April, 2016 - INDEX

Month: April 2016

20
Apr
2016

Autism Caregiver Support

Stress? Autism? Balance? Time.

Is it the techniques we choose? Or, is it the time it takes?

Is it possible? As a mom? To have balance? To manage stress?

As a mom to three children under 7, I am not sure. As a mom to a minimally verbal child with autism, I am really not sure. Things can get crazy. It’s difficult to step away from the stress. As caregivers, it is important that we care for ourselves. Easier said than done. When? How?

How can we take care of ourselves?

I think we all know that we have to do this. It’s the “how” that we all wonder about. How, exactly, do I care for a disabled child and take care of myself?
There are many studies that tell us that stress levels are high in moms of kids with autism. Still more tell us that if we manage the stress, we will be better moms. Caring for ourselves will help us care for others better. Okay. The question becomes how?

It’s about time…

A recent study at Vanderbilt University points to two techniques to manage stress. The first is mindfulness training. The second teaches a more cognitive approach. Both are led by peers. All well and good. I would love to try it. But, how are these people finding time? How could I possibly go? Researchers and policy makers are missing the point. We know how to care for ourselves. What we need is skilled, qualified care for our children. We cannot hire the babysitter down the street. The people that we hire require certain skills. Expensive, hard to find skills.

Do Researchers and Policy-Makers get it?

When will researchers and policy makers get it? Is it possible that just simply having time away has more of an effect on stress than the actual study intervention? I think it could. Imagine if an employer tried to work you like this? They can’t. There are Federal and State laws to protect employees. Not family caregivers.

85% of 43 million family caregivers in the U.S. right now don’t receive any respite services.
- National Alliance for Caregiving (NAC) and AARP Public Policy Institute, Caregiving in the US, 2015.
4/10 adults in the U.S. care for a family member with severe health issues
- PEW Research Center, June 20, 2013.
Care for the caregivers = More successful children. Happy healthy caregivers. Marriages. Siblings. All work to support the affected child. If the family functions well, the affected child will be better supported. A better supported child is more likely to succeed.

What can we do?

Get more information at The ARCH National Respite Network and The National Respite Coalition and The National Respite Coalition .
- You can find out how to contact your legislator. Or, find simple facts about respite and caregiving.
The Massachusetts Lifespan Respite Coalition offers information about statewide initiatives.
Find out if you and your child are eligible for services through the Department of Developmental Services.

06
Apr
2016

High Blood Sugar

categories: Health

As a future health worker, I am worried about how people with disabilities are getting sick with diabetes.

What is diabetes?

• Diabetes is a disease in which blood sugar is too high.

What can be done to prevent diabetes in people with disabilities?

Have your blood tested.
Be active every day.
Eat healthy food.
Use portion size.
Have a healthy weight.
Use medicine in a good manner.
Do not smoke.
Use sun protection.
Improve your health literacy.

For more information visit these websites.

04
Apr
2016

On Us

categories: Advocacy

Many meetings about disabled people do not include them. Disabled people have been left out of many talks and decisions. They can be about little things, like their daily lives. They can be about big things, like national rules about disabled people.

In the 1990s, however, an old term was translated into English. It quickly became the motto of the worldwide disability rights movement. In five words, it says exactly what disabled people want and how they want it.

“Nothing About Us Without Us”

In other words: do not talk about us without including us.
Do not make laws about us without asking what we think. Do not say something is wheelchair-accessible without talking to wheelchair users. Do not talk above us at meetings. Do not have panels of experts on autism without an autistic person. Do not make clothes for people with cerebral palsy without having people with cerebral palsy test them. Do not write books about blindness without blind people.

For most of history, disabled people have been seen as less than non-disabled people. People were locked up in places called institutions. They were often little better or a lot worse than jails. Many non-disabled people think disabled people need to be taken care of. They think disabled people cannot take charge, and make changes in their lives, or in the lives of other disabled people.

We disabled people know that is simply not true. We have a lot to say. To get our points across, we talk with:

sign language
speech devices
writing, and more

Today, the slogan “Nothing About Us Without Us” is the title to a popular book by James Charlton. It is about how disabled people are running their own lives. It’s about how they are changing the world. It is also the slogan of groups like the Autistic Self Advocacy Network. It was the theme of the United Nations International Day of the Disabled Person in 2003. It has even moved beyond the disability world. It has been used by other groups who are not treated well by others.

“Nothing About Us without Us” is a simple phrase. Yet it is very important. It tells everyone that disabled people want our voices to be heard. We want our thoughts to matter, because they do.