Opinion, Parenting

When Your Child With Special Needs is Banned From A Relative's Home

What would it take for you to ban a relative from your home?  What type of behavior would be too much? What would it take for you to ban a young child, 4 years old or under, from your home? What if that child had obvious difficulties with eating, sleeping, toileting, speaking and understanding speech?  Would that make you more or less tolerant?

This is not an isolated occurrence 

The discussion group Autism With a Side of Fries posted a question last week from a parent whose 4 year old child was recently banned from her grandparents’ home: “How do I handle this?”

Within 24 hours, there were over 200 responses to that question.  It turns out that many children are excluded from their relatives’ homes because of behaviors related to their disabilities.  Even more children are excluded because they are ignored or relatives do not make accommodations for accessibility.  I was surprised at the large number of parents who shared their stories of anger and heartbreak.

It happened to me and it could happen to you

I know exactly how heartbreaking the situation can be, because it happened to my family, too.

It was a Sunday morning in December 2004, the same week that we received a 10 page diagnostic report from a research hospital detailing the nature of our 3 year old son’s disability with a grim prognosis.  A close family member called on behalf of another relative to explain that we were permanently uninvited from that relative’s home for several reasons:

1. We did not socialize enough with our hosts because we were tag-team parenting our son all the time. 2. When we did socialize, we were distracted. 3. In spite of watching him all the time, we were unable to prevent our son from running up and down stairs and flipping light switches. 4. We could not get our son to sit and eat a meal with the family. 5. Our son was constipated and clogged the toilet. 6. Our son would not settle down to go to sleep until 11:30pm. 7. Our son was up again at 6am. 8. Our host was worried that our son might break something. (Nothing was actually broken because we were watching him.)

It was all true.  We should have stayed at a hotel, which was our original plan. We knew that we were difficult houseguests, as we tried to explain beforehand.  But my husband assured me that his family’s emotional support would be unconditional.

This is how it feels to be disowned

There were more phone calls through Sunday morning into the afternoon.  The truths degenerated into false assumptions and accusations about our allegedly poor parenting skills, which the close family member echoed verbatim from the offended relative.  My husband said, “I feel like my family just disowned me.”

My son has rights too!

Every homeowner has the right to make the rules for permitted behavior in his or her home. But guess what? Our son has rights, too.

1. He has the right to feel safe.  My husband and I will always protect him and re-direct him when he puts himself in danger.  We will also protect him from verbal or other types of abuse. 2. He has the right to be treated with dignity and respect.  I will devote my life to seeking out people who are capable of that.  I will demonstrate my appreciation for kindness.  I will not use my time or energy to appease people who are incapable of seeing his humanity. 3. He has the right to be included.  If there is unwillingness to accommodate him, then my husband and I will find a place where he will be included. 4. He has the right to learn social skills and life skills at his own comprehension level.  Sometimes we have to try a new situation and push his limits to expand his horizons, which can be uncomfortable in the short term but rewarding in the long term. 5. He has the right to participate in and enjoy community and family life. He has the right to be accepted.  He has the right to love and be loved.

Doing our part

My husband and I recognize that we have the responsibility to help our son become a productive citizen and a thoughtful guest.  With years of practice, our son now understands that sometimes people like to keep their upstairs rooms private and most people do not like to have lights switched on and off.  We’ve found ways for him to be helpful and learn to do chores.  We taught him how to sit for a meal and feed himself, how to use the toilet and clean himself, how to fall asleep or at least rest quietly in bed.  We’ve taught him how to initiate a conversation and act as a host.  We did all of this without the support of extended family.

Find support where you can get it

I withheld identities because my husband only has a few adult relatives in the USA, and they did not give permission for their identities to be revealed.  I do not believe in keeping incidents like this one a secret, because secrecy only serves to perpetuate a culture of exclusion, discrimination and even verbal abuse.

When a family is in crisis, as mine obviously was in 2004, family support and outside support can help to resolve the crisis more quickly and help the family acquire necessary coping skills. There are plenty of helpful alternatives to the hurtful comments so often delivered to families of children with special needs.

I think it’s better to know someone’s true character rather than be deceived by false kindness.  I think it’s better to know the difference between conditional and unconditional love.  It’s better, even though it hurts.  The reward is a crazy, intense, unreasonable, roller-coaster kind of love that outshines everything else on Earth.