Supporting siblings of children with special needs

Even the name “special needs” gives a clue about what it can be like to be a sibling of a child with a chronic condition. When a sibling has special needs, from a child’s perspective, that sibling can seem to be regarded as more special than me!

Whether parents are caring for a child with a physical or mental condition, the amount of attention required almost inevitably consumes some of the time the siblings might otherwise access. There are more visits to doctors and other professionals, hospitalizations with one parent staying overnight, more tests, and sometimes even therapists coming into the family’s home for monitoring or care giving. If the primary issue is mental health that takes attention, too! Sometimes even routine health care for the sibling falls behind.

When the special needs child is acutely ill, or a time-sensitive need or crisis occurs, everything planned for the family that day can go out the window. There is hardly an adult who would not resent always being second fiddle, much less a child with less maturity.

There are more subtle reasons for potential resentment that come from having a special sibling. Although federal regulations now mandate accessibility, often the kinds of outings typical families enjoy are too much hassle to arrange when there is equipment to haul, there are medicines to refrigerate, or there are toileting requirements such as for catheter care. Travel team soccer is out. So these events just don’t happen for the family as a whole.

Even with greater community awareness of different special needs conditions such as autism, stigma still exists. Siblings already are embarrassed about behaviors of typically developing children who pick their noses, laugh too loudly, or slurp their milkshake! It is not hard to see how being in public with a sibling who is shouting, rocking, or having tantrums could be mortifying. Children often choose playdates at someone else’s house to avoid having to explain or deal with their special sibling. This creates a kind of uneven relationship with peers and also deprives parents from being involved.

Siblings of children with special needs are often asked to help out. They have to answer the door when the parent is suctioning, babysit that child or siblings, feed them, or even provide direct care for the child’s medical needs. Household chores that would have been shared with a typically developing child may fall on the sibling.

Finances often add another constraint on the opportunities for a sibling of a child with special needs. Even really good insurance does not cover all the extra costs associated with chronic conditions. Babysitters may need extra skills; vehicles may need lifts or extra space; the home may need structural changes. Paying all these costs means other things don’t fit the budget. Even for a family of means, for the sibling this may result in public school rather than an elite private school, no music lessons, or no overnight camp. For families of lesser means, even life’s basics are hard to afford.

As children get older, they begin to worry about their future options. Will there be enough money for college? Will I have to live at home to help out? What if my parents die and I am the only one left to care for my special sibling? How will I ever get a date or get married?

While all of these factors are stresses, studies have shown being a sibling of a special needs child promotes greater compassion and maturity. Being of real help in the family and to a beloved sibling gives meaning to a child’s life that may be hard to come by during more typical circumstances of growing up. Certainly you have seen in your practice how siblings of special needs children disproportionately aim for careers in health care, psychology, social work, or other helping professions. This may even have been a factor in your own life.

But some siblings of children with special needs become depressed, develop hardened resentment, or take a defiant, acting-out stance. How can you support siblings so that this is not the outcome?

The first step is to ask about their well-being at every visit for the child with special needs. When parents respond with a balanced expression of the positive and the problematic, you can be reassured. If they seem immune to the difficulties the sibling must be experiencing or interpret jealous or attention-seeking behaviors as being solely “bad,” then more discussion or even referral for counseling may be needed. A parent who ordinarily might have understood may not when overburdened or depressed. The siblings with greater maturity and compassion were likely raised by parents who made sure that the point of view and positive attributes of every child in the family were voiced, and that each had opportunities to contribute to the family in meaningful ways as well as express themselves.

“Strong empathic talk” about the sibling’s feelings has been shown to be one of the best ways to build all positive sibling relationships starting in infancy. Acknowledging jealousy and providing individual attention come next. When things aren’t “fair” (which they often cannot be), token fairness helps. For the sake of the sibling, a child with special needs should still have “chores” (such as pulling sheets out of the dryer) and consequences for misbehavior (such as time out), whether the child understands or not.

