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Siblings Perspectives: Some Guidelines for Parents

Contributed by Marci Wheeler M.S.W. here.

There is little doubt that those of us raised with siblings have been influenced by that relationship. Living with a brother or sister with an autism spectrum disorder adds more significant and unique experiences to that relationship. Throughout numerous accounts of parents and siblings of children with disabilities it becomes very clear; when a child in the family has a disability, it affects the whole family. Also clear is that families and each member can be both strengthened and stressed from this situation. It is the degree of these conflicting effects that seem to vary from family to family and person to person. There are some factors that have been found to help strengthen families and minimize the stressors. This brief article is meant to arm you with important information and practical suggestions for helping and supporting siblings.

Though limited research has been done, a child’s response to growing up with a brother or sister with a disability is influenced by many factors such as age, temperament, personality, birth order, gender, parental attitudes and modeling, and informal and formal supports and resources available. Certainly parents have little control over many of these factors. However, parents do have charge of their attitudes and the examples they set. Research by Debra Lobato found that siblings describing their own experiences consistently mentioned their parents’ reactions, acceptance and adjustment as the most significant influence on their experience of having a brother or sister with a disability (Lobato, 1990).

It is also important to note from Lobato’s research that a mother’s mental and physical health is probably the most important factor in predicting sibling adjustment regardless of the presence of disability in the family (Lobato, 1990). Positive outcomes that siblings frequently mention are learning patience, tolerance, and compassion and opportunities to handle difficult situations. These opportunities also taught them confidence for handling other difficult challenges. Research by Susan McHale and colleagues found that siblings without disabilities viewed their relationship with their brother or sister with autism as positive when: 1) they had an understanding of the siblings disability; 2) they had well developed coping abilities; and 3) they experienced positive responses from parents and peers toward the sibling with autism (McHale et al., 1986).

There are negative experiences of having a sibling with an autism spectrum disorder that should be acknowledged and addressed. Anxiety, anger, jealousy, embarrassment, loss, and loneliness are all emotions that children will likely experience. Because of the nature of autism spectrum disorders there are barriers to the sibling bond that can cause additional stress as a result; communication and play can be difficult between siblings when one has an autism spectrum disorder. Often the sibling without the disability is asked to assume or may on their own feel obligated to assume the role of caretaker. It is best to be proactive in addressing these issues. Siblings are members of the family that need information, reassurance and coping strategies just as parents do.

Each family is unique. There are various family structures such as single parents, multi-generational households, and households with other significant stressors including more than one member with a disability. Each family has its own beliefs, values, and needs. Regardless of family circumstances, the suggestions for parents discussed here should be viewed as supportive strategies that can be considered to assist siblings in coping with having a brother or sister with an autism spectrum disorder.

