Signs of Progress: Honesty About Children with Disabilities

I was taking a walk down a country road near my home when I saw a bright yellow "Children at Play" sign. Carefully written above the letters in deep black marker was the word "Autistic."

When I was growing up, I remember a family of deaf children who lived on my street. Near their house was a big yellow sign that said "Deaf Child Area." It was necessary that drivers know the children there would not hear their approach or the honk of a horn.

I thought back to that sign and how I had felt seeing it as a child. I don't remember playing with those kids. I'm quite sure that they went to different schools, had different friends, didn't mix with the neighborhood kids. Maybe they felt communication would be difficult or awkward. The sign always struck me as a kind of quarantine, setting the family apart. It stigmatized them in my young eyes.

Yesterday, as I walked past the bright yellow sandwich board sign set on the side of the road, I thought about what that mother must have felt as she wrote the word "autistic." She had fears for her children's safety, I imagined, and maybe she simply wanted people to understand if her children acted differently or didn't react to passersby. But there was a kind of un-nameable pride in those words. The added word seemed to say, "These are my children. I'm comfortable with it and you should be too."

Maybe I felt this way because I knew the mother who had put up the signs. She has three boys, two of them autistic. She seems to have boundless energy and has devoted her life to her sons. Her world is circumscribed by their abilities, her marriage has been impacted and her social life is limited. I imagine that in the quiet of her home and the privacy of her bed there have been many bleak moments, mixed with triumph and pride.

The sign also made me realize just how far we have come as a society. There was a time when we swept these kinds of disabilities under the rug. They were shameful, stigmatizing and segregating.

I am proud of this mother for choosing to call a spade a spade. I have a hearing impaired daughter. While this disability is not anywhere as limiting as the level of autism my friend's boys have, I have learned long ago you cannot measure people's pain. We all ache equally for our children when the diagnosis is delivered. There are no blue ribbons for first prize in the "biggest martyr" category. Anyone with a child who has different abilities is my hero.

I've raised my daughter to be very matter-of-fact about her hearing. "I wear hearing aids," she will explain, and she has chosen hot pink tie-dyed ear molds so that there can be no mistake. I know that when adolescence hits, it will be harder for her to crow about her differences. She will want in-the-ear hearing aids and perhaps take them off in certain situations when she is self-conscious. No child wants to be different, at least in that way.

The Americans With Disabilities Act went a long way toward legally giving people with disabilities rights. But to truly remove the stigma, to really help those with different abilities we need to all be comfortable with calling it as it lays. Denial, or choosing not to speak about it only continues to keep others shrouded in the cloud of "shame" that can accompany people with disabilities.

I recently wrote a cover story for Parade magazine about brain injuries and the promise of cognitive rehabilitation for recovery. I received a great deal of reader mail in support of the article. But it was, of course, the one dissenting letter that stayed with me. The reader told me how much he enjoyed the story until he got to the line where I said "brain injured people are often seen as "slow" or "retarded." As the father of a grown Downs Syndrome son, he felt that by using these words I was insulting him and his family. In an email back to him I pointed out that by choosing those words I meant to underline how we stigmatize people with pat phrases.

I ached for this father. His son was in his 20s and yet he still felt the pain, perhaps even the shame that his son's disability carried. As I wrote him back and assured him my words were meant to advocate for people like his son, I thought about all of the families across America who have braced themselves to feel the slight, the whispers, the child's stare when they go outside their door with a loved one.

On the way back home from the walk, I passed the sign again and fought the urge to raise my fist in support. "Here is my child," the sign said, "and this is what you need to know about him." Slow down, pay attention and change YOUR behavior. There is a lesson in there for each of us.

Comments

[MNmommy]

Lovely post and sentiment, Lee.

We really should work together to diminish the stigma associated with all disabilities and different abilities and work together to improve therapy, treatment, education and societal acceptance. It's past time.

[kwombles]

Nicely done, Lee.

While those of us who have children and family members with disabilities are in many cases no longer hiding in shame or embarassment, the larger society's reaction to disabilities is sadly lacking in respect, compassion, or awareness. When society members avert their eyes and refuse to look the disabled in the eyes, pretend they aren't there and then refuse to render aid to a caregiver when a situation gets out of control, as I witnessed and provided assistance with yesterday, there is something seriously wrong.

Parents and caregivers need to be straightforward and work for acceptance, work for assistance and compassionately confront those who treat the disabled as if they do not exist.

