting this wonderful organization, I assure you it will be worth the call.