Category: Family

Children’s Mental Health Week (CMHW)  May 1-7, 2022

This year’s theme is Action Changes Things. One way to advocate for children’s mental health is by lighting up green in support of Children’s Mental Health Week this year.  Parent/Professional Advocacy League has a toolkit for people to use. Toolkit materials are free. Posters can be downloaded.  Some towns and cities will have CMHW public lightings.

Since 2002, the Governor of Massachusetts, has issued an official proclamation for Children’s Mental Health Week. Some Massachusetts  mayors issue proclamations, too. Children’s Mental Health Week is dedicated to increasing public awareness about the triumphs and challenges in children’s mental health.  It emphasizes the importance of family and youth involvement in children’s mental health.

In Massachusetts, Children’s Mental Health Week is sponsored by the Department of Mental Health and the Massachusetts Behavioral Health Partnership (MBHP), a Beacon Health Options company.

Here are some Children’s Mental Health resources that may be helpful. 

Children’s Mental Health Campaign (CMHC) has six highly reputable partner organizations: 

Children’s Behavioral Health Initiative (CBHI) – Helps MassHealth children with behavioral, emotional, and mental health needs.  Families can get integrated behavioral health services and a comprehensive, community-based system of care.

     Find a CBHI Provider 

Massachusetts Department of Mental Health (DMH) HandHold – DMH has a collection of resources that you can try at home today and organizations that we know can help.

Massachusetts Behavioral Health Partnership (MBHP) – MBHP is here to provide you or your loved one with a full range of services to help with medical, mental health, and substance use disorder conditions.

National Alliance on Mental Illness (NAMI) Massachusetts Resources for Children and Teens – Includes family support programs. 

Children’s mental health is important every week of the year. 

Celebrating Holidays During COVID-19

This holiday season will be different for most of us.  Here are some resources to help families cope with the challenges that COVID-19 brings to friends and families.  Practicing safe social distancing and limiting gathering sizes is important.  Practicing safety measures such as mask wearing and hand washing can reduce the risk of spreading COVID-19.

Many families and groups of friends are planning on holding virtual parties and get togethers.  Zoom, FaceTime, Google Duo, Skype, Facebook Messenger, and Snapchat are some options. Scheduling a get together works best so that people can all be together virtually at the same time.  You can send invitations.

Popular Science has some suggestions for hosting a virtual party or get together.

Holiday Resources:

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

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.

Make bedtime a fun routine

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

  • 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

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:

Do you need help at home?

a person helping an older personAs a future public health worker, I want to learn more about programs that help disabled people. One of them is Adult Foster Care.

Who is eligible?

  • A person with a disability
  • Must be 16 years of age or older.
  • Can not live alone
  • Must need daily assistance with one or more activities of daily living for example: bathing, dressing or eating.
  • Must be approved by a doctor.

Do you have to pay?

NO!
The caregiver will receive tax-free money.
For more information visit Massachusetts Council for Adult Foster Care.

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.

Long Term Planning for Children with Disabilities

Parent holding a child
Parent holding a child

As the parent of a young man with special needs, I have long thought about for his future when I am no longer here to care for him. How do I make sure that his wishes for how he wants to live his life are respected? This is a concern for all parents of children with disabilities who will not be able to live on their own without help.
A will and special needs trust are needed to preserve any benefits the person with disabilities receives. Parents should contact a lawyer who is an expert in estate planning to write both the will and the trust.
A Letter of Intent is a letter that shows your vision for your child’s life when you are no longer here. As the person who knows your child best, it is very important that the parent(s) of a child with disabilities write this letter. It not a legal document, but it should be kept with your will, trust, and other important papers. The letter will guide the person(s) who will be caring for your child when you are gone. It will include your child’s likes, dislikes, hopes, and dreams. This letter should be written with as much help as possible from your child – it is his/her life! It should include the following:

Caregivers
• Choose carefully.
• Choose more than one person in case the first person can’t or won’t care for your child when the time comes.
• If possible, honor your child’s choice.
• Love isn’t always enough, make sure the person you choose can give your child the love and the care he/she needs.
• Name caregivers choices in your will

Medical
• Current medical providers
• Current medication – what is given, how it is given, and for what reason
• Medications that have not worked or have caused problems
• Allergies
• Relevant medical records and evaluations should be attached

Family and Friends
• Names and contact information of the important people in your child’s life
• Describe these people; who they are and what they mean to your child
• Share memories your child shared with these people and favorite interests and activities they share.

Social
• Favorite sports/activities
• Teams on which he/she is a member
• Camps or vacation locations he/she enjoys
• Spending money – how much every week to spend as he/she wishes

Education
• Educational history
• Academic skill levels
• Daily living skill levels
• Special interests and skills
• Child’s educational/job training goals
• Plans for future education/job training
• Behavioral plan

Employment
• Job history with job description(s)
• Skills and interests
• Job training history
• Type of work your child likes
• Level and kind of support needed

Home
• Where does your child live now?
• Does your child want to live with a certain friend or family member?
• How about a group home?
• What is needed to make the home safe and comfortable for your child?

Other information
• Funeral and burial/cremation wishes
• Religious/spiritual beliefs and practices
• Any other information you think future caregivers need to know about your child

Plan now, review yearly, and make changes to the plan as needed.

Here are some websites that have more helpful information:

www.fcsn.org
https://www.disabilityinfo.org
https://www.thearc.org