[mittenrock]

Love it Lee. You, your family, your heart. And your sign. Nan was nice enough to trade one with us for a dog house. Go figure. Keep writing. -S

[DeafMom]

When I was growing up, I did everything I could to hide my hearing aid and did my best to "fit in." I bluffed my way through numerous conversations. It wasn't until I became profoundly deaf and began to meet other deaf and hard of hearing individuals that my life began to change. My three deaf and hard of hearing kids are now teens and they have a much different attitude than I did- they've got a sense of pride and a whole community to converse with. They also have better access to communication tools-- texting, videophones, captions and American Sign Language--things that I didn't have when growing up.
I chose not to pursue a sign on our street because I taught my kids to stay out of the street until they were old enough- and then I taught them to use their eyes to scan the streets before venturing forth.

[pickwickianmom]

Thank you so much for this article.
My daughter is autistic and I spent years trying to hide it.

One day, I just decided that my daughter and I should just be open about it. I told her that I was proud of her and that she had some amazing gifts because of her autism.
So she became very up-front about telling people. Some people dropped her (you'd be surprised how many and who will do that) but many more were supportive.

Several kids from her classes emailed her in shock and said they had always thought she was weird and they were nervous about her behavior but they were so happy to finally understand. Lots of them asked questions about it. Some of them have continued to send her emails and check up on her as she moved to a special program in another school.

I'm so happy to say that we have come far with disabilities. Most kids now are very understanding and happy to help. They just want to know what is going on.

There are plenty of times I've gone to bed and sobbed because I wish she had more friends. But there are many blessings, too. When I pick her up from school and she has worn plaid and stripes and bunny ears to school, I can't help but smile. She is such an individual.

I understand the feeling this mother had. Thank you!!

[LaurieAnn]

I have found it to be a huge relief to "come out" as it were about exactly who my son is and exactly who my family is. For me it's much less stressful to live life where it actually is than to try to keep up a false story. Like your daughter, my son has learned to tell people about his autism when he wants them to know and it has helped to create more understanding for him. Terrific that your daughter is able to do this as well. All be best on your journey with your daughter.

[pickwickianmom]

Same to you Laurie. I think we are going through many of the same issues.

[BandMom]

Wow, great post. I'm sharing it with my (various) parent support groups. ... Thanks!

[sro798]

I think the one thing to acknowledge is that these signs protect both the child and driver. A 30-ton car that a deaf child cannot hear? A sign is a no-brainer. When I was growing up (profoundly deaf) we did not have a sign. Only "progressive" families did things like put up signs to call attention to themselves. But then again, I lived in a neighborhood where all the moms and dads knew me, and my mom was stay-at-home. Times are different. We can't rely on our neighbors to protect us, moms are juggling jobs and motherhood, and disability is not as stigmatized. In hindsight, I think the sign would have embarrassed me. But if it makes the cars go slower, and the driver more aware, then I can't see how any mother would resist it. As for autistic children, it's the same situation. Most people walk around (and drive around) like the whole world is abled, like them. It's not until it is in their face -- like a street sign -- that they realize the fragility and complexity of humanity. - Suzanne Robitaille

[Patricia Dudek]

This is an amazing article, and the comments are great too-- It is my hope that many folks will read this and do as she recommends: Change Their Behavior!!

[PlaceboStudman]

Sadly, there just aren't enough people to care about these important issues, because they believe these things don't affect them.

This is one of the curses of living in our "it can't/won't happen to me" world

[LaurieAnn]

Blessings to all parents who posted here. I too am raising an autistic child with all the joys and struggles, marriage and social accommodations that the experience usually entails. I am particularly glad to see Ms. Woodruff address the emotional pain of parents when she says I have "learned long ago you cannot measure people's pain." How true. It doesn't matter what the cause of the pain is. At rock bottom pain is just pain. Sometimes I meet people who are as uncomfortable around me as they are around my son because I have times when I just can't put the pain away and pretend to be "happy" about the situation I'm in. To me, life is about being real, even if that means being sad; rather than about being a fake happy as a way to fight the good fight.

[pickwickianmom]

I really like your comment, LaurieAnn.

[SelenicMagick]

Kudos to the author of this piece.

For every IDIOT out there who believes that we should treat disabled children like Quasimodo (if you scroll down you can see a couple of FINE examples of people who would treat disabled children like Quasimodo)there are a hundred compassionate, caring individuals who recognize that our children are simply that... CHILDREN.

Simply because a person looks, acts or sounds "different" does NOT mean that they are any less human OR any less deserving of being treated like a PERSON.

This is NOT the middle ages and those of us who are raising disabled children are TIRED of being treated as though we gave birth to Quasimodo and the Elephant Man all rolled into one. We gave birth to CHILDREN who deserve nothing less than the BEST we can give them.

