Tag: Family Support

After School

What do you do after school?child playing a video game

Deciding what to do after a long day at school can be difficult for any child or young adult.  Do you do your homework, hang out with friends, watch TV or play video games? Parents are often very involved in making sure their children have something to do.  Questions about activities for after school become even more difficult when you have a child or young adult with a disability.  Parents have to consider the supports that are needed in order to make sure their child has a structured and supervised afternoon. While some parents are home when their children get home from school in the early afternoon, many parents are working. Most families these days rely on two incomes to support their household.  Therefore, parents must look for supports from the school or community for after school care.

Unfortunately, finding after school programs poses several barriers for families with children with disabilities.  For one, many after school programs are for younger children. This is a major challenge for families with transitioning young adults who still require a supervised and supported afternoon.  Not only are these programs for younger children, but they are for children that do not have disabilities and high needs for support.  Generally, the after school programs have an adult to child ratio that cannot support young adults or children who cannot be independent.  Another barrier for after school programs is that they usually are not free. The expense for after school care is another challenge for families to figure out a structured afternoon.

Schools can be a great resource for families with children and young adults with disabilities, but often close the doors after the school day is over.  Schools need to rethink how the value of after-school activities could be used to help children and young adults work on many of the social, emotional, leisure and everyday-life skills. With additional supports after school, we could see many gains in student success during the school day.  Resources and staff time would be a limitation for schools to implement after school programs. However, community organizations that support individuals with disabilities could collaborate with schools to create after-school programs that would address a huge gap in the system of care. It’s time for schools and organizations to think outside of the box and partner with families to meet student needs.

Multiple Sclerosis Caregivers Can Make a Difference

MS-caregiverOver the past three weeks, we have discussed some of the invisible symptoms that are associated with Multiple Sclerosis (MS). Challenges that people with MS may be facing every day, but others aren’t aware of. Awareness of these invisible symptoms is especially critical for caregivers.

We focused on depression and cognition, but other invisible symptoms can have a significant impact on daily activities and quality of life. Symptoms like pain, visual disturbances, fatigue, and bladder dysfunction might go unnoticed by friends and family, and it is extremely important for caregivers to have awareness and knowledge of them.

The simple fact is when invisible symptoms are addressed, it can truly make a difference.


Stepping In

When MS impacts a person’s ability to manage independently, someone may need to step in to help. That someone can be a spouse, partner, an adult child, parent, sibling, or even a close friend.

The key to being a good helper is knowing what the person needs and invisible symptoms can pose a challenge to understanding those needs. Symptoms can even change day to day, creating more confusion about the appropriate types and levels of support.

Two Way Communication Is Vital

Bob’s* wife, Paula, has MS and he has been her primary caregiver for more than 20 years. Paula has used a wheelchair for 15 years and most days Bob feels confident helping her dress and transfer to her chair. But when her MS symptoms flare up, Paula can have new symptoms of pain and double vision.

Bob shared that he never knows what each day will bring, and he relies on Paula to tell him how she is feeling so that he can adjust their routine. Two-way communication is important, as it makes it easier for both Bob and Paula to have a clear understanding of needs and expectations.

Caregivers Taking Care Of Themselves

It is important to remember that the caregiver must take care of their own physical and emotional health too. The risk of caregiver burnout can be very real, but there are steps to help avoid or reduce it.

Seeking emotional support and arranging for additional help can allow the caregiver to focus on their needs and remain a strong support for the person with MS.

The National Family Caregivers Association and   www.Caregiver.com are organizations that focus on supporting the caregiver. The National MS Society also offers information and resources for caregivers. You can view these materials at National MS Society Caregiver Resources Page or call the Society’s information and resource line at 800-344-4867.

Please join us next week as we review some helpful resources for living with MS.

*Names have been changed.

Getting Involved in Shriver Center Research: What’s In It for Me?

