Tag: healthy choices for people with disabilities

Keeping Colon Cancer Away

picture of a person colonKeeping healthy is important for everyone.  People who have developmental disabilities need to do the same things to stay healthy as everybody else.  This can be hard. Doctors and nurses do not always talk with people who have disabilities about staying healthy.  Doctors and nurses can be very busy fixing health problems. Sometimes they forget to try to stop problems before they start.

Why is staying healthy so important?

  • Because we feel good when we are healthy!
  • It is easier to stop sickness before it starts. It is harder to make sickness go away once we have it.

Colon cancer is a type of sickness that is very common in people who have disabilities.

  • Cancer is what happens when our bodies grow extra pieces inside that are not supposed to be there.
  • When cancer happens in the colon, it is called colon cancer.
  • Our colons hold our solid waste, or poop, until it is time to let it out of our bodies.

Colon cancer is very serious. It can:

  • Make you feel sick.
  • Make it hard to eat and drink.
  • Cause problems with using the bathroom
  • Be very painful
  • Sometimes, make you die.

There is some good news. There are a lot of things we can do so we do not get colon cancer. We can also get checked by a doctor or nurse to catch colon cancer in our bodies before it makes us sick.

First, let’s talk about preventing colon cancer. This means we will talk about the things we can do to keep from getting colon cancer.

  • The food you eat is very important to keep your colon healthy. Eating a lot of red meat like beef, pork, or lamb is bad for your colon. It is also bad to eat a lot of sandwich meat or hot dogs.
  • You can help your colon by eating more fruits, vegetables, and whole grains like oats, brown rice and 100% whole grain breads. Be sure to speak to your doctor before you make any changes to your diet.
  • Keeping a healthy weight, or not having too much fat on your body is also important to keeping your colon healthy. You should ask your doctor what a healthy weight is for your body. Also ask what kind of exercise you can do to lose weight or keep a healthy weight. Even if you are not overweight, staying active is important to keep your colon healthy. Any activity that is more than you usually do may help your colon stay healthy!
  • Our bad habits can be bad for our colons, too. If you smoke, try to quit. Ask your doctor what you can try to help you quit. There are special medicines that can make it easier to quit. There is a pill, a skin patch and a special chewing gum. If you drink alcohol, drink no more than one drink a day if you are a woman.  If you are a man, drink no more than two drinks a day.  If you drink alcohol every day, make sure you tell your doctor. Also tell your doctor if you plan to drink less or stop drinking.

Sometimes we can still get colon cancer even if we are healthy. There is good news, though. If colon cancer is found early, doctors can treat it before it has a chance to make us sick.

To catch colon cancer early, talk to your doctor!  Tell the doctor that you would like to know more about getting checked for colon cancer. Usually you start getting checked for colon cancer once you are 50 years old. If someone in your family has had colon cancer, make sure to tell your doctor or nurse. They should talk with you about getting checked for colon cancer sooner.

There are a few different ways that you can get checked.

  • The most common way is to have a test called a colonoscopy. The day before the test you will drink a special drink or take some medicine. This will make you empty your bowels, or poop. At the test you will be given medicine to help you relax and sleep. The doctor will look inside your colon with a small camera.  The doctor will look to see if there is any colon cancer. If there is cancer that is still small, the doctor will remove it. The doctor can also remove any small polyps. Polyps are pieces of your colon that look like they might turn into cancer.  This test should be done every 10 years. If colon cancer or polyps are found, you will need to have this test more often.
  • A sigmoidoscopy is like a colonoscopy. But, it doesn’t look at your whole colon. This test uses a small camera. It looks inside the lower part of the colon, called the sigmoid colon. Sometimes this type of test is easier for people to have. You do not need to drink the special drink or take medicine that makes you empty your bowels, or poop. You also usually do not need medicine to make you relaxed and sleepy. This test should be repeated every 5 years.
  • There is a new type of test called Cologuard. You do not need to drink a special drink or take medicine first. You can do this test at home. First, you collect a small bit of solid waste, or poop. Then you send it in a special kit in the mail. The kit checks your solid waste, or poop, for a change in a chemical called DNA. This change may mean you have colon cancer. Then you’d need to have a colonoscopy to check for sure. Not everybody can have this kind of test. You should not have this test if you have had colon cancer. You should not have this test if you have colon problems. You should not have this test if somebody in your family has had colon cancer. This test should be repeated every 3 years.

Maybe you have read all of this and you are thinking that keeping colon cancer away sounds like a lot of work. Or, maybe you are having a hard time deciding what to do first. The most important thing you can do is talk with your doctor! Tell the doctor that you would like to stay healthy and keep colon cancer away. Doctors and nurses love to help people stay healthy. Sometimes they just need a friendly reminder about checking for colon cancer!

