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Karen Wang
BY Karen Wang
6,864 views

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.

Karen Wang

Written on January 23, 2014 by:

Karen Wang is a Friendship Circle parent. You may have seen her sneaking into the volunteer lounge for ice cream or being pushed into the cheese pit by laughing children. She is a contributing author to the anthology "My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids With Disabilities"
  • Linda Q

    Amen, a thousand Amens.

  • AuntSue

    REALLY!?!!?! They were upset because you spent most of your time watching over your son, and not visiting with them!?!??!? So sorry you have intolerant relatives. They wouldn’t have liked my little ones, either, and mine didn’t have the many challenges your son struggles with. Quite frankly, any three year old on a bad day could have behaved like your son. It is their loss. Drops of Awesome to you and your husband for your attentive parenting, and knowing that your son is more important than your relatives.

  • Simon Maynard

    I have 2 grandkids so far on the spectrum one with Aspergers and one with an Autism diagnosis, I would no more ban them from my home than I would FLY!! Maybe it helps that I also have Aspergers, and I love them. Yes, they have their challenges, and I was scared the first time my Aspie granddaughter stayed with me for a few days without her Mum,because I thought she might not like me, but every time I see them I get to know, and love them more. I also live in a small country town and we go to the pub for dinner, and if my grandson gets wound up if the meal is late and starts crashing and rolling on the floor, they just smile at him. They know he has his challenges, but he’s my family they don’t exclude, in fact they often come and chat when its not too busy. I can’t IMAGINE grandparents excluding a child from their home. Yes, it can be a bit more work, but if you get involved with them you don’t see the work. I have a lovely drawing on m study door that I’m reluctant to clean off to post a stick on blackboard to (so that next time they come they can draw on the doors on the blackboard. I’m going to miss that drawing so I’m savouring it for a while before I destroy it. The blackboard I have is too high up for even nearly 4 year olds, so I will give m grandkids a low one! Disabled or not, the are my family and I love them.

  • Thomas Offal

    Preemptively banning your son for, frankly, behaving like a cranky three year old is absolutely uncalled for. Just plain wrong, no matter how you look at it. Your son (and your family) is 100% better off not having to deal with kin who are, frankly, ridiculously inflexible. Small children make messes. It’s what they DO. Particularly given that your kid was a toddler at the time (I’m personally acquainted with PLENTY of NT toddlers who behaved MUCH worse).

    But I’ve also seen the other side of it — when it’s the *family* of the kid with the disability (rather than the actions of the kid him/herself) that results in relatives choosing to distance themselves. My sister has a little boy with autism (my nephew K, diagnosed at 18 mos) who is nearly 11. Sis, BIL and K are rarely invited to participate in family activities because K has spent the past six years dictating exactly how everybody else should manage noise levels/serve particular food/banish their pets/etc if they wanted the honor of K gracing Grandma’s birthday party with his presence… which everybody cheerfully did for 2+ years, only for them to cancel at the very last minute 75% of the time. (Let me tell you how much fun it is to arrange EVERYTHING to accommodate K, whom we love and desperately want to feel part of the family to not show up. Yet again). While I understand that everything is overwhelming when your kid with a disability is first diagnosed, expecting everybody to cater to your kid’s needs over everybody else’s (aunts who are 80, cousins with severe allergies to peanuts, an extended family that has always enjoyed playing piano and singing together, etc) indefinitely.

    Sis does not return phone calls or reciprocate dinner invitations or host family events. Relationships are reciprocal and insisting her and K’s life is a million times harder than everybody else’s while flat-out refusing to reciprocate gets old after, oooh, 5 or 6 years. When everybody else spends YEARS going to great lengths to ensure your kid will be able to participate in a family event, cancelling at the last second MOST of the time and then complaining you feel excluded and your kid feels unwanted? Ditto. Having a child who, for reasons that clearly aren’t his fault, goad heretofore calm, easygoing and generally tolerant cousins into violence in the span of 19 unsupervised visits gets pretty old, pretty fast too. Ditto for allowing said child to 1) loudly critique anybody who ventures to play the piano (we like to play/sing by ear and aren’t aiming for Carnegie Hall), 2) bites his tongue only to insist upon giving the 9-yo cousin a note-by-note critique of “House at Pooh Corner” and then playing it “properly” for her (and everybody else) immediately afterwards and 3) yell at the toddler who dares to randomly bang on the piano keys. Sis got EVERYBODY in the whole family to arrange holidays around her kid for 6+ years (no musical instruments, no fish because he can’t stand the smell of it, no other kids under 3 because his delicate little ears cannot possibly handle their cries, so babies were banned from Xmas) and DID NOT SHOW UP 75% of the time. We were all pretty cheerful about it for YEARS*.

    Now? Fewer accommodations, not so cheerfully made. And she, BIL and K feel excluded (somewhat justifiably — but, well, 6+ years is a long time).

    • shsc82

      Sounds like your sister is an asshole raising an asshole, who happens to have autism.