[PlaceboStudman]

The problem is that those who would treat their children like Quazimodo/Elephant Man hybrids actually truly believe that treating people like Elephant Man/Quazimodo hybrids ie locking them away in the basement sheltered away from life, *IS* what is best for the child.

Classic case of projection. What these people are saying is that this is best for them, the one who believes that. They are afraid of facing their own fears and ignorance of people's differences, and as I have said often times before around here, different has become a euphism for "less than" in many people's eyes

[lauraj40026]

Stud,I have CP and am a Catholic and no one in the church treated me with anything but respect.

[PlaceboStudman]

Sure, but CP is a disability that can be lived with and managed, admittedly sometimes with some difficulty. Others are not so lucky. Just because you have had a positive experience doesn't mean that everyone has or will.

[Roses]

Depends on its' severity how "managed" it can be. If the CP results in blindness, deafness, inability to walk, inability to use the hands, inability to talk, seizures, etc. it may not be so easily "managed". No matter what, it is a very apparent disability to others that may result in condemnation and hurtful, inaccurate assumptions by many people.

People with CP have to deal with physical challenges and prejudices every day of their lives. Anyone who finds a way to deal with this devastating condition is to be terrifically admired. Anyone who treats people with CP with respect is to be tremendously admired.

[SelenicMagick]

There are far more people who have negative experiences with regards to terminal illness and disabilities than there are people who have positive experiences when they have both a terminal illness and a disability.

Is there some reason that you are stalking around behind Placebo making comments directed at him that have nothing to do with the discussion at hand?

[GraniteSkyline]

Thanks for the uplifting article. I too have an autistic child and it is sometimes an uphill battle with public opinion. My son is only mildly autistic, which you might think would be easier as far as public opinion goes but it is not.

It is easier to be very different--people can grasp that.

I am currently in the process of transferring my son to a different school. Why? Because the current principal at his school told me to my face that he thinks my son's diagnosis is a load of crap. He informed me that my son is merely willful, disobedient, and lazy and that I just need to discipline him. And this from the principal!

But my son and I and his team of therapists and counselors trudge onward.

Lee Woodruff is correct. A parent must be strong and stand tall in the face the sneering and uninformed.

I'm going to make a sign for my front yard as well.

[Roses]

Good for you. There are school districts with public schools and teachers as well as therapists that do understand what your son needs. You can find good schools in your area by getting on the net and listening to parent groups.

[pickwickianmom]

I don't know where you live, but I was lucky enough to find a program in my school system (I had no idea it existed) just for the autistic kids. They go to regular classes but they if they have a bad day they can go to their special room. They also get to switch classes about five minutes ahead of time so they aren't in the crowded hall with everyone.

I really ,really hope you can find someone to help you at the school. This can make a HUGE difference for your kid. Fight if you have to---even if you are usually laid-back.

Isn't it amazing the people who will avoid or talk badly about you or your kid? I always hear about what people are gossiping about. It hurts.

[logicalchoice]

Being the parent of special needs twins I truly understand the frustration that comes with society's inability to accept people for how they are. My son has been receiving therapy for his autism since before he was a year old, but he still shows some sign of being different. His sister has severe brain damage from a difficult delivery and has been diagnosed with cerebral palsy. Their father is diagnosed with bi-polar disorder and is not accepted because of that label. He does a good job of hiding his disorder, but will not tell people what his label is so that they won't be afraid of him. We have been a loving, happy family for 10 years now and my life is full because of these diverse people. Their disabilities never make me sad because I know how great their abilities are. My son is a talented artist. His drawings are inspirational. His father is an accomplished musician and my daughter has an amazing capacity to love. She gives great hugs and runs into school friends everywhere we go. People that do not know them have no idea. I'm only sad for those people that are so stuck in their mindset that they would not allow themselves the pure pleasure of knowing these people.

[PlaceboStudman]

"I'm only sad for those people that are so stuck in their mindset that they would not allow themselves the pure pleasure of knowing these people."

Fear, of the unknown, and fear of a loss of control. These are the kinds of people who avoid rollercoasters and horror flicks. More often than not, they project their own fears onto their child and don't give the child the ability to grow and develop

[Roses]

Not really. They just have not had alot of contact because of embarrassment or societies' practice of segregating the "different".
Most people don't know what to say or do or make wildly wrong assumptions.
It's sad.