Twelve Important Needs of Siblings and Tips to Address These Needs

  1. Siblings need communication that is open, honest, developmentally appropriate, and ongoing. Parents may need to deal with their own thoughts and feelings before they can effectively share information with siblings. Children may show their stress through their withdrawal or through inappropriate behaviors. Parents should be alert to the need to initiate communication with their son/daughter. Siblings may be reluctant to ask questions due to not knowing what to ask or out of fear of hurting the parent. While doing research on siblings, Sandra Harris found that developmentally appropriate information can buffer the negative effects of a potentially stressful event (Harris, 1994).
  2. Siblings need developmentally appropriate and ongoing information about their siblings’ autism spectrum disorder. Anxiety is most frequently the result of lack of information. Without information about a siblings’ disability, younger children may worry about catching the disability and/or if they caused it. The young child will only be able to understand specific traits that they can see like the fact that the sibling does not talk or likes to line up their toys. School aged children need to know if the autism will get worse, and what will happen to their brother or sister. Adolescents are anxious about the future responsibility and impact of the disability on their future family.
  3. Siblings need parental attention that is consistent, individualized, and celebrates their uniqueness. Many families make a major effort to praise and reward the child with the disability for each step of progress. This same effort should be considered for the siblings even if an accomplishment is somewhat “expected.” Self esteem is tied to this positive recognition by parents. Remember to celebrate everyone’s achievements as special.
  4. Siblings need time with a parent that is specifically for them. Schedule special time with the sibling on a regular basis. Time with the sibling can be done in various ways such as a 10 minute activity before bed each night or a longer period of ½ hour to an hour 3-4 times a week. The important thing is to have some specific times with a parent that siblings can count on having just for them.
  5. Siblings need to learn skills of interaction with their brother or sister with an autism spectrum disorder. Sandra Harris & Beth Glasberg (2003) offer guidelines for teaching siblings necessary play skills to interact successfully with their brother or sister with an autism spectrum disorder. It is important to go slow and generously praise the sibling for his or her efforts. Toys and activities should be chosen that are age appropriate, hold both children’s interest and require interaction. The sibling needs to be taught to give instructions as well as prompts and praise to their brother or sister (Harris & Glasberg, 2003).
  6. Siblings need to be able to have some choice about how involved they are with their brother or sister with an autism spectrum disorder. Be reasonable in your expectations of siblings. Most siblings are given responsibility for their brother or sister with a disability at one time or another. Show siblings you respect their need for private time and space away from the child with the disability. Make every effort to use respite services, community recreational programs, and other available supports so that you are not overly dependent on the sibling.
  7. Siblings need to feel that they and their belongings are safe from their brother or sister with autism. Some children with an autism spectrum disorder can be destructive and hard to redirect. They can also be quick to push, bite, or engage in other challenging behaviors with the sibling as a target. Siblings must be taught how to respond in these situations. Generally this would include asking a parent for help in handling the situation. Parents should make every effort to allow siblings a safe space for important items and a safe retreat from their siblings’ aggressive behaviors. Thomas Powell and Peggy Gallagher offer ideas on teaching basic behavior skills to siblings (Powell & Gallagher, 1993).
  8. Siblings need to feel that their brother or sister is being treated as “normal” as possible. Explain differential treatment and expectations that apply to the child with a disability. As they mature, siblings can better understand and accept the modifications and allowances made for the brother or sister with a disability. For various reasons, parents sometimes do not expect their child with an autism spectrum disorder to have chores and other responsibilities around the house. Attempts should be made to make each child’s responsibilities and privileges consistent and dependent on ability. Be careful not to underestimate the ability of the child with the autism spectrum disorder.
  9. Siblings need time to work through their feelings with patience, understanding, and guidance from their parent(s) and or a professional, if appropriate. Listen and acknowledge you hear what is being said. Validate the sibling’s feelings both positive and negative as normal and acceptable. Repeat back what you have heard the sibling say and check for accuracy. Sharing your positive and negative emotions appropriately is also important. Remember parents are important models of behavior. Help siblings learn ways to cope with and manage their emotions.
  10. Siblings need opportunities to experience a “normal” family life and activities. If needed, draw on resources in the community both informal and formal. Some families are uncomfortable in asking for help. For the sake of everyone in the family, it is important to find and use resources available such as respite care services and other community programs for persons with disabilities and their families. Most families would be overwhelmed without some breaks from the ongoing demands of caring for children with a disability. Siblings and parents need opportunities for activities where the focus of energy is not on the child with special needs.
  11. Siblings need opportunities to feel that they are not alone and that others understand and share some of the same experiences. Parents should recognize the need for siblings to know that there are others who are growing up in similar family situations with a brother or sister with a disability. Opportunities to meet other siblings and/or read about other siblings are very valuable for most of these children. Some children might benefit from attending a sibling support group or a sibling event where they can talk about feelings and feel accepted by others who share a common understanding while also having opportunities for fun.
  12. Siblings need to learn strategies for dealing with questions and comments from peers and others in the community. Parents should help prepare siblings for possible reactions from others toward their brother or sister with a disability. Make sure the sibling has facts about autism spectrum disorders. Discuss solutions to possible situations. They may even benefit from carrying their own information card for friends which they can hand out as needed.

Siblings have a unique bond with each other which is usually life long. Having a sibling with a disability impacts this bond and will impact each sibling differently. The information presented here highlights some of the limited research and the most significant factors influencing a positive experience for siblings of a child with a disability. As a parent of a child with an autism spectrum disorder you can directly influence and support positive relationships for siblings. Just as you have learned to be proactive for the sake of yourself and your child(ren) with an autism spectrum disorder, siblings need you to be proactive in helping them, too.

References

Harris, S.L. (1994). Siblings of children with autism: A guide for families. Bethesda, MD: Woodbine House.

Harris, S.L. & Glasberg, B.A. (2003). Siblings of children with autism: A guide for families. (2nd ed.) Bethesda, MD: 2003.

Lobato, D.J. (1990). Brothers. Sisters, and special needs; Information and activities for helping young siblings of children with chronic illnesses and developmental disabilities. Baltimore, MD: Paul Brookes Publishing Co.

McHale, S.M., Sloan, J., & Simeonsson, R.J. (1986). Sibling relationships of children with autistic, mentally retarded, and nonhandicapped brothers and sisters. Journal of Autism and Developmental Disorders, 23, 665-674.

Powell, T.H. & Gallagher, P.A. (1993). Bothers & sisters: A special part of exceptional families. (2nd ed.) Baltimore, MD: Paul Brookes Publishing Co.

