Month: June 2019


Jun
2019

Finding a Balance: How to be a Sister or Brother (Sibling) Caregiver of a Person with a Disability

categories: Education

 

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My sister Emily has Down syndrome and autism. I have helped take care of Emily for most of my life. Most of the time it feels normal to care for my sister and keep the usual sister bond with her. Sometimes it is hard to care for her and be a sister.

Here are some tips on taking on these two roles:

The Sister or Brother (Sibling) Role:

  1. Be a friend. Treat your sister or brother (sibling) with disabilities like any other brother or sister. Stand up for each other. Share your secrets and have some fun.
  2. Don’t be a tattle tale. Your mom and dad need to know some things. But they don’t need to know everything. There is no need to get your sister or brother (sibling) in trouble.
  3. It’s okay to fight. It is okay to get into fights with your sister or brother (sibling). My sister Emily and I argue about sharing clothes. We also get in fights about if we want to go out for pizza or stay at home to watch TV. Sometimes we want different things.
  4. No parents, no rules. We like to live by our saying “no parents, no rules” when our mom and dad are not home. Okay, there are some rules. But bedtimes are later. We also might eat too much junk food.

A Caregiver Role:

  1. Be serious. Sometimes you might care for your sister or brother (sibling). It is important to pay attention. You might need to do serious jobs like give your sister or brother (sibling) medicine.
  2. Be nice. It is easy to pick fights over things like who gets the last piece of candy. But sometimes your sister or brother (sibling) might feel sick. It is a good idea to let go of sister or brother (sibling) fighting for a while. Just be nice like a nurse would be.
  3. Ask for help. Sometimes it is okay to ask your mom or dad to find another person to take care of your sister or brother (sibling). You are busy and growing too. It is okay to take time for yourself!
  4. Talk to other sister or brother (sibling) caregivers. Caring for your sister or brother (sibling) is special. It is something you may want to talk about with other sister or brother (sibling) caregivers. Meet other sister or brother (sibling) caregivers here. 

To learn more about being a sister or brother (sibling) of a person with a disability, please visit the Massachusetts Sibling Support Network website.


Jun
2019

We all Have Our Fears: Unfiltered, Runaway Thoughts of a Sibling

categories: Education, Family, Independence

Always Thinking

Sometimes I get worried thinking about my 30-year old brother, CJ. I think of how our parents are getting older. I think about where he can get help since he is not in school. I think of what he needs to be healthy. I think of how people treat him.

All of this thinking takes me down a path of questions with no end.

What If…

What if something bad happens to my parents?  

What if my parents’ health gets worse?

What if my mom can’t care for my brother CJ anymore?

What if my dad can no longer work and provide for the family?

What if CJ does not get the help he needs?

What if I have to stop working to care for CJ?

What if CJ gets upset because he can’t express his feelings?

What if he hurts himself again?

What if something bad happens to CJ because people are afraid of him?

What if someone calls the police on him again?

What if something bad happens to CJ because people are afraid of him?

What if someone calls the police on him again?

What if they put him in the hospital again?

What if they give him drugs to make him sleep again?

What if people keep treating CJ like he is not human?

For more information and tips on navigating through life as a sibling of someone with autism, refer to A Siblings Guide to Autism: An Autism Speak Family Support Tool Kit.


Jun
2019

Lessons in Listening

categories: Deaf & Hard of Hearing, Parenting

I have learned a lot from all of my children – about who I am, what matters, how right my own mother was!  What it means to listen, to really listen, as a mom and as a therapist, was shown to me through my journey with my youngest child.  In today’s blog, I’d like to start at the beginning of that journey.

When I was pregnant with my third daughter, I thought I knew all that I needed to know to take good care of her and enjoy doing it.  I had two children who were healthy and happy and well-adjusted and I hadn’t broken them or steered them wrong.  I was going to relax with this new baby.  I was going to revel in her small-ness and snuggle her all day and not worry as much about schedules and routines and all the concerns of new moms.  I knew how to do this.  I really had given it that much thought!  So when just days after my sweet girl was born I learned that she was deaf, I was more than a little thrown.  I did not know how to do this.

*More than 95% of deaf and hard of hearing babies are born to hearing parents.*

For five days I thought everything was fine.  I fed her and held her and shared her with her sisters.  I was a tired but happy and confident mom.  Minutes after learning she was deaf, I questioned everything.  How could it be that she hadn’t heard me sing to her, talk to her, let her know I was there?  Was she scared?  Was she ok?  How would I tell her stories and talk to her about boys? I had so much to learn and it did not feel like I would ever have the energy it would take to figure it all out.

