Caring for Your Other Children
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As your children grow and your family changes, consider the following tips::
- Devote quality time to your typically developing children; if possible, schedule some alone time on a regular basis.
- Consider the feelings a child may have toward his or her sibling with special needs, which may include guilt, embarrassment, resentment, or grief. Acknowledge these feelings—even the negative ones—and help your child through them.
- Use appropriate and straightforward language when communicating with a typically-developing child about a sibling with special needs.
- Many times, our other children want to help with their siblings with special needs, which shows how much they care. Find ways to let your other children be involved in caring for their sibling with special needs, but make sure you do not ask too much of them. Maintain balanced, healthy expectations regarding siblings serving as caregivers.
Make Special Time for Typically Developing Siblings
Caring for a child with special needs can demand an enormous amount of time and energy from parents. In addition, parents
may be distracted by their own feelings of grief or worries that they are inadequate caregivers. Other children may think
there isn’t any time left for them.
Taking just a little bit of time out of each day to devote attention to your other children allows them to feel special, too.
Take time to watch a movie, read a story, scratch a back, or simply ask about your child’s day, activities, and interests.
No matter how busy you are, is important to show your children that you are as in invested their lives as you are in the life
of their sibling with special needs. Of course, we realize that this sounds far simpler than it actually is; if there are
days when you don’t have one extra minute, give yourself a break.
Sibling Feelings
Children are just as affected by their sibling’s diagnosis as the rest of the family, and it may be difficult for them to
sort through their feelings and concerns. Discussing the diagnosis and encouraging to them share their feelings will help
them to understand that their sibling will be okay, and that they will be okay, too.
- Talk with your typically developing children about their brother’s or sister's diagnosis, including discussion of the behaviors and symptoms that are part of the diagnosis.
- Encourage their questions and listen to their concerns
- As you learn more about your child’s diagnosis, educate your children about it, too, and reassure them that they can share the information with others when they feel ready.
- Help them understand that their sibling’s diagnosis is nothing to feel ashamed about.
- Let them know that it’s no one’s fault.
- Let them know that their feelings are valid. Seek sibling support groups or "sibshops" in your area to help your children connect with other kids who have siblings with disabilities. Sibshops help kids accept disability and consider it "no big deal."
As a parent, you may find it difficult to understand or deal with some of the feelings that your typically developing child
may have toward his or her sibling with special needs, and you have your own feelings to deal with as well. Give everyone
in the family time to work through their feelings, which may be different at various points during a child’s development.
Such feelings may include embarrassment, sadness, anger, and denial. You can best address your child’s feelings by showing
patience, acknowledging and giving credibility to these feelings, and helping your children manage their feelings in an appropriate
manner. Sometimes this means simply going about your daily routine to demonstrate acceptance of your child’s feelings as normal.
Sometimes it means having a difficult conversation with your child.
You can also help by encouraging your children to invite friends into the home when they feel ready to do so. In one family,
the siblings don’t bother to tell friends about their sister, who is in a wheelchair and does not talk, before the friends
visit their house; if the friends don’t tolerate this experience well, they “aren’t worth it as friends.” The parents in this
family provide quiet support by being present to answer questions as necessary. However, this might not be the type of support
your children need; there is no singular “right” way to support your children and their friendships. For some children, talking
with friends in a casual and positive way about their sibling with special needs before the friends’ visit will offer a better
chance for those friends to prove their worthiness.
Occasionally, it may be helpful for you to simply acknowledge something your child is feeling—to voice that yes, it is a bummer
that your child with special health care needs had a "meltdown" at another birthday party, or that it is disappointing that
a holiday celebration has been cut short because of a necessary visit to the emergency room. Acknowledging such feelings (and
that you may share those feelings at times) may help a typical sibling see that her parent understands, and she may benefit
from hearing her own feelings expressed by you, her parent. It is important to be honest about your own feelings, too, and
sometimes that means expressing disappointment or frustration along with love and support. It is also important to acknowledge
the importance of your other child’s needs, even when it is not so fun.
Sometimes siblings of children with special health care needs will feel embarrassed and/or responsible for perceived slights
to their sibling, such as people staring or using terms like “retard” or “spaz.” In these situations, try to model appropriate
behavior and discuss proper responses with your children later. For example, to help a child manage his or her feelings when
someone has said something inappropriate, you might offer both an acknowledgement and a suggestion for how to handle the feelings:
“I know you are angry, but it’s not appropriate to punch Paul. He wasn’t referring to your sister when he used the word ‘retard.’
Instead, you can tell him about the Spread the Word to End the Word Campaign.
Ensure that your other child has a safe place to discuss problems, relate moments of embarrassment, and be completely open
with his or her feelings and thoughts without fear of hurting you or his or her sibling with special needs. Special time alone
with parents, extended family, or other adults may be helpful. Counseling can also be valuable. There are also support groups
and “sibling workshops” that can be great opportunities for your typically developing children, as they offer children a sense
of normalcy, solidarity, and affirmation, that can help them recognize that they are not alone. The Sibling Support Project may be a helpful resource. The Sibling Support Project is also on Facebook.