Wheeler, M. J. (2006). Siblings perspectives: Some guidelines for parents. Reporter 11(2), 13-15.


Wheeler, M. (2006). Siblings perspectives: Some guidelines for parents. The Reporter, 11(2), 13-15.

5 Sensory Summer at Home Activities for Kiddos with Autism

Summer days can be sunny and magical, but they can also leave parents wondering how to keep their kids from climbing the walls. 

That’s why having a few go-to warm weather activities can make an otherwise stir crazy stay-at-home afternoon a little more enjoyable. We have found that using daily visual schedules helps ease our kids’ anxiety.

This specific schedule is available here

This type of home schedule can help maintain routine and predictability for your child.

There are endless possibilities for at home activities, but these are some of our household favorites!

1. At Home Obstacle Course

There are endless options when creating your own obstacle course. Consider activities you already have, that your child finds exciting, and add a few new items to keep it entertaining.

Components of an at home course:

Take advantage of any stable trees in your backyard and add a few pieces of 4×4 or wall climbing pieces to make climbing steps along the trunk of it, or attach a rope to a branch that can be used to climb up the base as well!

Easy climbing grips for a wall or tree!
You can make a tree climb as complex or simple as you want! Kiddos will still enjoy conquering a mammoth tree 🙂

Take a portable slide that you might already have and add it to the “course.” Considering it’s summer weather, putting the slide into a kiddie pool makes a fun splash!

Our go-to slide here

Another fun component of an obstacle course would be something to crawl through! A tunnel would be a fun addition.

Consider the toys you already have around the house, write out the sequence of events in the course, and get racing!

2. Sensory Sandbox

Creating a sensory box can be an indoor or outdoor experience! If you are interested in a traditional sandbox outdoors, here are some fun additions to keep it exciting:

Available Here
Melissa & Doug Sand Toys
Sandbox vehicles

If you are interested in a mess-free indoor sensory box, fellow blogger 3 Dinosaurs offers a great water bead alternative!

Add water beads of any colors and toys of your interest!

For instance, add dump truck toys or shovels for scooping!

Consider Playmobile toys and houses as other creative additions to an otherwise typical house-play!

3. Self Made Water Park

If available, corner off a section of your yard and deem it the “Waterpark”! Everything sounds better with an alluring name 😉

Items to consider including:

a slip n slide:

https://amzn.to/2WmmaNZ
Available here

a sprinkler of your choosing!

a water table with boats, mermaids, and torpedos!

squirt guns!

a kiddie pool with slide!

4. Chef In Training!

Create a summer recipe book with your child’s favorite meals or baked goods, consisting of at least 5 items that include pictures of the dish and the ingredients!

Have your child brain storm the meals and help with compiling the images into the recipe book/scrap book with you. That way, when you need an interactive activity together, they can pick out their favorite summer snacks/meals and help make them with you!

Fellow blogger Thirty Hand Made Days has some great images and details of ones she has created!

This activity helps teach valuable skills such as following multiple step instructions and team work!

5. Make A Home Garden

The wonders of new life mystify all of us, and it is especially exciting to witness it in the eyes of children!

There are many ways to begin a home garden with your kiddos. Some fun and mostly fool proof items to plant in a garden are herbs and potted plants! Some go-to favorites of ours are the following:

  • Tomato plants- they are exorbitantly fruitful and often produce en masse! So you won’t have to worry about “nothing showing up”! Make it a weekly outing to the garden to pick a basket full for the week’s meals!
  • Basil- A generally easy plant to maintain in the home or outside! The magnificent smell provides a sensory experience your child won’t want to miss! They also produce quicker the more they are plucked, so don’t hesitate to have your child pick a few leaves off each week!
  • Bromelaide Plant- the Bromelaide plant has many varieties, and is a simple indoor plant that can survive even unattended conditions (even though we don’t recommend that! We just know it might be easy to forget them 😉 ). Usually only needing watering about twice per week, this can be a source of beauty, nurturing, and responsibility for your child.

There are limitless options with plants and herbs for your young one to water and nurture, both indoor and outdoor! Learning about nature and adoring its resilience and beauty is fun usually for kids aged pre-school and up! Feel free to comment below with any plants your youngster loves to care for, or other go-to summer activities!

Employee Spotlight: Faith Martino

“Choose a job you love, and you will never have to work a day in your life.”

-Confucius

Along with making Spectrum Autism Services more magical than it would be without her, Faith impacts the lives of others with profound generosity.

Faith is a Registered Behavior Technician who has a deep passion for aiding children on the spectrum to reach their optimal potential. She thrives as a caregiver and has a unique ability to connect with children and help them grow as they reach their goals.

