Tag: siblings of disabled children

Don’t let siblings lose their childhood

Don’t let siblings lose their childhood

Don’t let siblings lose their childhood
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Siblings suffer when a brother’s or sister’s chronically severe behavior overwhelms the family.  Usually parents are too stressed and exhausted to give them attention.  Their needs are overlooked because their brother or sister demands so much.  ‘Normal’ siblings can be very negatively affected and start to have trouble in school, troubled behavior of their own, and emotional scars that affect them in the future.

It’s easy to see how siblings are affected, but there’s little information on how to raise well-adjusted siblings in a home with a troubled child.  On the one hand, they need to be kids with plenty of love, support, and opportunity.  On the other hand, siblings also need to be part of a family team when there’s a crisis.  They can’t avoid being involved!  I found it necessary to coach the siblings on precisely what to do, with the promise they could be a kid afterwards.  I found it necessary to normalize our peculiar family situation to them.  We were a ‘normal’ family for families like us.

The Siblings’ Bill of Rights

  1. The right to our own life outside the family
  2. The right to have our own concerns acknowledged
  3. The right not to be “perfect” to compensate for our troubled sister or brother
  4. The right to be treated as fairly as our troubled sister or brother
  5. The right to a safe environment
  6. The right to have our own friends and spend time with them
  7. The right to helpful information about our troubled sibling
  8. The right to be supported in our choice of future, and to pursue our future without continually caring for our troubled brother or sister
  9. The right to one-on-one time with our parents-caregivers
  10. The right to have our achievements and milestones celebrated
  11. The right to have our needs and opinions included in our sibling’s treatment plans.

From the 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.  http://www.siblingsupport.org/

Here’s my advice upfront:  Find ample time to put the siblings first.  You cannot let your difficult child rob them of their childhood, their need to grow and be social and do well in school.  Your other children will be part of their brother’s or sister’s life forever, and they will need to be strong and supportive when the troubled one needs help as an adult.  To the parent or caregiver, this is for you:

“Most siblings of people with psychiatric disorders find that mental illness in a brother or sister is a tragic event that changes everyone’s life.  Strange, unpredictable behaviors in a loved one can be devastating, and your anxiety can be high as you struggle with each episode of illness and worry about the future.  It seems impossible at first, but most siblings find that over time they do gain the knowledge and skills to cope with mental illness effectively.  They do have strengths they never knew they had, and they can meet situations they never even anticipated.”  — National Alliance on Mental Illness (NAMI) July 3, 2001  www.nami.org

Sibling quotes – I once asked several young people about their experience living with a brother or sister with a mental disorder, and this is what they said:

“I escaped, I left in my mind.  I wouldn’t let anything bother me.  I dropped compassion and pretended nothing happened, I tried to forget about my family.”  Her sister was diagnosed with schizoaffective disorder at age 15.

“All I did was tried to get away when she blew out.  Then I got jealous of all the time my parents spent on her and not the rest of us.  Now I just let them handle it and I take my younger sisters away to protect them but they still hear the noise so I help them feel safe, but it’s hard sometimes.”  Her sister was diagnosed with bipolar disorder at age 9.

“To me, it was a death.  The brother I knew and who was so much like me in so many ways had died, and I didn’t know who this person was who was living in my house anymore.”  His brother was diagnosed with schizophrenia at age 18.

Share these messages with your other children, which might help them learn to live with or accept the behavioral disorder of their troubled brother or sister:

  • “You cannot cure a mental disorder for a sibling.
  • No one is to blame for the illness.
  • No one knows the future; your sibling’s symptoms may get worse or they may improve, regardless of your efforts.
  • If you feel extreme resentment, you are giving too much.
  • It is as hard for the sibling to accept the disorder as it is for you.
  • Separate the person from the disorder.
  • It is not OK for you to be neglected.  You have emotional needs and wants, too.  The needs of the ill person do not always come first
  • The illness of a family member is nothing to be ashamed of.
  • You may have to revise your expectations of your sibling.  They may never be ‘normal’ but it’s OK.
  • Acknowledge the remarkable courage your sibling may show when dealing with a mental disorder.  Have compassion, they suffer and face a difficult life.
  • Strange behavior is a symptom of the disorder.  Don’t take it personally.
  • Don’t be afraid to ask your sibling if he or she is thinking about hurting him or herself.  Suicide is real.
  • If you can’t care for yourself, you can’t care for another.
  • It is important to have boundaries and to set clear limits.  You should expect your sibling to show respect for others.
  • It is natural to experience many and confusing emotions such as grief, guilt, fear, anger, sadness, hurt, confusion, and more.  You, not the ill person, are responsible for your own feelings.
  • You are not alone.  Sharing your thoughts and feelings in a support group has been helpful and enlightening for many.
  • Eventually you may see the silver lining in the storm clouds: your own increased awareness, sensitivity, receptivity, compassion, and maturity.  You may become less judgmental and self-centered, a better person.”

Excerpted from “Coping Tips for Siblings and Adult Children of Persons with Mental Illness.”  NAMI, 2001, www.nami.org