Language: Choosing the Right Words
Parents often have a difficult time explaining to their other children, especially when a child is very young, what is different
about their child with special needs. As a parent, you may try to explain a developmental disorder, terminal illness, disability,
or disease, but your child may not fully understand the information. There is no easy solution, but it is important to listen
carefully to your child’s questions, and then use simple, accurate language to explain the health issue. This will allow your
typically-developing child to gain a basic understanding of his sibling’s needs, and allow him to more easily discuss his
sibling’s health or disability in social situations. Below, we offer a few examples that may be helpful when you have to answer
your children’s questions. We’re sure that children will come up with many more questions than we can anticipate; you may
have to just wing it, but try to stay positive, and speak as simply as possible..
One of the realities of caring for children with special needs is the cost associated with their healthcare. Financial difficulties
are sometimes an unavoidable reality, but it is best to avoid telling another child you “can’t afford” an activity with friends,
a family outing, or extracurricular functions. Instead, you might suggest alternatives to expensive outings, which may be
just as much fun.
Another challenge that parents face is how to deny the requests of their other children when sibling-related health complications
arise and necessarily take precedence. For instance, it is not advisable to tell a child, “We can’t go to the water park because
it’s too difficult for your sister.” While this may be a legitimate reason for not choosing the water park as a family event,
it is important not to place the blame on your child with special needs, as it might create sibling resentment. A more appropriate
answer in the situation mentioned above might be, “We will plan an outing to the water park when your cousins come to visit,
but this weekend we’re planning a hike and a picnic in the park for the whole family.”
One family with a good sense of humor is quick to point out to the typical sibling that the child with the disability has
made certain situations easier for the family: “Your sister got us to the front of the line at the amusement park!” or “Your
brother gets us the best parking spaces!”
Siblings as Caregivers
Typically-developing children often want to assume a care-giving role with their sibling with special needs because they want
to be an active part of their sibling’s life and show that they are committed family members. Providing care for a special
needs sibling can expand a child’s empathy for others and create a feeling of connection between siblings. However, take care
that your child does not to take on too much responsibility. Young siblings may be given some care-giving responsibility if
they offer to help, but it should be clear that this is the exception rather than the rule. Express gratitude, and let your
child know that he is never alone in his efforts. Dismissing a child’s desire to help care for her sibling with special needs
can result in isolating siblings from each other. Sibling relationships are special to children with and without special needs.
Your goal as a parent is to help your typically developing child establish a healthy balance between care, responsibility,
and support.
As they get older, siblings sometimes realize that they may ultimately become responsible for the care of their sibling with
special needs. This realization can be overwhelming for both parents and siblings. As usual, the key to working through this
issue is communication. Early and gradually progressive discussions about the future are important. Make sure that your typically-developing
children understand the options, which may include someday having their sibling with special health care needs live with them,
but also includes alternatives for placement outside the home. Discussions should emphasize that there is no single, correct
answer to the complexities of caring for a sibling with special health care needs, but that the decision regarding where the
sibling with special needs will live will ultimately belongs to the typical sibling(s). Parents worry about burdening the
typical sibling with what they view as their own responsibility, but siblings often express their willingness and desire to
assume the primary caretaking responsibility when the time comes.
Siblings and parents of children with special needs are very resilient. Every family may have a different solution to a problem,
but most find a balance that works for them. We have found that the balance is not static, but changes over time, and needs
to be continuously and actively nurtured by the family and the professionals with whom they work. As in most things, keeping
open and active communication with your children will help all of them to know that they are loved and supported.
Resources
Information & Support
For Professionals
Brothers and Sisters (
)
This handout from TelAbility.org provides tips for providers and parents to help them special needs siblings.
For Parents and Patients
Sibling Support Project
A national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental,
or mental health concerns, includes Sibshops workshops for siblings.
Sibling Support on Facebook
Facebook page for the Sibling Support Project.
Allies with Families
Provides emotional support, training, and resource information for families of children with emotional, behavioral, and mental
health disabilities; also includes workshops for siblings.
Sibshops: workshops for siblings of children with special needs
A program of the Sibling Support Project.
Spread the Word to End the Word Campaign
The R-word is the word 'retarded(ed)'. A campaign toward creating more accepting attitudes, using people-first language.
Green Tree Yoga - Audio Yoga Breaks
Yoga for You is for people of all ages, shapes, sizes and abilities. Take a quick yoga break at work, school, at home, or
offer it at a meeting. Whatever you are wearing is fine. Just release some physical and mental stress as you listen and take
an easy yoga pause. Be more productive, be more focused and relaxed, and be healthier. Several are specifically for kids.
Services
Family Support Centers/Outreach
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Local Support Groups, Disability/Diag
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National Support Services, Disab/Diag
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Social & Recreational Opportunities
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