*My daughter was the first deaf person I ever knew.*

I remember those days early in her life.  I felt lost when I thought too much, but she was happy and healthy and she responded to me.  She liked to be close.  She liked to eat!  She liked to sway and dance.  I remember feeling silly singing to her because she couldn’t hear me.   I touched my lips to her forehead as I sang and hummed anyway.  I touched my face to her cheek when I told her I loved her.  She couldn’t hear me, but I could listen to her, for her.  I could pay attention in a new way.

If you are the parent of a new baby who is deaf or hard of hearing and want information on resources for you or your child, connect with the MA Universal Newborn Hearing Screening Program.


Jun
2019

Use of an AAC, the good and the bad

categories: Accessibility, Autism

AAC Board

As a BCBA, I teach people how to use Augmentative & Alternative Communication (AAC) devices. AAC devices help people communicate who have trouble asking for things they want.

The good results:

An AAC device enables people to do more in their home and community. When an AAC device is successful:

  • The whole team works together.
  • The team uses the AAC device to communicate.
  • The AAC device is setup for the person.
  • The AAC device enables the person to get their favorite things.

When everyone works together, an AAC device can enable people to get their favorite things.

The Bad results:

When the wrong program used, or the AAC Device is setup wrong. It often ends up going unused. This happens because:

  • The AAC is too complicated.
  • People don’t use the AAC device.
  • The person’s favorite things are not added to the AAC device.

AAC Devices can help people. Work with an expert when you start working with an AAC device.

Some online resources for selecting AAC programs:

Jane Farrell AAC App List – a list of AAC Apps.

PrAACtical AAC Blog – more AAC resources.

 

 

 

 

 


Jun
2019

Successful steps in finding apartments for a person with a disability

categories: Home, Independence

 

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The cost of places to live has been going up. A lot of people have a hard time finding a place to live. People with a disability have a harder time in finding a place to live because the apartment has a long waiting lists and it takes a lot of years to get to the top of the list.

  1. Sit with the person and make a list of places they want to live in.
  2. Go online to any state housing website and look through their list of apartments
  3. Look for the department that has all the states apartments for an application. Print an application and mail it.
  4. Call the main office and ask them if they have an open apartment. If there is one, ask for an application to be sent to you.
  5. If you have a case worker, talk to your case worker to see if they know about any place that you could live in.
  6. Keep calling places and ask if someone moved out.
  7. Put your name on email lists.
  8. You can look for an apartment by writing where you want to live and how many bedrooms you want. They also have apartments that you can pay for your rent depending on how much money you make.
  9. Check: www.massaccesshousingregistry.org

This website has a list of places to live that have low-priced rent and a person with disability can live in: www.masshousing.com


Jun
2019

What does it take to be a support worker for someone with a disability?

categories: Health, Independence

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I have been working with people with a disability for 10 years. I want to share what I think  they should be good at. A person has to like working with other people and helping them. Support workers do a lot of work and they are great people. The name of the job might be different at different places, but you still do the same things.

 

 

Support workers:

  • Talk to people with respect
  • Calm                                                                                     ""
  • Caring
  • Selfless
  • Think about things before you do them
  • Talk to everyone
  • Being kind
  • Teach people to speak up for themselves
  • Understand people
  • Assess situations
  • Be honest to people
  • Work with other people
  • Be self-confident
  • Trust
  • Show compassion
  • Be positive
  • Be a good listener
  • Cheer people up
  • Motivate

This site has 13 traits of a support worker: https://personalsupportworkerhq.com/qualities-of-a-psw/


Jun
2019

Massachusetts Pediatric Home Nursing Care Campaign

categories: Health, Parenting

 

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I am the parent of a child with a disability. She has a lot of medical needs too.

Kids who have a lot of medical needs can have a nurse in their home. MassHealth approves this service.

Parents have a hard time finding nurses. There are not enough nurses working in homes.

Nurses who work in homes make a lot less money than nurses in the hospital. This is a big problem. 

The campaign started in April 2016 to help parents find nurses at home. 

Nurses at home keep kids:

  1. Safe
  2. Healthier
  3. Out of the hospital
  4. Attending school
  5. Being in the community

If you want to learn more, email manursingcampaign@gmail.com.