[HughToo]

Lee Woodruff's comments on autism were moving, and she could not remember if she played with autistic kids growing up. I grew up in the 1950s and never heard of autism or knew an autistic kid -- or at least a kid anyone knew was autistic. Now, all of a sudden, autism seems to be an epidemic. Is it just that the disease or syndrome or whatever it is went undiagnosed in the 1950s? Or were kids with autism isolated by their parents then? Was it something you did not talk about? How has it, apparently, suddenly appeared in such numbers?

[PlaceboStudman]

More often than not, children were misdiagnosed, or not diagnosed at all, and only labeled "troubled kids". Until recently with advances in psychiatry and pharmacology, there really was no way to put a diagnosis to symptoms that literally millions of kids have probably had for centuries. It is the society's lack of knowledge and adherence to ideology (many of these kids would have been put through a Catholic or voodoo exorcism because it was believed they were possessed) that has slowed the course of medicine to allow us to put a name to a wide spectrum of cognitive and behavioral symptoms

[mfb]

get a grip people! of course there's an epidemic. this suggestion that we missed all these autistic people all these years is evidence free nonsense. The reason we are seeing more chidren with autism is because...there are more children with autism. It's not that complicated.

[SelenicMagick]

It isn't "all of the sudden" actually... Previous to DSM III Autism wasn't a diagnosis that was given to start with. Children in the 1950s who had autism were FAR more likely to be diagnosed with "Mental Retardation" than they were to be diagnosed with autism.

In the 1950s children with autism, mental retardation and most other disabilities were typically consigned to state run institutions where they were left in splendid isolation, ignored and forgotten "unfortunates, left alone with their caregivers.

In the 1970s children with Downs Syndrome, Autism and most other disabilities who had formerly been living in state run hospitals started moving them to group homes where 6 or 8 would live together in one home as opposed to huge state run hospitals.

By the late 1970s MOST families who had a disabled child were keeping their children at home rather than consigning them to an institution somewhere.

YES, we have more children being diagnosed with autism spectrum disorders but equally we have more than double the world population today than we had 60 years ago in addition to improvements in communications which have made it easier for people to both find out information and share information.

[Roses]

There are two types of autism listed on the autism "spectrum". One is called "aspergers" and is considered less severe and the other more severe and is just referred to as "autism". There is better diagnosis but there are also actually more people with these conditions in our society. Tremendously more, it is an epidemic.
No one really knows why, but there are many theories. Some thoughts are vaccines or toxicity in our environment from different chemicals.

[LaurieAnn]

One of the more frustrating parts of having a child on the higher end of the spectrum is that they usually qualify for far fewer services than their more disabled peers. Also, other people who are not in the know about their disability tend to think of my son as just plain disobedient, mouthy, loud and unsociable (he is all of these things at times but there's a reason for it.) As a friend and I often say to each other "the good news is that he's high functioning, the bad news is that he's high functioning."

[usna73]

Your essay is almost perfect. I think you have said it all. Therein lies an unsurmountable problem for the nation and the culture we have created. Nobody reacts and alters their behavior nor their consciousness unless it meets their selfish motives. The past 30 years have been an acceleration of the arc that you describe from your own childhood.

My wife and I have raised two special needs children. One is now in college, still stigmatized by his lack of socialization in his growing years. Our younger son is profoundly autistic, with a low IQ and limited ability to communicate. He is never going to live independently. He suffered brain damage at the hands of childhood vaccines.

Over the past two decades my observation is that nobody much cares about our situation unless they are paid professionals. The society at large couldn't much be distracted in their own survival.

Again I applaud you. But, you are recognizing the "victims" here for their courage and advocacy. We need to find a way to change an entire culture to get the change we truly desire.

[LaurieAnn]

I too have found that most people could care less about my son unless they are paid professionals. Over the last six years my husband and I have lost most of our friends with typical children and have created a loving family of friends who all have children with special needs. They just get it. I'm not saying that no one without the experience can get it, I have one best friend of 30+ years who really does, but it's rare. Peace to you and yours.

[pickwickianmom]

This is the thing that makes me cry. How many people I know who don't really get it at all and think my kid can do things that other kids can't.

I just thought of something:: Have you had your kid tested through a psychiatrist or through the school?
My daughter tested really high on IQ in intellectual things--genius level---and that isn't a brag--it makes her life more difficult. BUT at the same time, her cognitive tests showed that she was at a 6-year-old level (she's a teen). So she is intellectually 35 and congnitvely 6.

It helps a little to understand the things that they have trouble doing. Lots of people think "Oh, so you know all about philosophy, but you can't put your folder in order or remember to number your items". And they just don't believe that they aren't doing it on purpose.