Please Keep Your Advice About My Son With Autism to Yourself

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My son, Charlie, has a sweet, gap-toothed smile and a twinkle in his chocolate-brown eyes that will make you fall in love with him instantly. He also has very limited language skills and a tendency to panic around sudden, loud noises. (Who doesn’t, right?) On warm afternoons, he’s inclined to strip naked in the living room if he thinks there’s even the slightest chance you’ll take him swimming, making things a little awkward when his two older brothers have friends visiting.

Now 8, Charlie was placed on the autism spectrum when he was just under 3. Thanks to a lot of hard work at home and finding the right school with wonderful and dedicated teachers, we’ve been fortunate to watch him make slow but steady progress.

I would never complain about my son, mostly because I think he’s amazing. And yet, despite this, I have friends with some professional experience in special needs fields, but limited knowledge of my son, who seem to want to offer me unsolicited advice and tell me all the things I should be doing.

One evening, I met an old friend for coffee. She’s a physical therapist who works in school districts but hasn’t seen Charlie in at least five years. Still, she wasted no time in grilling me on how he was doing.

“He’s great,” I said. “We’re really lucky he is where he is. He’s made tremendous progress.”

She stared back, seemingly unsatisfied.

“He can read short books now,” I offered.

“Yeah, but does he understand what he’s reading?” she asked, grimacing.

“We’re working on it,” I said, my grip tightening on my coffee cup.

“I know a mother with two kids on the spectrum, and she brings stress balls for them to carry while she grocery shops. It really helps. Have you thought of doing that?” she asked.

“Um, I don’t really have any problem taking Charlie to the supermarket. In fact, he loves picking things off the shelves and is a huge help unloading the cart and putting items on the conveyor belt.”

She seemed deflated but pressed on, determined to offer some life-changing nugget.

“Did you know that some of those indoor trampoline places have special times just for kids with disabilities?” she continued.

“Oh, we’ve taken him to those during regular hours and he loved it. That’s not a problem for us.”

I had to fight the urge to say, “And he’s learned to ride a bike without training wheels, and he’s trying lots of new foods and …”

Later, I thought, why do I need to justify how I care for Charlie to you? But this isn’t the first time I’ve gotten advice about my son, and I’m sure it won’t be the last.

I’m a mother who travels with stacks of flashcards of sight words in her purse, so I’m on this. I don’t allow three minutes to pass without us interacting — even if it’s just to reinforce social questions or give Charlie the tickles and kisses he loves and craves.

I choose to live each day celebrating the things my son can do. But please don’t ever mistake that for denial or ignorance; I’m painfully aware of his limitations. My heart breaks when children ask him to join a game of tag in the playground, and he can’t quite understand what they’re saying, let alone participate. But I rejoice in the fact they asked him at all. To his peers, at least for the first few moments, he was just like them. Several years ago, that would never have seemed possible.

The word autism can be big and terrifying for some people, and I know on some level my friends think they’re helping. They’re trying to impart some wisdom they’ve picked up along the way. But just as I wouldn’t presume to give unsolicited suggestions on how to guide their typically developing children, I’d rather they refrain from offering me advice on how to help my son, especially when I haven’t asked for it.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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When My Daughter With Special Needs Was Teased by Her Peers

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Kate has taught our family many lessons over the years. Just last weekend, I learned another one about forgiveness.

Kate attends a wonderful program called Our Place. Their mission is to support teens and adults with developmental disabilities so they can live meaningful, productive and socially connected lives in their home community.

You’ll notice in Our Place’s mission statement the attendees are referred to as adults and teens first. First and foremost, they’re people. Even if Kate can’t really read or write, drive a car and pick out the seasonally appropriate clothing, she’s a person with emotions just like you and me.

I wasn’t there on Saturday night, but the staff pulled me aside when I picked Kate up and told me Dick had been really mean to Kate. Jane joined in, too. They were so mean to Kate that she cried — really hard. The staff handled the situation, and by the time we got there, Dick and Jane said hi to me, while Kate came bounding down the stairs full of stories about karaoke night and singing “High School Musical” songs. Dick asked when he and Kate could go see a movie.

I didn’t bring it up the incident to Kate later that night because, to be honest, my heart broke for her for two reasons: 1) I wasn’t there to protect her. I’m her mom and that’s my job. 2) I had to wrap my head around the fact the kids who are teased all their lives for being different also tease and make fun of people, too. Surprised? You would think they knew firsthand what it feels like and wouldn’t want to hurt anyone else. But then you have to remember, first and foremost, they’re people, too.

Cheryl Noll the mighty

In less than two hours, Kate’s heart had evidently been broken, mended and the situation was forgiven and forgotten. How many of us can say that? How many of us aren’t speaking to a family member about something that hurt our feelings? How many of us have hurt someone else and didn’t ask for forgiveness? Kate, and others like her, experience life the same way we do, but their perspectives are different. I often wish mine was more like hers.

