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?
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.
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.
What 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.
What 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.
What parents can do;
Ask teachers about topics that are hard for your children.
Remember that not doing well in school, can make students sad or angry.
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.
What 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.
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.
What 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.
What parents can do;
Talk to the school counselor, your doctor or someone in your community to help you with resources.
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.
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:
We were in the junk food aisle. I was not happy about this. The fruit aisle had been a total bust, as had been the cereal aisle.
With her hand hovering over a package of Twinkies, my sister Amelia turned to me and gave me a very grumpy look.
A woman pushing her shopping cart by us in the cramped Stop & Shop aisle scurried away, sensing an argument in the air.
As an adamant advocate for self-determination for people with intellectual disabilities, I was struggling with my sister’s food of choice for breakfast, debating where to draw my line in the sand – or whether I should do so at all. I chose the fruit route – and made a plea for cantaloupe.
“But I do not want cantaloupe, I want Twinkies!” she declared, pointer finger straight up, “they taste good with milk and tea.”
“But, Twinkies,” I stammered, “that’s – that’s just not breakfast food!” My counter argument came out as my hand went on my hip.
“It’s my human right and you can’t stop me,” she said loudly, her back stiffening. I recalled that Amelia was a regular attendee at her group home’s human rights meeting, in which people role played standing up for their human rights in decision-making at all levels – from self-defense to food choice.
“On the one hand,” I thought, “this human rights training is totally right on, but on the other hand, how could they let a person with pre-diabetes eat Twinkies, of all things, for breakfast?”
Agitated, my voice now met hers in decibel. “It’s my house, and my wallet, and we don’t eat Twinkies for breakfast at my house!” I stammered, attempting to impersonate a parent, now that our parents were dead.
The parental tone did nothing to further our détente. Her voice even louder now, Amelia became more adamant “They let me eat it at MY house. I went to MY human rights advocate. I eat one for breakfast with tea and milk. It is what I eat for breakfast. I WANT it for breakfast.”
Freeze frame.
This seemingly simple incident in the grocery store is actually about the foundation of modern disability policy writ small and large – the implementation of the “dignity of risk.” Coined during the de-institutionalization era by disability studies scholar Robert Perske at first used this phrase to challenge disability system workers about:
“…going overboard in their effort to protect, comfort, keep safe, take care and watch…this overprotection can…consequently prevent the retarded individual from experiencing risk that is essential for normal growth and development.” (Perske, 1972: 24)
By reflecting on the potential gain from experiencing day-to-day risk, Perske championed the need for people with intellectual disabilities to be able to take such chances as well. While I am doubtful that Perske thought much about Twinkies for breakfast, he did comment on the need for ‘prudent’ risk taking, stating:
“Knowing which chances are prudent and which are not—this is a new skill that needs to be acquired…Now we must work equally hard to help find the proper amount of risk these people have the right to take. We have learned that there can be healthy development in risk-taking and there can be crippling indignity in safety!” (Perske, 1972:24).
Perske’s commentary has informed the disability service community to think deeply about how to best support people with intellectual disabilities living and working in the community. And yet, I wonder, have we really had the conversations we need to have as service providers and advocates about the nitty gritty of the implementation of the dignity of risk – say – when it comes to Twinkies?
“Well,” I thought, “here I am, on the front line of implementing this important principle via arguing with my sister about the merits of a healthy breakfast versus the demerits of Twinkies. “Somehow,” the cynical me thought, “we’ve taken a wrong turn on this human rights stuff.” The disability rights movement supporter in me nearly passed out at this thought.
Taking a deep breath – and a new tack – I posed this question to Amelia. “OK, I understand and agree that it is your right to choose Twinkies, but will you at least ALSO have some fruit, and think about how Twinkies impact those sugar levels the doctor warned you about last week, you know, because of how you’ve been feeling sick sometimes?” As her sister and pseudo parent-figure, I felt compelled to lecture, and yet I also felt like a hypocrite, failing in my chance to effectively implement of the dignity of risk.
