MaryAnn Shaw, M.Ed., CBIS
Caregivers, nurses and therapists are frequently needed to supplement parent care, and many children with significant needs receive extra services regularly, in and out of the home. The needs of children with complex disabilities are usually addressed in school with IEPs, 504 plans or health plans.
Siblings of children with serious disabilities usually do not have the same plans, but they often have special needs too. Sometimes, siblings fall into the role of caregiver for a brother or sister who needs extra help and attention. They may be needed to fill the gaps when a parent or other caregiver is not available, or they may take it upon themselves to be their sibling’s protector.
For children who are medically fragile, a common cold can result in complications that require hospitalization. The fear that families have for a medically fragile child is similar to what many people have felt during the COVID‑19 pandemic. Constant vigilance and worry for a medically fragile child is often a reality for the other children in the family as well as parents.
The problem behaviors of some children with disabilities can be disruptive to the entire family and can have ramifications for siblings that might include added stress, less quiet time for work and less time with parents. Here are some ideas, with contributions from parents, siblings and psychologists, for supporting this often-overlooked student population.
What You Should Know
Families with a child who has a significant disability usually do not have the same amount of available time and flexibility as most families. Sometimes, just the events that occur before breakfast—whether daily care routines, medical concerns or unexpected meltdowns—are equivalent to challenges that other families might experience in a whole day!
The care of a child with complex medical needs can include hours devoted to special feeding, medication preparation and administration, practicing therapies and daily personal care that exceeds that of a typical infant or toddler. This can leave less time for parents to attend to homework and extracurricular activities, and less time to solve those everyday problems that arise with all children.
For some families, behavioral meltdowns eat up time and emotional reserves for both parents and siblings and can prevent any other work or discussion from taking place for an entire day or evening.
Sometimes, when children don’t understand why a loved one has a disability, or don’t know what will happen to them as a result, their imaginations take over and they create stories to make sense of the situation. This can lead to fear and anxiety or cause a sibling to develop a strong personal need to protect their brother or sister.
What Teachers Can Do
You may not even realize that you have a student in your class who has a sibling with a disability. Consider asking leading questions at the start of the year or distributing index cards and asking students to write about their families or anything they think you should know about them. This may be the only notification you receive about the family situation of some of your students. Remember that when a child is unsure of the safety of a sibling, it can be very difficult for learning to take place.
Watch for signs that your student may need extra support from you. It may not always be easy for him or her to remind you each time something happens that interferes with school work. Look for changes in demeanor, withdrawal from class activities, reduced participation, failure to turn in work or a change in the quality of work. Give yourself a written reminder if a student has a sibling with complex needs.
Supporting siblings of children with disabilities can be challenging at times. Their need for support might happen more frequently than expected, or at inopportune times, like the end of the marking period or during school-wide testing. Consulting and collaborating with the student’s other teachers can be beneficial. It might also be helpful to consider that the child and their family might be in the midst of a serious health or behavioral event with a sibling that overshadows school work.
Consider your homework assignments carefully. Ideally, homework should be a review of the work done in class rather than new or challenging material. What you think will take minutes may actually take hours for some, and not all children have the same parent availability.
What Administrators Can Do
Advocate for the students in general education whose siblings receive special education services. Remember to have a broad view of the diversity of special education and consider that parents and siblings of your students needing special education may have their own unique needs. Talk with your students who have siblings with complex needs and be sure your staff is aware of each family’s situation.
Examine your school’s criteria for excused absences for siblings of children with complex medical needs. Often doctor and therapy appointments are lengthy and out of town. Childcare for siblings may not be an option, so parents may need to take them along.
Consider professional development to help teachers understand the demands on parents of children with complex health and behavioral needs and include information on how to support parents and siblings.
What Parents Can Do
Take time for a date night or time away with friends so you can de-stress. (This suggestion came from a sibling who said it helps the whole family.) Accept the fact that you are not superhuman and that there is no such thing as a perfect parent. Understand that fair doesn’t mean that everyone gets the same; it means that everyone gets what they need.
Every child should occasionally feel that he or she is a VIP! Grandparents may be good at helping with this. Try to plan occasional individual time with a special person for each of your children.
Because children are egocentric, they may blame themselves for a sibling’s disability and grow up believing this. Children should be carefully informed of the reality of the situation with a sibling at various developmental stages, using language and information that is sensitive and appropriate to their age and cognitive ability.
Recognize that children may worry excessively about their siblings, even when they don’t outwardly show their emotions. Every child is different and processes and internalizes things in their own way. So it is critical for each child to have a chance to express their feelings, fantasies and beliefs in a non-pressured way. Therapeutic intervention may be helpful for some children.
What Siblings Can Do
I had the distinct pleasure of interviewing a few siblings of children with disabilities in preparing for this blog. I came away with some great insights and suggestions for other siblings. Here are some of their thoughts:
Understand it is inevitable that sometimes your sibling will get sick and so will you. It is not always a catastrophe.
Find one friend who is understanding and whom you can vent to sometimes. Take advantage of adults you feel comfortable with to talk about challenges you are facing, or just to talk. This might be a teacher, school nurse, guidance counselor, aunt, uncle, etc. Having an animal can help with stress. Lots of people can imagine the benefits of having a dog or cat, but really, even watching and caring for fish can be relaxing and comforting!
Remember to get out when you can and when you have parent permission—go to a friend’s house, go shopping or just go outside to get fresh air. Take part in some extracurricular activity. It might be a sport, book club, hobby, scouting, music or art. Do something that makes you feel happy and fulfilled.
Because of their unique experiences, siblings of children with disabilities often develop important strengths and have great insight into the feelings and needs of their brothers or sisters. They are frequently our best teachers when it comes to knowing how to communicate with and support their loved ones. When we are attuned to their special needs, listen to their words and afford them the adaptations and time they may need, we can support and nurture them as they grow into strong and compassionate adults.