  • Chantelle Le Platrier

    I findings disgusting! I’m 24, have no children and have very little experience with children that have learning disabilities, but even I can see how appalling your husband’s family where.
    At the end of the day, your child is just as much a member of the family as any of them. And I’m sure like any other child, he has a beautiful personality to be enjoyed by everyone and add to the familys dynamics. Why don’t they want to get to know him? They just see his disability.
    Also… What young child, or any aged child, are you not worried about them breaking things.
    This whole thing is grade A baloney!
    All in all.. It might be hard, but it’s A few days or a few hours where they might be making a few concessions. Is that so much to ask?
    Anyway, I love seeing my family, but it always gets to the point where I secretly can’t wait until they leave.
    This has really annoyed me. I can’t believe there are still people like this in the world!

  • shsc82

    I seem to be missing the part of this where you cut the people off for not accepting your son?

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  • kara

    Your son does have all those rights, it would have benefited every one Mrs. Wang if you and your husbands family had come to an an understanding of your child’s real abilities and his difficulties. when relatives do no know the facts about a child’s health they make the only judgement available with the information they have.

    Knowing something and understanding it is step 1. Acceptance of that knowledge is step 2. Only after family has a bare level of acceptance will they believe they need to adjust their home and rules for your child. Any requests for changes on your sons behalf will only sound like outrageous demands being forced on them in their most personal space their own home, by other relatives who think they have they right to tell them how to be and think in one place they should most be able to live as themselves.

    This is the number one reason I almost never visit friends or family at their homes everyone wants to tell you how to behave ( It’s there HOUSE) I don’t mind cat’s everywhere, dirty dishes or a loud t.v. but I mind tasteless jokes, sexist relatives and uhggg male chauvist who never stop talking about everything they think they know, and if I don’t listen attentively their wives get all pissy.

    This is actually a very complex issue it seem to me some people only want to invite people over to expose them to their rules!

    However I think you may be better served by understanding this time instead of expecting to be understood in this circumstance. It’s not ok to use family events as teaching aide for your child with out asking the hosts if it works for them. It’s your job to get your son his therapy, your husband’s family, home and yard are not just background for your son’s life. I am a mother of an autistic child she is very important to me yet I do no EXPECT friends family or strangers to be ok if I stop and have an interpersonal skills encounter with her at a wedding/birthday party/thanksgiving and believe I’m personally entitled to have everyone else’s support and approval and understanding if I did that.

    When people gather together for holidays/events that is why they came not to be witness to medical/social/emotional adjustments for a relatives child. I think you are in denial about how disruptive your child’s behavior was at the family home, a child running all over a house flipping on and off lights for the entire time was NOT OK.
    Your life as an autistic parent will become 100% easier once you develop empathy for other people, you don’t have to throw your son under the bus to acknowledge other people needs and rights are as valid for them as they are for your child. It does not have to be your son vs the world but if you chose to frame it that way you will make enemies EVERYWHERE.

    You and your husband will become them, that family that expect everyone else’s world to revolve around your special needs child’s needs, who must always be included, no matter what or else they are oppressing your son.

    Sigh ….You will lose the good will of those people who do care and will help while other people who want to keep their routines and habits will observe your behavior call it selfish and do everything they can to make you sound entitled and unreasonable so they can do as they please with out being labeled hateful or bigoted.

    Call your husband’s side of the family up, apologize tell them you under estimated the effort of managing your sons behavior. Explain you thought you could go and enjoy it together as a family. Once you assure family that they are as important to you as your son then they will be open to your struggles as a parents.
    Attempting to justify your behavior instead of apologizing for it is the issue from what I read.

    You have burnt a bridge, now it is time to build a boat don’t throw your family over board for your son it’s not necessary. I know you two must feel so betrayed and misunderstood your selves you will need to move past it because you will need your family because of your situation.
    God Bless and Good Luck
    p.s run around the house once ( your house) with your son for me
    🙂

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  • AntiAunt

    We work. Our 20 year old Autistic nephew cannot spend the night with us.

    He must have every light in the house on all night. He obsessively blows his nose all night, loudly. He goes into the bathroom all night long, flushing again and again and again. By morning the tissue is gone, as is the liquid soup. *IF* we manage to fall asleep, he sneaks outside at 2-3 am and swings on our wooden swing until he smashes it to splinters and ruins the concrete that supported it’s legs. All the while hooting like a silverback gorilla. All of these actions cause our two small dogs to barking constantly. When confronted about destroying my $300 swing, which was a birthday gift from Hubby-he replied “you know I break things”.

    One more time-we work. We don’t feel like sacrificing our weekends for a visit we don’t enjoy. He torments our pets and expects me to wait on him hand and foot, while ignoring my spouse. He goes on and on about movies, many of which I haven’t watched, nor intend to. We like to boat, he does not.

    We may sound selfish, but really-we have lives too. His mother is dead, and his father, after multiple heart surgeries, continues to smoke. I think my mother who is 80, expects him to live with us when his dad doesn’t survive his next heart attack. We are in our late 50s, early 60s. We will NOT spend the rest of our life housing him. If my brother has made other arrangements, I have not heard of them.

    He does not work. He cannot make a sandwich or shop for groceries. Money means nothing to him. He has never crosses a multiple lane street. I cant imagine him ever driving a car. Left to my discretion, he will live in group home when his father passes away.

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