I was met with silence as Amelia defiantly placed three packages of Twinkies in the shopping cart. So, as many parents have likely done, I bought the Twinkies in order to avoid a scene in the grocery store. And, needless to say, Amelia had her Twinkies for breakfast the next morning, with tea and milk – and did give a bowl of cantaloupe a try.
While Amelia has since moved on from Twinkies to Count Chocula’s best, we do continue our discussion of her “sugar problem” and the importance of healthy choices, but the process is slow. I am often stumped about how to support an adult with an intellectual disability on making choices, as I believe a balance must be struck between supporting self-determination that incorporates the ‘dignity of risk’ with the need to support a person’s health “security.” Or, maybe that’s just an overprotective sister talking.
So, when I find myself struggling with Amelia over such issues as Twinkies – and more recently dating, sexuality and contraception – I look back to Perske to guide me. Recently, in looking over his seminal writing on the topic, Perske also addressed the disability service community, asking them to look within:
“Overprotection can keep people from becoming all they could become. Many of our best achievements came the hard way: We took risks, fell flat, suffered, picked ourselves up, and tried again. Sometimes we made it and sometimes we did not. Even so, we were given the chance to try.” (Perske, 1972:24)
And in reading this passage, I was able to step outside of myself. I look back at myself and see that it has taken me too long to realize that much of the learning that needs to be done is learning on MY end. While my health-focused conversations with Amelia go on, I have learned to back off and respect my sister in ways I never thought I could. And in turn, Amelia has, on occasion, surprised me in asking for melon for breakfast.
Perske, R. 1972. “The dignity of risk and the mentally retarded.” Mental Retardation 10:24-27.
Note: The name “Amelia” is a pseudonym and is used to protect the privacy of the author’s sister
Dr. Elspeth Slayter is a Fellow in the Advanced Leadership in Neurodevelopmental Disabilities Program at the Eunice Kennedy Shriver Center of the University of Massachusetts Medical School. Dr. Slayter is also an Associate Professor of Social Work at Salem State University in Salem, Massachusetts.
Throughout the month of April, we’ve heard from members of the Massachusetts Act Early state team who have shared heartfelt stories about why identifying autism and other developmental disorders matters to them.
Who We Are
Our team is made up of parents, medical professionals, educators, autism resource specialists, human services program managers, public health practitioners, university faculty and many others.
We lead an interdisciplinary, collaborative statewide effort “to educate parents and professionals about healthy childhood development, early warning signs of autism and other developmental disorders, the importance of routine developmental screening and timely early intervention whenever there is a concern.”
What We Do
Our statewide coalition works to strengthen state and community systems for the early identification and intervention of children with signs of developmental disabilities, such as autism spectrum disorders.
The coalition envisions a future that uses a family-centered model that overcomes geographic, socioeconomic, cultural, and linguistic barriers to assure equal access to developmental screening for all children in the Commonwealth. This mission and vision drives every action Mass Act Early takes to make a critical difference in the lives of children and their families.
Our current goals include:
Public outreach to increase awareness of autism spectrum and related disorders.
Training for early childhood, health care, and educational professionals.
Shortening the wait times between screening and diagnosis as well as diagnosis and intervention.
Developing culturally competent autism screening materials and training curricula for early childhood educators, community health centers and pediatric practices across Massachusetts.
How We Do It
Our web site at www.maactearly.org contains free downloadable materials about healthy developmental milestones in young children for families, early childhood professionals, and health care providers.
Most of these materials were developed by the Centers for Disease Control and Prevention (CDC). The CDC developed them for the national “Learn the Signs. Act Early” public awareness program, of which the MA Act Early initiative is the local state chapter.
Additionally, the CDC‘s online Autism Case Training (ACT) course covers identifying, diagnosing, and managing autism spectrum disorders.
There are three modules, which can be taken separately or together. They are based on real-life scenarios and include up-to-date information, illustrative videos, and pertinent references and resources.
Free continuing education credits (CME, CNE, and CEU) are available for each of the modules.
Our Priority: Cultural and Linguistic Equity in Massachusetts
The MA Act Early state team has set a priority of reducing early identification disparities for families who are from culturally, ethnically, and linguistically diverse backgrounds, particularly if their primary language is not English.