Young boy involved in table top activity with researcher

This month we are  pleased to welcome our guest blogger, Elaine Gabovitch, who will share her personal experience as a parent participating in research at the Shriver Center.

The First Time

I remember the first time I signed up my then-10-year-old son for a research study. Combing through local disability listservs to find tips and resources to help him, I came upon a study posting from the Shriver Center about eating and obesity in children with Autism Spectrum Disorders (ASDs). Something about it caught my eye and caused me to call and find out more. What was it about this particular posting that made me act?

The Timing

Maybe it was because my son was 10 and the timing seemed right. At this age, we had gotten through the earliest, most urgent days of learning about and responding to his disability. We had some things in place that were starting to work. It seemed that we may finally have the time.

The Topic

Maybe it was because the study was eating habits, something that resonated for us. We had struggled through my son eating little more than chicken nuggets and pizza for many years, suffering through gag reflexes from the smells of certain foods. I worried about how to help him eat better. Answering questions might give me a way to make sense of it all, or at least help research learn enough to help kids like mine in the future.

Giving Back

Maybe it was because I wanted to give back to “the village” of people who had helped us. The researchers at the Shriver Center were not the same professionals who assisted our family in the early days, but there was something about helping them understand this thorny problem that felt right.
Whatever the reason was, something tipped my decision scale and we signed up. And it was interesting, fun, and most importantly, easy to do. But the timing had to be right, and we all had to be ready. Once we were, it was a wonderful experience that I encourage families to try.

Years later, I now work at the Shriver Center and think about research a lot. I see many families getting involved in research as I once did. It is gratifying to see them helping to expand Shriver’s knowledge base through taking part in our studies.

There are many reasons to get involved in Shriver Center research that answer the question, “What’s in it for me?” We’ll start to answer that question next week by looking at the Shriver Center’s health promotion studies, such as the one we participated in all those years ago.

About the author

Elaine is the Director of Family & Community Partnerships at the E.K. Shriver Center and an instructor in the Department of Family Medicine & Community Health of UMass Medical School and Family Faculty for the Leadership Education in Neurodevelopmental Disabilities (LEND) Program at the Shriver Center.

Elaine Gabovitch
Elaine Gabovitch


A Caregiver’s View of Adult Family Care

The dictionary definition of “caregiver” is “an unpaid relative or friend of a disabled individual who helps that individual with his or her activities of daily living.” Statistics show that as many as one in five adults in the US are caregivers.

Many people provide care giving services with nothing more that the motivation of their heart, yet sometimes it is because there is no other way for a loved one to get care. And even though so many of us are doing the work, being a caregiver remains a very stressful and lonely thing to do. Where do you go for help? Who will pay your bills if you need to stop working to be a caregiver? Where do you call if you get sick? Who can you call with your concerns? What will happen to your family member if something happens to you?

Support for caregivers is available

As a member of the National Family Caregivers Association, our Adult Family Care program is particularly equipped to help caregivers through the stressful aspects of their work. So much more than training and networking, being a part of an AFC program gives caregivers an outlet for their concerns and essential support. Of course there is the required training, and plenty of opportunities for networking and learning more. However, nothing tops the opportunity for face to face contact over a cup of coffee. That is what George’s parents’ discovered.

George with his parents“Caring for George when he returned from his day program was becoming harder and harder as his needs were changing” George’s mother Aurora told us. “We knew he needed more support than we could give him. But ‘how’ and ‘who to turn to’ were questions we did not know how to ask”.

Aurora shares their family’s story

“We attended an AFC workshop and right away started working with Kathy Kopitsky to see if we would qualify for services. The enrollment process seemed to take many months. Now, with greater financial assistance, George will begin to receive added support and services. And for us, we will have the help we need to keep George at home. We know that a day will come when we can no longer care for George, but for now, his home is with us, and this fills us with great happiness.”

Next week’s blog will provide a list of resources for Adult Family Care Programs. Check it out. After all, everyone needs nurturing and support, especially if they are providing care for others.