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

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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.

Use of an AAC, the good and the bad

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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.

 

 

 

 

 

The Human Service Workforce Crisis in Massachusetts

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Hello, my name is Cheryl Dolan and I work in human services.

I moved from the UK in 1999, when many humans service agencies could not find staff and went overseas to hire them. We still have this problem today. We need to look at why this is and what we can do to change it.

Why is there a shortage in staff?

  • More people need support and services than before so need more staff
  • Wages are low and not too many ways to get promoted
  • Lack of people who are trained to do the job well

How does this affect people?

  • People have high turnover or unqualified staff working with them
  • People not getting the best care
  • Programs have to close, People  are losing services or are on wait lists
  • Families become stretched and have no help

What are human service agencies doing to address the issue?

  • Looking at how technology can be used to support people and reduce some staffing needs
  • Working with local and federal government to support them by applying initiatives for state employees to human service agencies
  • Looking at how to attract, train, and retain skilled employees.

How can you help fix this?

  • Make your voice heard! Make the people you vote for know you want to see increase in funding for wages
  • Support agencies seeking increased funding to provide higher wages for staff
  • Join advocacy movements like The Caring Force     

"The Caring Force logo"

Additional materials

Who Will Care? The Workforce Crisis

The Caring Force

Boston Herald: Opinion  Workforce Crisis Threatens Community

Chicago Tribune:  Article– Care Worker  Shortage

Working with Autistic Adults in Medical Settings

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Monitoring blood pressure

Autistic people should be treated fairly at the doctor’s office. As an autistic adult myself, I’ve been treated well by some doctors and badly by others. Here are some tips for doctors, nurses, and other medical workers who work with autistic adults.

  • I’m an adult and should be treated like one. That means taking me seriously when I tell you how I’m feeling or what I need.
  • Sometimes the world around us can be really overwhelming. Things can be too noisy, too bright, or too rough.
  • Autistic people don’t all look or sound the same. We can be of any race, gender, age, or background.
  • Many autistic people like to be called autistic people, including me. That’s because we see it as an important part of ourselves. Don’t call me a “person with autism.” If you’d like to learn more, you can read this article about autism and language by Kate Ryan.
  • Some people can’t speak, but they can still talk to you in other ways. These ways include computers, tablets, letter boards, and other kinds of assistive technology. I do speak myself, but I know people who don’t.
  • You may need to break things down to make them more understandable. I don’t have a hard time with medical language, but some people do.
  • Autistic people still care about others, even though it may be hard for them to show it. There’s a difference between feeling something and being able to express it.

Make bedtime a fun routine

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Child getting ready to sleep

As a doctor for children, I often talk about sleep during wellness and sick visits.

Sleep is an important life skill. It teaches children how to calm themselves and rest. Parents have an important role in helping children to healthy sleep habits. Improved amount and quality of sleep affect children’s behavior and abilities to think.

Below I will discuss some tips that parents can practice for healthy sleep habits.

  • Decide with your family when is a good time to start sleep training.
  • Decide how many hours of sleep your children need. Infants sleep for 12-14 hours. Hours decrease gradually as children get older. On average, children need 10 hours of sleep. If they nap during the day, do not forget to account for nap time to the total daily sleep time. For example; 2 hours nap in the afternoon will leave your children with only 8-10 hours of sleep at night. That can be a reason why children go to bed late at night or wake up very early and refreshed.
  • Talk to your children about (tonight’s plan). For example “we will take a bath, read a story, and then it is bedtime”. Change the language based on your children’s understanding. Young children would benefit from (first…then strategy). For example “first we take a bath then we read a story”. Use picture books to share stories about sleep.
  • Use a reward system. Rewards can be increased or spaced out. Rewards can be an activity the children will enjoy, for example spending play time with parents, or reading a favorite book together.
  • Do not get discouraged quickly if some attempts are not successful. Experimenting is a key. Some plans do not work the first time or at all. Try different things. For example, some children may prefer bedtime stories and some may prefer bedtime song. Other different options parents can try; white noises, a night light, a security object/blanket or all of them.
  • Avoid high affect games or TV before bedtime. Bath and stories can help to relax your children.
  • Remind your children that bedtime is soon. For example “5 more minutes to bedtime”. Some children do not tolerate transitions quickly. You can use a fun or colorful alarm clock as a reminder.
  • Increase their Melatonin Dark room, with no TV or electronic devices.
  • Create sleep associations. Children like their routines. It is ideal if they go to sleep in similar conditions every night (same bed, room, lights off etc.).
  • For younger children, put them to bed semi-awake. Allow time for them to calm themselves. This way they learn to go back sleep if they woke up the middle of the night.
  • If your children cry in the middle of the night, attend to their needs. Comfort them, but avoid picking them up or bringing them to your bed.