For more information, visit:

The American Cancer Society


Colon Cancer Alliance



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 Advocate Shares Experience as a Successful Trainer

Nora McShane, Guest Blogger

This week we introduce Nora McShane who is returning as a guest blogger to share her experience as a trainer. Nora has lived independently for the last six years and became involved with her self advocacy group  several years ago. She is currently the president of  the S.A.F.E. group at Minute Man Arc in Concord  and a member of their Board of Directors.

Becoming a trainer

Recently, I was asked by my mentor, Sue Crossley, to present a training about proper nutrition at an advocacy meeting in Worcester.  At first I felt a little anxious but I was also excited at the opportunity.

I was encouraged to give my own presentation entitled “Making Healthier Food Choices” as well as a separate training using an iPad. Sue came to my apartment and gave me training on how to use the iPad. The training made me feel more confident because I had learned a new skill.

Building confidence

When I got to the Worcester meeting I felt really excited. I was so honored to be able to teach my peers about nutrition and living a healthier lifestyle. There were around a dozen people from H.M.E.A. who were willing to hear me speak and be their trainer. Everyone watched and listened while I presented my own food plate demonstration. Everyone seemed eager to learn and ask questions.

After the training I felt very positive about my performance and I felt like I had accomplished a goal. I made positive strides toward being a more confident public speaker.

I’m glad I was asked to participate; it’s good to feel like I’ve been helpful. It feels good to share my knowledge with others.

Join us next week to hear about additional trainings being offered throughout the state by and for people with disabilities.

Health, Choice, and Responsibility: Self Advocates Take Control of Their Lives

Guest Blogger, Pam GreenThis week I am pleased to introduce our guest blogger, Pam Green, Shared Living Placement Coordinator and Self Advocacy Advisor for Horace Mann Educational Associates (H.M.E.A).

During my college experience, I first majored in Communication Disorders and then switched to Sports Management. Curiously enough, the first 15 years out of college I managed a Health Club then owned my own fitness studio. In 1994, I started working for H.M.E.A., a wonderful company that supports individuals with developmental disabilities.

It is here where I first learned about self-advocacy and the importance of opportunity for all.

Self Advocates choose to learn

Leaders Educate Advocacy Delegate Empower Respect Support (L.E.A.D.E.R.S.) GroupTwo years ago, with the support of H.M.E.A. I was offered the role of co-advisor for a local chapter of Mass Advocates Standing Strong, (M.A.S.S.). It soon became apparent that this group was eager to learn, explore, and take control of their lives.

While researching topics and trainings for this group, I came across the curriculum for My Health, My Choice and My Responsibility, developed by the Westchester Institute for Human Development in collaboration with the Self-Advocacy Association of New York State. Topics include developing a health plan, self-advocating at the doctor’s office, physical activity, nutrition, safety and cleanliness in the home, hygiene, and emotional health. The program is designed to be used directly by users with special needs to learn about healthy living.

Bingo! Finally, 33 years since college, I found a way to make BOTH of my majors relevant in this one training!

App offers self directed learning

What’s really wonderful about this training is Able Link’s cognitively accessible self-directed learning App for iPads. With monies received from a grant, we were able to purchase two iPads for the self-advocates to use during our sessions. We also incorporated the opportunity for each self-advocate to co-train with an advisor, adding to their learning experience.

Each session has been a wonderful collaboration of personal experience and sharing among the self-advocates. They listen to each other. The teach each other. They want to learn more.

If we truly want to support individuals with developmental disabilities, we must continue to offer individuals the opportunity to learn.

“Leadership and learning are indispensable to each other”
John Fitzgerald Kennedy

Adult Education: A Valuable Resource for People with Disabilities

When I think of the old saying by George Bernard Shaw, “Youth is wasted on the young”, I think I would have to add, “Education is also wasted on the young”. Having returned to college at the age of 53, I truly believe that education as an adult was far more exciting, fulfilling and definitely appreciated than when I was young.

And I don’t think I am alone in feeling this way.

Adult education is valued by all

Adult education, whether it be a bridge class or a masters level course, offers an opportunity to expand our thoughts and explore new subjects. We have all seen the brochures that come in the mail and are often left wondering if it is time to take up piano lessons or join a yoga class. The intent may be social, or you may simply want to improve your life in some way.

As an advisor for a self advocacy group, I have learned that adults with disabilities are interested in further education for the same reasons. For some it is social, yet for many, trainings are a way to improve their lives in a number of areas. From leadership training offered in a Self Advocacy Leadership Series to community employment offered through Explore, Prepare, Act, adults with disabilities are increasing their independence across the state.

Healthier choices

This month, we will learn more about a training that covers a topic near and dear to us all; choosing a healthier lifestyle. This doesn’t just include eating right and exercise but just as important, we will hear more about taking charge of your health in general. With the use of curriculum from an IPAD app, “My Health, My Choice, My Responsibility”, a self advocacy group from HMEA completed a comprehensive training that could be duplicated anywhere in the state.

Their advisor, Pam Green, will share her experience with the training, while a self advocate, Nora McShane, will discuss her experience as a trainer.

Join us this month to learn more about this unique training and how to take responsibility for your own heath.