Faith continuously helps those around her and brings a positive perspective to any conversation. She also enjoys working out, lifting weights, road trips, sings like a Disney princess and mostly finds ways to make those around her smile.

Faith has a professional background in customer service management, coordinates weekly social groups and assists in the development of curriculum that is used to target social skills in a group setting.

She is currently studying at the University of Mary Washington earning her degree in communication. Faith also leads a team of volunteers for the children’s ministry at her church.

Employee Spotlight: Emily Taylor

This month we are spotlighting a wonderful team member at Spectrum Autism Services!

Emily Taylor has always had a passion for working with children and helping them reach their potential. In 2016, she received her Bachelor’s Degree in Psychology from James Madison University. She then began her career in the field of Autism in the school setting by providing both classroom-based and one-on-one services at a Special Education, Applied Behavior Analysis based school in Maryland.

In 2018, she moved to Fredericksburg where she became a part of the Spectrum family as a Registered Behavior Technician.

It wasn’t until joining Spectrum that Emily truly realized her calling for working in the field of ABA. She is currently enrolled at The University of Southern Maine in pursuit of a Master’s in Educational Psychology and Applied Behavior Analysis.

Emily is extremely excited to continue her education and to inspire others to find passion in working in the field of Autism! We are so lucky to have her on our staff.

Thank you for all that you do, Emily!

Teacher Appreciation Week: A Thank You List

This week we want to celebrate the amazing impact teachers (including paraprofessionals, school speech pathologists, and school occupational therapists) can make on our kiddos lives, especially those who work with children with Autism Spectrum Disorder.

Children with Autism have varying characteristics that, as parents and therapists, can transform us, challenge us, and teach us. We understand the often unrealized desire to put our own needs on the back-burner to dive head first in caring for those with atypical needs. We hope that as you do one of the most important professions, teaching and preparing our youth for social settings and their futures, that you read our thank you list to re-boost your end of the year energy. And hopefully, you will understand a little bit more the incalculable gratitude we have for you that is oh-so-difficult to show on an everyday basis.

One of many fun sensory activities used by educators and therapists!
  • We want to thank the teachers who come in early, leave late, and often have to spend their own money to have adequate supplies, therapeutic/sensory materials, and even allergy friendly foods for their students.
  • We want to thank the teachers in our kiddos lives who take the extra five minutes at the end of an exhausting workday to give our children that extra interaction.
  • We want to thank the teachers who redirect our children with ASD in the classroom with loving grace instead of frustration.
  • We want to thank the teachers who look at our children with ASD and feel an outpouring of empathy that is visible and palpable in your daily interactions with them.
  • We want to thank the teachers that find something in common with our children with ASD and capitalize on it by generating discussions, activities, or feelings of belonging to those that don’t always fit in.
  • We want to thank the teachers who create lessons plans with our differentiated learners in mind, and do so with excitement to help them learn in a way not typical to the traditional classroom.
  • We want to thank the teachers who make it a vital importance to implement IEP accommodations, and do so out of a heartfelt desire to make an often uncomfortable child that much more comfortable in a social setting.
  • We want to thank the teachers that take our children with ASD out of a stressful situation and into a hallway or place of safety while a meltdown occurs, so that our child will not be taunted by peers for an uncontrollable event.
  • We want to thank the teachers who treat the parents of children with ASD with amicable fellowship, and are not irritated by our sometimes fretful emails, but instead take the time to reassure us of situations.
  • We want to thank the teachers of those with ASD for making an impact on our child’s lives in a way we sometimes cannot. It is said that it takes a village to raise a child, and the truth in that is some days you have as much affect on the lives of our children as we do.
  • We want to thank the teachers who remove our children from harmful situations, both social and towards themselves, with the care of a loving guardian.
  • We want to thank the teachers who show up, day in day out, tired or well rested, stressed or relaxed, happy or emotional, and STILL find a way to have an uplifting, impactful, and compassionate school day. Your effort will never go unnoticed, even if our thanks some days goes unsaid.
From the bottom of our hearts and the depths of our souls, we thank you.

Research Finds Children with ASD Cave Less to Peer Pressure

As parents with kids who have autism, we learn early on that a lot of kids with ASD aren’t as in tune with social cues as their neurotypical counterparts. This study hints at an upside to their independent nature.

Dr Kristine Krug of the University of Oxford had a focus group of 155 children aged 6-14. They were asked to play a game where they were told they were pretending to be spaceship pilots. Then, they were given “a turning cylinder with moving black-and-white dots and were instructed that the dots represented black holes. In order to accurately navigate their spaceship around the holes, they needed to determine its direction of spin, which was made difficult by optical illusions.”