Helpful Resources

Guardianship and Alternatives for Young Adults with Disabilities

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  • When people turn 18, they are legally adults.
  • They make their own medical, legal, and financial decisions.
  • This can be scary for families and young adults.
  • Parents want to stay involved with decision-making and meetings.
  • Guardianship is one way to address this.

Family discussion

 

Guardianship

  • A court decides if a person needs a guardian.
  • A Guardian will  make decisions for them
  • Guardians are a good idea for people who may never be able to make their own decisions.
  • Guardians should get training to learn their role.

Alternatives to Guardianship

 Power of Attorney:

  • A person can choose to have one and what areas they want them to help with.
  • A person can remove them when they are ready.
  • This is a good choice for people who need help now but will be able to make their own decisions one day.

Money Supports

  • Conservators, rep payees, and joint bank accounts can help manage money.

Health Care Proxy

  • The person chooses who will make medical decisions for them if they are unable to make them.

Supported Decision Making

How to Decide What Supports are Needed

Recommended reading:

 

Reversing a Guardianship Agreement

The Arc- Guardianship and Alternatives

 

My child does not want to go to school

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Children walking to school

Children walking to school

As a doctor for children, I often talk to parents about school refusal. There are many reasons  why children do not want to go to school and the reasons change with age.

Here I summarize a list for the most common causes of school refusal. Some are typical for age and some require help and support.

Separation anxiety. Children who become very sad and worry when their parents leave. It can start at 6-7 months of age. Peaks at age 15-18 months. Most children cry when parents leave, but can calm fast and they are happy to see their parents at pick up time. Children who cannot calm down, refuse to play with other kids, may need help.

Light bulbWhat parents can do;

  • Talk to your children about school in simple words “its School time, play time”.
  • Remind them of things they like to do at school.
  • Use rewards. A reward can be a fun activity that you do together.

Performance Anxiety. Definition: Children who escape certain class activities. Examples are; reading in front of the class or being called on to answer questions.

Light bulbWhat parents can do;

  • Talk to teachers, they will give important information about how your children are doing in the classroom.
  • Work with the teachers to make a plan, for example; allow time for them to raise hand or practice reading before the class starts.
  • Use stars reward system for “reading out loud”.
  • Tell them you are happy with their hard work, even if they were not successful.

Learning Disability (LD). Definition: difficulties with school academics. Difficulties can be in; reading, writing, math or in more than one topic.

Light bulbWhat parents can do;

ADHD. Definition: It is a medical condition that makes it difficult to listen and pay attention. It is due to changes in the brain chemicals. ADHD is more noticed when children move to higher grades. Children with ADHD can be misunderstood. As a result, making friends can be hard.

Light bulbWhat parents can do;

  • Talk with the teachers. Ask if your children act same at home and school?
  • Talk to your doctor. ADHD is very common and can be treated with medications and some additional help at home and school.
  • Schools can help and support children with ADHD. Know your rights, students with ADHD

Bullying. Definition: when a person or a group repeatedly harm someone. It can be; physical, calling out names or using the social network to post bad things.

Light bulbWhat parents can do;

  • Ask Children if they ever get hurt in school or called names.
  • Ask the school counselor and the teacher to help you find out more if you have any reason to think about your children being bullied.
  • Get children help through therapist, share with your school and your doctor.

 

Depression. Definition: low mood and loss of interest in fun activities. It is more common among older children/teenagers. Depressed children can be irritable or angry not sad. It is important to notice any other changes to your children mood and behaviors at home.

Light bulbWhat parents can do;

  • Talk to the school counselor, your doctor or someone in your community to help you with resources.
  • Always look for expert help.

Resources:

Make the Morning Run Smooth Strategies for Developing a Morning Routine

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As a pediatrician, I work with all children including those with disabilities. I hear how difficult it can be to get out the door in the morning. In this blog, I share tips for creating a morning routine to get out the door on time and with less stress. Most children do better when there are routines that are predictable and consistent, including children with Attention Deficit Hyperactivity Disorder and Autism Spectrum Disorders.