At their own health supervision visit, I ask siblings about their relationship with the child with special needs, what is fun for them together and what is the hardest part about living with them. The aim is to assess their attitudes and also give them permission to complain. I almost always do this interview with the parents present, giving them a chance to hear those views (although private time may be needed as well). It often is hard for parents and the child himself or herself to express negative feelings because the special needs situation was no one’s fault and everyone has to work hard to be optimistic and to cope. You can then model a sympathetic ear plus assist in coming up with solutions, when possible. The interventions I suggest are often “tokens” to address the family dynamics rather than solutions to the problem. For example, a teen sibling of a child with autism under my care showed depression. Although for fun he played video games with his brother with autism, the hardest part was the lack of an age-appropriate social life. He had to make breakfast and get the special needs sibling off to school every morning as well as care for him after school while their single mother worked. We discussed this, and their mother determined to pay the teen for child care plus loosen her restrictions on his bedtime so that he could go out with friends.

Simply allowing the sibling expression that it can be hard is helpful. Many times stress is denied. To open up discussion, ask such questions as, “How is it having friends over?” or “Do you get enough time with your mom, just you and her?” or “Are there things you miss out on because you have a sister with special needs?”. These same topics are relevant for the parents themselves, too. Protecting the sibling’s privacy during playdates, having 10 minutes daily alone with the sibling to talk or play cards, or setting some family savings goals for the missing privileges are possible solutions that parents could implement. I suggest regular family meetings at home to ensure that these discussions occur and that the solutions are maintained or refined over time.

There are services available for some special needs conditions that are helpful in supporting siblings. Wraparound services may include respite care to allow family vacations, babysitters with needed skills, or payment for summer camp for children with special needs. Summer camps specific to siblings of children with special needs exist as well.

When free services are not available or finances are tight, you can encourage families to think outside the box. Maybe they can trade child care with another family with a child with special needs – each taking both kids for weekly breaks for the other family. Both condition-specific and general parent support groups often are helpful for coming up with ideas and making friendships that can lead to this kind of exchange.

When parents do not have a sitter they trust to manage care for the child with special needs, I often suggest getting a less-skilled (and less expensive) sitter (an 11-year old-works) to mind the child, but then the parent can stay in the house or yard to allow for individual time with the sibling without having to worry. (This is a good tip for time alone for spouses, too!)

The long-term questions that older siblings will have are best addressed by making a plan with a financial adviser. Organizations such as the Arc of the United States (www.thearc.org) and lawyers specializing in disabilities can provide this kind of advice. A trust fund, an up-to-date will, and a written plan for care giving long term are important to reduce worries parents have and can be communicated to the siblings when the time is right.

Dr. Howard is assistant professor of pediatrics at the Johns Hopkins University, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to Frontline.

Even the name “special needs” gives a clue about what it can be like to be a sibling of a child with a chronic condition. When a sibling has special needs, from a child’s perspective, that sibling can seem to be regarded as more special than me!

Whether parents are caring for a child with a physical or mental condition, the amount of attention required almost inevitably consumes some of the time the siblings might otherwise access. There are more visits to doctors and other professionals, hospitalizations with one parent staying overnight, more tests, and sometimes even therapists coming into the family’s home for monitoring or care giving. If the primary issue is mental health that takes attention, too! Sometimes even routine health care for the sibling falls behind.

When the special needs child is acutely ill, or a time-sensitive need or crisis occurs, everything planned for the family that day can go out the window. There is hardly an adult who would not resent always being second fiddle, much less a child with less maturity.

There are more subtle reasons for potential resentment that come from having a special sibling. Although federal regulations now mandate accessibility, often the kinds of outings typical families enjoy are too much hassle to arrange when there is equipment to haul, there are medicines to refrigerate, or there are toileting requirements such as for catheter care. Travel team soccer is out. So these events just don’t happen for the family as a whole.

