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.
Dr. Barbara J. Howard
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.