I did ask her this morning if she wanted to talk about what happened last night that made her cry. Her response: “No, we apologized. What’s for breakfast?” Just like that, it was over for her. But I’ll be thinking about it for a long time and worry about her. But that’s my job. Her job is to share the joy, and she’s doing it very well.

A version of this post originally appeared on All I Ever Wanted to Be Was Normal.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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What Her Classmate Didn’t Do When My Child With Cerebral Palsy Needed Help

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It was Monday, August 11, 2008 – the first day of school, ever, for my daughter Sarah Kate, who has cerebral palsy. My husband, Mr. Andi, took a job in Mayberry five months earlier, and Sarah Kate and I moved down to join him at the end of July. Although she’d spent a few years in mother’s-day-out and preschool programs, she’d never done it in Mayberry, nor had she met any of the children who lived here.

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After years of worrying, she was finally starting school. I know a lot of moms are sentimental about the first day of school, but that isn’t me. I didn’t worry about my baby being separated from me. Perhaps that’s a dubious facet of my personality or perhaps my baptism-by-fire into motherhood cured me of separation issues (she did, after all, spend her first 53 days apart from me in the NICU).

What I did worry about was how she would do in “real” school, navigating hallways and a larger class size and a lunchroom with kids who didn’t know her.

Unlike me, Sarah Kate had no fear.

After “Meet the Teacher Day,” she declared she didn’t want me to walk in with her on that first day and maintained she’d be just fine by herself right up until that first morning. In the end, I did walk in with her — not because she was afraid, but because amid all of the excitement she forgot to stop me. She posed in front of the school’s white picket fence, confident but impatient before we walked into the building.

All of the children were lined up, seated on the floor in the gym, arranged by classroom but in no particular order. I snapped a few quick shots of her, marveling at her lack of apprehension. She struck up a conversation with the boy sitting behind her — a sweet boy named Ben whose mom would later become my oft-mentioned friend, Dawn. The time came for the kids to head for their classrooms, and she was gone.

Recently, my friend Jenny sent me this article about a young woman with cerebral palsy studying abroad in Greece. Greece wasn’t wheelchair-friendly, so the other students with her “found a way.” It reminded me of that first kindergarten class and Sarah Kate’s teacher, Mrs. T.

Although she’d been walking independently for about two years, Sarah Kate had only learned to stand still a few weeks before school started — at home, under supervision, not in a busy classroom or hallway. Mrs. T invited Sarah Kate to do a “show and tell” about her AFOs and her walking challenges. Mr. Andi went to school to help out and witnessed her telling her classmates it’s hard for her to walk “because I have holes in my head.”

Not long after, I went to the school to have lunch with her. At the end of lunch, when the kids were lining up to leave, Sarah Kate dutifully got in line. I saw her stumble and start to fall, reaching out to grab the nearest object which happened to be the shoulder of the boy in front of her. It’s a scene that had played out many times before and almost every time – if the object was a person – she would still fall because the person would turn toward her when she grabbed them, inadvertently pulling her support out from under her.

But that’s not what happened.

The boy never moved. He didn’t shrug, turn his shoulder or even look in her direction. I could tell from his posture, however, that it wasn’t because he hadn’t noticed her. When Sarah Kate grabbed him, he became motionless — for her — and he stayed that way until she regained her balance. When she let go of him, he continued on with what he was doing before the interruption, as if it had never happened.

Mrs. T cultivated a family in that kindergarten classroom.

Every member of that family knew what Sarah Kate’s limitations were, and they knew what they were supposed to do when she needed help. That little boy knew that when Sarah Kate grabbed him, the best way he could help her was just by being still until she could recover on her own. Mrs. T knew what to do to ensure Sarah Kate was fully included, not singled out, just another kid in the class.

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If you’re the parent of a preschooler with a disability, you probably dread the beginning of school. In six months, my son, Nathan, who has Down syndrome, will leave the cocoon of preschool and join the other kindergarteners at the Big School and it scares me every bit as much as it did seven years ago — and probably as much or more as it may scare you. But it will (probably) be OK.

Because if your child begins his school career with a wonderful teacher like Mrs. T, it will be better than OK.

It will be awesome.

A version of this post originally appeared on Bringing the Sunshine.

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Why I Thank the Man Who Sneered as My Son Had a Meltdown at Costco

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To the senior citizen at Costco who stared at my family,

I want to thank you for making my daughter a better person.

I’m sure you’ve seen the world and truly experienced life. I’m sure you have a family; I saw you have a spouse. When you turned around, stopped and stared at my autistic son (E, who’s 4 years old) and my family with that look of disgust and contempt, you opened up an unparalleled opportunity for discussion, the true and utter ignorance in harsh judgment.