Even with greater community awareness of different special needs conditions such as autism, stigma still exists. Siblings already are embarrassed about behaviors of typically developing children who pick their noses, laugh too loudly, or slurp their milkshake! It is not hard to see how being in public with a sibling who is shouting, rocking, or having tantrums could be mortifying. Children often choose playdates at someone else’s house to avoid having to explain or deal with their special sibling. This creates a kind of uneven relationship with peers and also deprives parents from being involved.

Siblings of children with special needs are often asked to help out. They have to answer the door when the parent is suctioning, babysit that child or siblings, feed them, or even provide direct care for the child’s medical needs. Household chores that would have been shared with a typically developing child may fall on the sibling.

Finances often add another constraint on the opportunities for a sibling of a child with special needs. Even really good insurance does not cover all the extra costs associated with chronic conditions. Babysitters may need extra skills; vehicles may need lifts or extra space; the home may need structural changes. Paying all these costs means other things don’t fit the budget. Even for a family of means, for the sibling this may result in public school rather than an elite private school, no music lessons, or no overnight camp. For families of lesser means, even life’s basics are hard to afford.

As children get older, they begin to worry about their future options. Will there be enough money for college? Will I have to live at home to help out? What if my parents die and I am the only one left to care for my special sibling? How will I ever get a date or get married?

While all of these factors are stresses, studies have shown being a sibling of a special needs child promotes greater compassion and maturity. Being of real help in the family and to a beloved sibling gives meaning to a child’s life that may be hard to come by during more typical circumstances of growing up. Certainly you have seen in your practice how siblings of special needs children disproportionately aim for careers in health care, psychology, social work, or other helping professions. This may even have been a factor in your own life.

But some siblings of children with special needs become depressed, develop hardened resentment, or take a defiant, acting-out stance. How can you support siblings so that this is not the outcome?

The first step is to ask about their well-being at every visit for the child with special needs. When parents respond with a balanced expression of the positive and the problematic, you can be reassured. If they seem immune to the difficulties the sibling must be experiencing or interpret jealous or attention-seeking behaviors as being solely “bad,” then more discussion or even referral for counseling may be needed. A parent who ordinarily might have understood may not when overburdened or depressed. The siblings with greater maturity and compassion were likely raised by parents who made sure that the point of view and positive attributes of every child in the family were voiced, and that each had opportunities to contribute to the family in meaningful ways as well as express themselves.

“Strong empathic talk” about the sibling’s feelings has been shown to be one of the best ways to build all positive sibling relationships starting in infancy. Acknowledging jealousy and providing individual attention come next. When things aren’t “fair” (which they often cannot be), token fairness helps. For the sake of the sibling, a child with special needs should still have “chores” (such as pulling sheets out of the dryer) and consequences for misbehavior (such as time out), whether the child understands or not.

At their own health supervision visit, I ask siblings about their relationship with the child with special needs, what is fun for them together and what is the hardest part about living with them. The aim is to assess their attitudes and also give them permission to complain. I almost always do this interview with the parents present, giving them a chance to hear those views (although private time may be needed as well). It often is hard for parents and the child himself or herself to express negative feelings because the special needs situation was no one’s fault and everyone has to work hard to be optimistic and to cope. You can then model a sympathetic ear plus assist in coming up with solutions, when possible. The interventions I suggest are often “tokens” to address the family dynamics rather than solutions to the problem. For example, a teen sibling of a child with autism under my care showed depression. Although for fun he played video games with his brother with autism, the hardest part was the lack of an age-appropriate social life. He had to make breakfast and get the special needs sibling off to school every morning as well as care for him after school while their single mother worked. We discussed this, and their mother determined to pay the teen for child care plus loosen her restrictions on his bedtime so that he could go out with friends.

Simply allowing the sibling expression that it can be hard is helpful. Many times stress is denied. To open up discussion, ask such questions as, “How is it having friends over?” or “Do you get enough time with your mom, just you and her?” or “Are there things you miss out on because you have a sister with special needs?”. These same topics are relevant for the parents themselves, too. Protecting the sibling’s privacy during playdates, having 10 minutes daily alone with the sibling to talk or play cards, or setting some family savings goals for the missing privileges are possible solutions that parents could implement. I suggest regular family meetings at home to ensure that these discussions occur and that the solutions are maintained or refined over time.

