Tuesday, September 29, 2009

Autism: The things some people say, Part II

I still want to keep the talk up about my previous post regarding autism and bullying. I’ll visit the topic again soon, as a matter of fact.

Today however, I was inspired to talk about something I know many of us have dealt with and others have written about as well --- that is the insensitive, uninformed (I was going to say “ignorant”, but I won’t say “ignorant”, because “ignorant” would be too harsh --- I mean, you can say “ignorant” if you choose, and that’s you --- fine by me, it is a fine word and all; I just choose not to use the word “ignorant” as a personal preference) things people say to us when it comes to our autistic kids.

A little while ago I touched on this issue and would like to go into it a little more. I’ve compiled a little list that I have either heard, vetted from the Internet or that we have had said directly to us. When I’ve seen/heard responses to many of these comments, the retorts from the affected families are sometimes snappy and often sarcastic. Usually the implication is “this is what I would have/wish I could have said.”

So I’m going to add another approach.

I’d first like to suggest some serious, non-biting responses, to insensitive (or even dumb), and sometimes just plain old “uninformed” things you may hear. Since it’s far more fun, however, to use those snippy-snappy replies, I’ve included somewhat more “creative” responses, too, just in case that’s how you roll:

The Comment: “Well, in today’s day and age, that’s the behavior you have to expect when you don’t spank your kids.”
Suggested Response: “We’ve actually tried nearly every form of discipline anyone has ever thought up to control his behaviors. We’ve learned through trial and error, and trying to figure out what’s causing the melt-downs, that these are not behaviors of a ‘kid being bad’. He’s hypersensitive.”
What I’d Like to Say: “Thanks for the advice, Professor. Why don’t I leave him with you for a week (or even a day) and we’ll see if you can knock the autism out of him.”

The Comment: “That’s the behavior of an abused child acting out.”
Suggested Response: “And to think, yesterday, some lady told me I don’t spank him enough. While abuse can happen in homes of special needs children (as it can in any home, I guess), I take him to so many therapies and doctor appointments, I assure you I would not want to add the need for another clinic visit.”
What I’d Like to Say: “And to think, yesterday, some lady told me I don’t spank him enough. Seriously, please call DCF, or the Police or any other agency --- and ask them if they could please bring a behaviorist or Personal Care Attendant with them. I’m having a hell of a time getting the State and my insurance to pay for them.”

The Comment: “Well then, why can’t you just control your child? Can’t you just make her stop?”
Suggested Response: “I wish!”
What I’d Like to Say: “I wish!”

The Comment: “If he’s talking, are you sure he has autism?”
Suggested Response: “Autism is a spectrum disorder. That means it comes in as many flavors as there are persons afflicted with it. Some kids talk, some do not.”
What I’d Like to Say: “Talking? Lady, all he’s doing is quoting every line from the new Blues Clues DVD we just bought. Incessantly. Loudly. And to answer your question: Yeah, I’m pretty sure he has autism.”

The Comment: “Well, remember that God never gives you more than you can handle.”
Suggested Response: No suggestion. I think walking away is your best answer to this one. However, if you must respond…
What I’d Like to Say: “Bi... --- I mean ma’am, at this point, unless you'd like me to show you what I really can handle, I’m going to have to ask you to please remove yourself to your automobile and leave the area quickly.”

The Comment: “Some kids are late bloomers. There are lots of cases where kids don’t talk at four years old.”
Suggested Response: “Ma’am, my child has been tested and re-tested. His hearing has been checked and he has a speech therapist. While I appreciate that you are trying to reassure me, we have been working on this for two years now.”
What I’d Like to Say: “Do those same kids continually hand-flap, chew their sleeves, babble uncontrollably, melt down in a kiddie playground, beat on the windows and purposely injure themselves on a daily basis, too?”

The Comment: “Autism, huh? So that means he’s a genius like Rainman.”
Suggested Response: “While savants do exist, they make up approximately 1% of all people diagnosed with autism. Nope, he’s just a regular little boy.”
What I’d Like to Say: “Potato Chips in your shopping cart, huh? Bet your cholesterol is through the freaking roof.”