This specific game was chosen because research has previously shown that children can be as good at identifying optical illusions as adults.

While playing their game, a chosen person involved in the study – which for half the children was an adult and for the other half a child their age – told them which way the hole was turning.

These advisors often got it wrong.

Dr. Krug’s study showed that “among the 125 neurotypical [children without Autism] children, an unusually clear age pattern emerged. Children under 12 exercised their own judgment, ignoring the advice they received, irrespective of the source. From 12 onwards, neurotypical children were strongly influenced by advice, be it from an adult or peer, even when they were told something contradicting what they could see. Wrong advice both slowed responses and led to incorrect decisions.”

But the results for children with autism had a shocking twist.

“[Those with Autism] who had been matched for age and IQ with the neurotypical sample, were only very slightly influenced by advice, and this didn’t change as they aged. Once past age 12, they did better on the test than neurotypical participants because they were not swayed by the bad advice.”

Dr. Krug’s study indicates that the independence of those with autism who can spot errors in other people’s advice is beneficial to society.

She also highlights that her study fills in the wholes of a previous study dating back to the 1950s, where evidence demonstrated that adults allow others to persuade them even if there is “something in direct contradiction to what their eyes can see.”

Dr. Krug’s work also found that the shift of neurotypical children taking the advice of others occurs sharply at the age of 12.

While Dr. Krug’s study parallels to the fact that children with Autism have a delayed understanding of social cues, it also gives their nonobservance for some social cues a silver lining.

https://www.iflscience.com/brain/children-with-autism-may-not-cave-to-peer-pressure-like-kids-without-disorder-study-finds/

The Zones of Regulation: A Cognitive Behavioral Approach

The Social Thinking® initiative creates differentiated strategies and treatments to increase cognitive development and social skills. Often applied to those with ASD, the Zones of Regulation curriculum is rooted in cognitive behavioral therapy strategies for emotional and sensory self-management. These tools can be applied from the age of four to adolescents and through adulthood to assist in conquering interpersonal social skills.

Available here

The curriculum’s learning activities are designed to help those who struggle with social skills recognize when they are in different states of mind, or “zones”, with each of four zones represented by a different color.

In the activities supplied in the book and often implemented by our ABA therapists, clients also learn how to use strategies or tools to stay in a specific zone or move from one to another. They learn and develop calming techniques, cognitive strategies, and sensory supports to provide them with a toolbox of methods to use to move between zones.

With the goal of assisting those with ASD to better understand why emotions matter and how to self-regulate, the lessons set out to teach clients the following skills:

  • How to read others’ facial expressions and recognize a broader range of emotions
  • Gain perspective about how others see and react to their behavior
  • Develop insight into events that trigger their less regulated states and why they feel the way that they do
  • Understand when and how to use tools and problem-solving skills

The curriculum includes 18 lessons with detailed questions and follow ups, worksheets, other handouts, and visuals to display and share. These can be photocopied from this book or printed from the accompanying USB.

The Red Zone describes extremely heightened states of alertness and intense emotions. A person may be elated, euphoric, or experiencing anger, rage, explosive behavior, devastation, or terror when in the Red Zone.

The Yellow Zone describes a heightened state of alertness and elevated emotions; however, individuals have more control when they are in the Yellow Zone compared to the Red Zone. A person may be experiencing stress, frustration, anxiety, excitement, silliness, the wiggles, or nervousness when in the Yellow Zone. Many individuals with ASD believe the Red Zone is the only option when their emotions begin to heighten, but the Yellow Zone is the in-between, an option to catch themselves before they escalate too far.

The Green Zone is used to describe a calm state of alertness. A person may be described as happy, focused, content, or ready to learn when in the Green Zone. This is the zone where optimal learning occurs and where we would like to come back to after experiencing emotions in another zone.

The Blue Zone is used to describe low states of alertness and down feelings such as when one feels sad, tired, sick, or bored.

The zones themselves each offer a range of emotions to accompany many situations, environmental or otherwise, however, it is entirely plausible that an individual may be in more than one zone at any given time. This could occur when someone is too sick (Blue Zone) and may also feel frustrated (Yellow Zone) that they cannot go to a birthday party. Understanding what these zones mean and how they relate to each other is the optimal understanding of the four zones.

It is important to teach that all of the zones are natural and okay to experience, but the idea of the curriculum focuses on teaching individuals how to recognize and manage the zone they are in based on their situation and the people around them.

Learn more about the Zones of Regulation in the article, All the Zones are OK! Tips for Managing the Zones You’re In.