Learning a morning routine can be especially challenging for children with disabilities. They often need more directions, practice, and patience to learn these skills.   Each family will need to change these tips to work in their home.

Plan Ahead:backpack

  • Have your child pack his/her backpack and place it by the door at night. Make sure homework and projects are in the backpack. Creating a homework folder makes this easier.
  • When possible, pack lunches the night before.
  • Help your child pick out clothes the night before. This helps stop disagreements about what to wear.

Wake Up

  1. Start backwards. Figure out what time you need to leave.  Decide how long the morning routine will take. Give 10 to 15 minutes of extra time. That amount of time determines when to wake your child up.
  2. Pleasant wake up. Have the alarm play a favorite song or wake your child up gently with a hug and cuddle. Harsh alarms or abrupt wake ups can start the day off poorly.

Getting ready

  • Create a get ready routine: Wake Up, Get dressed, Eat breakfast, Brush teeth, Review the day and backpack, Leave for school.
    1. Get dressed first as this is often the biggest hurdle in the morning
  • Post a visual chart or checklist of each step. Laminate it or hang it in a plastic folder. Your child can use a dry erase marker to check things off when done.
    1.  Can use pictures of your child doing each step
  • If your child is more interested in music, create a playlist of songs. Each song goes with a different task in the morning routine.
  • Use a timer showing your child the time left for each step.

Getting Out the Door

  1. Use a silly sound (a wolf howl) to warn your child 5 minutes before it is time to leave.
    1. At first, you will need to use the sound and a warning “five more minutes”. Eventually just the silly sound will work.
  2. Use a different silly sound (duck quacking) for when it is time to leave.
    1. At first, you will need to use the sound and a warning “Time to go”.

Make It Funreward ribbon

  • Praise your child for completing steps in the routine. At first, the praise should be IMMEDIATE.
  • Create rewards for following the routine.  This can be a sticker chart or small prizes.
  • Your child can do a favorite activity as a reward if finish early.  This can be very motivating.
    1. No TV or tablet until your child is dressed and ready for school. If your child is ready early, he/she could watch a short clip.

Stick to It

    • Creating a new routine or habit takes 3 weeks.  Work towards the same goal for 3 weeks.
    • Once you have mastered the morning routine, create a bedtime or homework routine.

Additional Information and References:

Fair Wages

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Many workers living with a disability receive low pay from their 2 people advocating for fair wagesjobs. There is a law called the Fair Labor Standards Act or FLSA.  The FLSA helps protect workers from their jobs. Most people do not know that the FLSA has a section called 14 (c).  Section 14 (c) lets jobs pay low wages to people living with disabilities

Many people living with a disability in the United States are paid under $4 an hour.  Workers who are paid low cannot afford to pay rent.  They cannot afford to pay their bills.  They cannot afford to buy the things that they need.

Activists and lawmakers are working together to change the FLSA law by:

  • Fighting for higher pay
  • Fairness in the workplace
  • Better benefits
  • More jobs

The costs in America are going up every year to live here.  People living with disabilities have a right to fair wages

If you would like to know more about the Fair Labor Standards Act, please click below

Many people with disabilities are being paid low wages and its perfectly legal

ABA Therapy

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child pointing at a chartHello, my name is Felisha Thomas and I work as a behavior therapist in a public school.

Therapists and teachers use ABA to help work with children.  ABA stands for Applied Behavioral Analyst.  This means the science of behavior.  ABA is not just for children with autism.  ABA is used to help all children with their behaviors.

Therapists and teachers learn ABA in school.  They learn about the 3 ABCs of behavior.

  • Antecedent: what are they doing before the behavior?
  • Behavior: what are they doing?
  • Consequence: what are they doing after the behavior?

Therapists and teachers use ABA for lots of things.

Help children make better choices throughout the day.

  • Help children who are sad.
  • Help children who are mad.
  • Play with children at the playground.
  • Keep children safe.
  • Help children follow directions in class.
  • Help teach children the rules.
  • Help children learn the class lessons.

Therapists and teachers go other places outside of school to help children too.

  • We go to museums.
  • We go to zoos.
  • We go to parks.
  • We go to the pool.
  • We try to help children anytime there is a need.

Therapists and teachers are friendly.  We let children know that we are their friends who like to help.

For more information on ABA therapy, see ABA in Classroom Settings.

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