There are services available for some special needs conditions that are helpful in supporting siblings. Wraparound services may include respite care to allow family vacations, babysitters with needed skills, or payment for summer camp for children with special needs. Summer camps specific to siblings of children with special needs exist as well.

When free services are not available or finances are tight, you can encourage families to think outside the box. Maybe they can trade child care with another family with a child with special needs – each taking both kids for weekly breaks for the other family. Both condition-specific and general parent support groups often are helpful for coming up with ideas and making friendships that can lead to this kind of exchange.

When parents do not have a sitter they trust to manage care for the child with special needs, I often suggest getting a less-skilled (and less expensive) sitter (an 11-year old-works) to mind the child, but then the parent can stay in the house or yard to allow for individual time with the sibling without having to worry. (This is a good tip for time alone for spouses, too!)

The long-term questions that older siblings will have are best addressed by making a plan with a financial adviser. Organizations such as the Arc of the United States (www.thearc.org) and lawyers specializing in disabilities can provide this kind of advice. A trust fund, an up-to-date will, and a written plan for care giving long term are important to reduce worries parents have and can be communicated to the siblings when the time is right.

Dr. Howard is assistant professor of pediatrics at the Johns Hopkins University, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to Frontline.

Even the name “special needs” gives a clue about what it can be like to be a sibling of a child with a chronic condition. When a sibling has special needs, from a child’s perspective, that sibling can seem to be regarded as more special than me!

Whether parents are caring for a child with a physical or mental condition, the amount of attention required almost inevitably consumes some of the time the siblings might otherwise access. There are more visits to doctors and other professionals, hospitalizations with one parent staying overnight, more tests, and sometimes even therapists coming into the family’s home for monitoring or care giving. If the primary issue is mental health that takes attention, too! Sometimes even routine health care for the sibling falls behind.

When the special needs child is acutely ill, or a time-sensitive need or crisis occurs, everything planned for the family that day can go out the window. There is hardly an adult who would not resent always being second fiddle, much less a child with less maturity.

There are more subtle reasons for potential resentment that come from having a special sibling. Although federal regulations now mandate accessibility, often the kinds of outings typical families enjoy are too much hassle to arrange when there is equipment to haul, there are medicines to refrigerate, or there are toileting requirements such as for catheter care. Travel team soccer is out. So these events just don’t happen for the family as a whole.

Even with greater community awareness of different special needs conditions such as autism, stigma still exists. Siblings already are embarrassed about behaviors of typically developing children who pick their noses, laugh too loudly, or slurp their milkshake! It is not hard to see how being in public with a sibling who is shouting, rocking, or having tantrums could be mortifying. Children often choose playdates at someone else’s house to avoid having to explain or deal with their special sibling. This creates a kind of uneven relationship with peers and also deprives parents from being involved.

Siblings of children with special needs are often asked to help out. They have to answer the door when the parent is suctioning, babysit that child or siblings, feed them, or even provide direct care for the child’s medical needs. Household chores that would have been shared with a typically developing child may fall on the sibling.

Finances often add another constraint on the opportunities for a sibling of a child with special needs. Even really good insurance does not cover all the extra costs associated with chronic conditions. Babysitters may need extra skills; vehicles may need lifts or extra space; the home may need structural changes. Paying all these costs means other things don’t fit the budget. Even for a family of means, for the sibling this may result in public school rather than an elite private school, no music lessons, or no overnight camp. For families of lesser means, even life’s basics are hard to afford.

As children get older, they begin to worry about their future options. Will there be enough money for college? Will I have to live at home to help out? What if my parents die and I am the only one left to care for my special sibling? How will I ever get a date or get married?

While all of these factors are stresses, studies have shown being a sibling of a special needs child promotes greater compassion and maturity. Being of real help in the family and to a beloved sibling gives meaning to a child’s life that may be hard to come by during more typical circumstances of growing up. Certainly you have seen in your practice how siblings of special needs children disproportionately aim for careers in health care, psychology, social work, or other helping professions. This may even have been a factor in your own life.