Early identification may be important to any of us. It could be due to skyrocketing prevalence rates, a beloved family member living with an autism spectrum disorder, a sense of profound professional purpose to improve the quality of life or any number of other reasons.
Whatever raises your own concerns about early identification, please join us in making a lasting difference. Positive outcomes are within our reach!
About the Author
Elaine Gabovitch, MPA serves as state team leader for the Massachusetts Act Early program and as one of 25 national ambassadors appointed by the Centers for Disease Control and Prevention (CDC) to promote the “Learn the Signs. Act Early.” public health program in Massachusetts. For more information, visit www.maactearly.org . She is also the Director of Family and Community Partnerships for the UMass Medical School-Eunice Kennedy Shriver Center, family faculty in the Shriver Center’s LEND program, and an instructor in the UMMS Department of Family Medicine & Community Health.
This week we are pleased to introduce Jason Travers PhD, BCBA-D, an Assistant Professor of Special Education at the University of Massachusetts Amherst. Jason will share his personal experience with early identification and the impact it made on his life.
My Work Begins
I began my work in autism while studying for my Bachelor’s degree in Special Education at UNLV in 2000. I had quit a construction job to return to college and the decision was taking a financial toll on me and my new wife.
There were many fliers in the hallways of the College of Education requesting candidates to help with early intensive behavior intervention in home-based programs for children with autism. I figured it would be a great way to get some experience and make a little money.
Soon I was working for and with three families which included sons with autism. It was a decision that would come to define me as a professional.
Meeting Alex
Perhaps the most influential moment was my experience with Alex and his family. Alex had recently been diagnosed with autism when his parents contacted me about starting up an intervention program.
A couple of weeks later, I arrived at their home with a few other behavior therapists and an experienced consultant. The family was desperate for help and needed support.
For several months prior to our arrival, Alex struggled to communicate with his parents and relied primarily on inappropriate behavior to get his needs met. I could tell they were a loving family, but they were also unsure of what to do to improve the situation.
Beginning Our Treatment
I was eager to begin our effort and over the next couple of days we began teaching play, communication, and other behaviors. Initially I found it very challenging as Alex refused hand over hand prompting.
The other children I had been working with had established these skills before my arrival. I was unsure what to do and so were Alex’s parents.
The consultant, however, continued with the procedures and by the morning of the second day things had changed dramatically.
Making A Breakthrough
There were six of us in a small bedroom when Alex began to respond to our spoken directions. We spread around the room and took turns asking him to “come here.” We cheered every time he went to the person who called him and he loved our cheering.
A few minutes later he completed a puzzle, played with some blocks, and said “buh” to request bubbles. Alex’s parents were overcome with tears of joy as they felt they were witnessing nothing short of a miracle.
Just two days before their son was unable to answer to his name, had never “asked” for anything, and couldn’t follow simple directions. I was amazed at the quick transformation and still get emotional whenever I think about it.
Committing To Help
I was immediately convinced that day that I would base my career around autism and began planning accordingly. I continued to teach Alex for 9 months and documented his progress before leaving to start a job as a special education teacher.
During those months, Alex began speaking to communicate, drawing and writing, playing appropriately, and went to the movies and other places in the community with his family.
Goals for the Future
This experience was a defining moment in my life and has fueled my career. While working as a special educator for students with autism, I earned my Master’s degree in special education with an emphasis on autism and developmental disabilities. Eventually I earned a PhD in special education. I now conduct research and teach courses related to behavior analysis and autism at UMass Amherst.
After 13 years, the memory of those first days with Alex remains vivid and powerful. Alex and many other children like him have inspired my professional goal: to help all families affected by autism gain access to quality services that will allow their child to achieve their full potential.
Early identification and early intensive behavior intervention is critical to this goal and the reason why I am involved with Massachusetts Act Early.
About the author
Jason Travers, PhD, BCBA-D is an assistant professor of special education at the University of Massachusetts Amherst. He researches the efficacy of technology to prevent contextually inappropriate behavior and promote early literacy skills of learners with autism. Jason also investigates the disproportionate representation of diverse children with autism.