We’ve discussed that people hate for the wrong reasons, and often for no reason at all, thanks to my deceased stepfather, a Holocaust survivor. But we’ve never discussed how people can show disgust and judgment without knowing the situation. Certainly, this momentary encounter was not how I planned to discuss this with her, but your ignorant judgment of my 4-year-old child as he melted down within the giant, echoing metal walls of Costco was exactly the push I needed. My response to your contempt was exactly what Elle needed to witness: a giant dose of reality.

Your unkind, horrifying sneer changed my daughter’s feelings about judging others completely. It was a lightbulb moment I hoped for as I was raised in a world of acceptance and tolerance. My daughter lives in a different world, a different country, in fact.

In case you don’t recall, our conversation went like this:

You: Look of hostility, contempt and revulsion as you ever so gently shake your head…

Me (raising my voice because you are far away): “My son is very upset and he’s autistic, there’s no need to stare.”

You pause as we continue through the aisle toward you. Elle, my 11-year-old daughter, is at my side begging me to be silent.

Elle (whispering): “Mom, it’s OK, he didn’t mean it, just keep going, shhhh.”

Me (flatly, not with the seething rage I was feeling inside): “You need not stare, my son is autistic and he desperately wants to leave here.”

You: “Oh uh, I uh, I just thought someone was hurt, I uh. Sorry.”

Me: “Of course.”

Elle breathes out.

We moved forward, Elle and I, and we discussed exactly why it was so important to speak up. I believe responding to the contempt, to the judgment is one basic way we can create a society of acceptance. I asked her if she thought the next time you witnessed a child melting down or experiencing overstimulation, would you again jump to that conclusion?

Elle’s response: “I think so, he was a jerk.”

Me: “If the next person were as candid as I was, would he react like a jerk again?”

Elle: “Probably not.”

We discussed it later as a family, spreading tiny seeds of comprehension and helping them to grow. My son got it, too!

It was wrong for you to look at us that way, to make assumptions about my son’s behavior, to think the absolute worst of us.

Your resignation, your immediate change in demeanor when confronted, also helped us out, because my daughter learned that standing up to people making harsh judgment calls in a respectful, non-hostile way — regardless of how hurt or angry you are — can be effective. I hope this stays with her for life.

You should know I felt furious leaving Costco. We returned to our car, meeting my husband there, and I sobbed from hurt, from the lack of control I feel when my sweet boy feels so terrified, and from confronting your palpable anger with a required calm.

Today, I revel in your response. I celebrate the opportunity to plant these seeds in the beautiful, loving, accepting minds of my older children.

I wrote this note to simply say thank you and to remind others that it’s OK to go out. It’s OK to confront people who stare in a calm way and help them to learn. It’s OK not to pass judgment, to examine the circumstances and see if we can learn, help, or most importantly, encourage change.

Warmly,
Faith D

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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What to Say and Not to Say to the Parent of a Child With Autism

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I’ve written quite often about how having a child with autism forces you to have far more patience than you ever thought you could have… but there are still limits. And even though your patience levels can seem limitless for your child, you may find you don’t have the same tolerance when it comes to others or some of the ignorant things they say, whether innocently intentioned or not.

There are a few lists out there of things not to say to us parents, but this is more of a list of things not to say or else you may just push us beyond the breaking point. Don’t worry, though, I’ll follow it up with some things I think would actually be nice to say.

Do not say:

  • Your kid just needs proper discipline.
  • My kids would never get away with that.
  • What made your kid autistic? Was it something you did?
  • You shouldn’t take your kid out if they’re just going to be like that.
  • Your kid doesn’t look autistic.
  • Are you sure your kid is autistic?
  • Why would you have more children if there’s a risk they could have autism, too?
  • Sorry, I don’t really want my child to play with yours.
  • Your kid will grow out of it, right?
  • Autism? That’s like “Rain Man,” right?
  • It must be nice to get special funding or special help!
  • You need to watch your kids better
  • Maybe you’re just bad parents.
  • But all children do that.
  • But your kid was so good for me.
  • Referring to your child with a nickname such as “Rain Man.”

Yes, these are actual phrases I’ve heard or have heard secondhand from parents who told me someone said it to them. OK, now that your blood is boiling, let’s continue on.

Here are some nicer things to hear.

Do say:

  • You’re doing such a great job.
  • I don’t know how you’re able to do so much.
  • Your child is progressing so well; you must be very proud.
  • If I can help, just let me know.
  • I don’t know much about it, but I’m willing to learn.
  • I’ve read some studies and heard the news, but I’d love to hear what you think.