But some siblings of children with special needs become depressed, develop hardened resentment, or take a defiant, acting-out stance. How can you support siblings so that this is not the outcome?

The first step is to ask about their well-being at every visit for the child with special needs. When parents respond with a balanced expression of the positive and the problematic, you can be reassured. If they seem immune to the difficulties the sibling must be experiencing or interpret jealous or attention-seeking behaviors as being solely “bad,” then more discussion or even referral for counseling may be needed. A parent who ordinarily might have understood may not when overburdened or depressed. The siblings with greater maturity and compassion were likely raised by parents who made sure that the point of view and positive attributes of every child in the family were voiced, and that each had opportunities to contribute to the family in meaningful ways as well as express themselves.

“Strong empathic talk” about the sibling’s feelings has been shown to be one of the best ways to build all positive sibling relationships starting in infancy. Acknowledging jealousy and providing individual attention come next. When things aren’t “fair” (which they often cannot be), token fairness helps. For the sake of the sibling, a child with special needs should still have “chores” (such as pulling sheets out of the dryer) and consequences for misbehavior (such as time out), whether the child understands or not.

At their own health supervision visit, I ask siblings about their relationship with the child with special needs, what is fun for them together and what is the hardest part about living with them. The aim is to assess their attitudes and also give them permission to complain. I almost always do this interview with the parents present, giving them a chance to hear those views (although private time may be needed as well). It often is hard for parents and the child himself or herself to express negative feelings because the special needs situation was no one’s fault and everyone has to work hard to be optimistic and to cope. You can then model a sympathetic ear plus assist in coming up with solutions, when possible. The interventions I suggest are often “tokens” to address the family dynamics rather than solutions to the problem. For example, a teen sibling of a child with autism under my care showed depression. Although for fun he played video games with his brother with autism, the hardest part was the lack of an age-appropriate social life. He had to make breakfast and get the special needs sibling off to school every morning as well as care for him after school while their single mother worked. We discussed this, and their mother determined to pay the teen for child care plus loosen her restrictions on his bedtime so that he could go out with friends.

Simply allowing the sibling expression that it can be hard is helpful. Many times stress is denied. To open up discussion, ask such questions as, “How is it having friends over?” or “Do you get enough time with your mom, just you and her?” or “Are there things you miss out on because you have a sister with special needs?”. These same topics are relevant for the parents themselves, too. Protecting the sibling’s privacy during playdates, having 10 minutes daily alone with the sibling to talk or play cards, or setting some family savings goals for the missing privileges are possible solutions that parents could implement. I suggest regular family meetings at home to ensure that these discussions occur and that the solutions are maintained or refined over time.

There are services available for some special needs conditions that are helpful in supporting siblings. Wraparound services may include respite care to allow family vacations, babysitters with needed skills, or payment for summer camp for children with special needs. Summer camps specific to siblings of children with special needs exist as well.

When free services are not available or finances are tight, you can encourage families to think outside the box. Maybe they can trade child care with another family with a child with special needs – each taking both kids for weekly breaks for the other family. Both condition-specific and general parent support groups often are helpful for coming up with ideas and making friendships that can lead to this kind of exchange.

When parents do not have a sitter they trust to manage care for the child with special needs, I often suggest getting a less-skilled (and less expensive) sitter (an 11-year old-works) to mind the child, but then the parent can stay in the house or yard to allow for individual time with the sibling without having to worry. (This is a good tip for time alone for spouses, too!)

The long-term questions that older siblings will have are best addressed by making a plan with a financial adviser. Organizations such as the Arc of the United States (www.thearc.org) and lawyers specializing in disabilities can provide this kind of advice. A trust fund, an up-to-date will, and a written plan for care giving long term are important to reduce worries parents have and can be communicated to the siblings when the time is right.

Dr. Howard is assistant professor of pediatrics at the Johns Hopkins University, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to Frontline.