I’d love to hear some good suggestions from you. What have you heard or what would you like to hear?

A version of this post originally appeared on Stuart Duncan’s blog.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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How to Ask About and Understand My PTSD

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When I tell someone I have Post Traumatic Stress Disorder, or PTSD, most of the time I get the reply, “What?”

PTSD means a trauma happened, and even though it happened in the past, the footprint it leaves in your mind is so severe when something reminds you of it, usually described as “trigger,” your brain undergoes extreme stress, expressed by both physical and mental reactions. Sometimes even recalling the events unexpectedly is all the trigger you need.

The mind is a beautiful, crazy thing.

If you still don’t get it, think of this: Have you ever mentioned something attached to a strong emotion, and then felt that emotion as if it happened? Can you remember tasting a wedge of lemon? Or, men: How about watching another guy get kicked in the groin?

If any of these evoked physical reactions from you as you read about them — your mouth watering at the thought of lemon, wincing at the thought of a groin injury (Sorry, fellas.) — then you can begin to see how PTSD works. Your brain, in all its splendor, has stored a physical memory of that thing. Most everything in life we do has a physical and/or emotional memory attached to it. Even if we haven’t done that particular thing before, we’re reminded of a time we did something similar. When these memories occur, we can often feel very physical reactions.

The most commonly referenced example is a soldier who has seen awful things in war. They’ll often come back “shell-shocked.” But it happens in more scenarios than you think.

What PTSD means to me is if I’m minding my own business in my house and the phone rings, my heart races. I get sweaty palms and feel immediately scared and on edge. Of what? Well, there have been times I’ve picked up the phone only to have abuse hurled at me. I would block numbers and people would call from private numbers. I’d pick up the phone and get a nasty surprise. The verbal abuse and associated behaviors of the people who used to do this was so bad, and lasted for so long, I now hate phones. Especially when they’re ringing.

If I hear someone closing their car door outside, I look around to see what kind of car it was. I peer through my curtains, trying to be invisible, to see if it’s the car of someone I don’t want at my door. Every time. It’s because I’ve told people in the past not to come to my house, and they still have. I’ve been stalked before by people who have caused a lot of harm in my life, and I live in constant fear they’ll find my new address and show up at the door. And if they ever do, I’ll probably have to move.

If I see a car that looks like the car of someone I used to know but don’t want around me ever again, I panic. I could be driving and suddenly be paranoid the car I’ve spotted might be following me. I continue to panic until I see the driver is a stranger and not someone I should worry about. For these reasons I memorize license plates.

If my doorbell rings, or someone knocks, I hush the children and try to pretend no one is home until I can peek through the little peek-hole and see who it is. If it’s a friend who has shown up unannounced, I will still only reluctantly open the door. And even then, I’m a bundle of nerves for a few minutes until I can calm myself down and tell myself it’s OK.

When I’m unexpectedly asked to explain why I have PTSD, I’m filled with sorrow. I end up crying in public. Having to recall events can suddenly put me in a funk, and I will stay in that funk for days. Which brings me to perhaps the most important point:

The reason(s) why anyone has PTSD is none of your business. Don’t suddenly ask them about it. You would not serve your vegetarian friend a rare steak. So don’t ask someone with PTSD to tell you why they’ve got it.

When you ask someone with PTSD to explain why they’ve got it, you’re asking them to recall the incident that caused it. That is most certainly a trigger. Like serving a vegetarian a bleeding piece of meat and forcing them to eat it, this is cruelty for someone with PTSD.

This stuff is no joke. Panic attacks are not fun. Feeling out of control of your reactions is not fun.

If I have a friend with PTSD, I ask, “What do I need to know about this?” and let them tell me what to avoid when interacting with them.

PTSD means, because a trigger could happen anywhere, at any time, I don’t go out much. I don’t socialize much, and if I do, I have to force myself to go and put on a brave face. Because people in everyday life don’t understand, and can easily label sufferers of PTSD “crazy,” the best option for many seems to be to shut themselves away. The lack of understanding of this condition, the same as with most mental health issues, is ultimately like delivering a death sentence to those of us who have them.

Although these conditions could happen to anyone, we’re being forced into cages because of luck of the draw, because of ignorance and because of the stigmatization. In these cages we cope, day by day. Is that really living?

PTSD is like a mental scar from an occurrence that caused a mental wound. In order to not open up someone’s scars, it would be wonderful if everyone took some time to educate themselves on this condition.

A version of this post originally appeared on Talking This and That.

For more resources on PTSD, or for more information about getting help, visit Mental Health AmericaIf you or someone you know needs help, please visit the National Suicide Prevention Lifeline. Head here for a list of crisis centers around the world.

Do you have a story about your experience with mental illness? We want to hear it. Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. More info here. Thanks!

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