The Comment: “He doesn’t look disabled.”
Suggested Response: “He is.”
What I’d Like to Say: “Would you like me to hang a ‘handicapped’ sign around his neck and push him in a wheelchair? Up until you opened your mouth, you didn’t look ignorant.”

The Comment: “If it helps any, I have a friend at work that has an autistic nephew. So I understand what you’re going through."
Suggested Response: “I sincerely appreciate that you are trying to relate to me. I don’t say this to be rude, but you honestly do not understand at all what my family is going through.”
What I’d Like to Say: “Great! Then that means you have experience. I’ll expect you at my house tonight at 8 to babysit.”

The Comment: “‘Famous Celebrity A’ says that you should try ‘XYZ’ diet/therapy.”
Suggested Response: “Thanks for the suggestion.”
What I’d Like to Say: “‘Famous Celebrity A’ has unlimited time, money and resources to try any and every snake oil diet/therapy that comes back in Google results. Unfortunately our insurance will only cover certain things, if anything at all. If you can give me some money, your time, and a team of nannies, I’ll try whatever you suggest.”

The Comment: “Gosh, I don’t know how you do it.”
Suggested Response: “It’s all we’ve ever known, so it’s typical for us.”
What I’d Like to Say: Nothing funny about this. The Suggested Response says it best.

The Comment: “Aren’t you just using his autism as an excuse for his behavior?”
Suggested Response: “Actually, his behavior is a symptom of his autism. He has not control over it.”
What I’d Like to Say: “If it will get this conversation over with sooner, then the answer is ‘Yes’.”

The Comment: “Honestly, how hard could raising him really be?”
What I’d Like to Say: “You can take him for the day, if you’d like to know.”
Suggested Response: “Not as hard as it is for him to have to live with it.”


Friday, September 25, 2009

Autism and Bullying

Being bullied as a kid is tough business. It happens too much, and goes equally unreported. Many times the bullying goes on until the victim sees no other choice than to --- well, on this blog, let's just say --- take extreme personal measures. Fortunately however, a significant number decide they don't have to go it alone and elect to talk to a trusted adult. How wonderful when that happens.

What do the victims do to get bullied? They're smaller. Or fatter. Or have red hair. Or wear glasses. They are simply different. {I have to pause here for a moment while I ponder the significance of that word: "different" --- because something about everyone, every single person on this whirling sphere, including that bully, is different --- I've always found that to be curious} What then, when that difference is hand flapping or kooky behavior? Holding your ears and rocking back and forth during the middle of the teacher's lecture: that'll get you taunted on the playground, sure as I'm typing this.

What then, if the same condition that causes you to incessantly gnaw on your shirt sleeve also makes it difficult for you to communicate even your most basic emotion or concern? How as a child with a diminished ability to express your feelings are you supposed to explain to anyone just what's going on every weekday during that twenty minutes outside after lunch?

A friend who writes a family blog encountered just such a moment with her own son (read about it here). So far, their situation has been improving. But I have to sadly imagine that this is not always the case.

When you can barely speak, if at all, and can not communicate in abstract terms, and the ones who make you feel warm and secure live at the end of your six hours away from them, how do you cope with such a situation? Are the surrogates who are supposed to be looking out for you --- when your family can not be there --- looking out for you? Do you feel dread, or do you even comprehend the awful things being said to and/or about you? Maybe that's a benefit of autism for some: the teasing can't get to you, because it means nothing to you.

But just as with the neuro-typical kids playing around those of ours who are autistic, bullies can be cruel. I'm hard to convince that autism is an emotional armor suit against such a barrage. Kids are kids, no matter the shape, color or neurological challenge. And though our son who lives with autism is a year or two away from the potential bullying, this will be our issue tomorrow.

So I'm addressing it today: Do you have an autistic (or any special needs, for that matter) kid? Have you encountered bullying yet? How have you handled it? How has your little loved one handled it?

Please share your comments with us; they are very important. Give us some advice. Let us know what worked for you. We'll visit this subject again very soon.


Sunday, September 20, 2009

Dealing with Autism in Public: An Open Letter to "That Mom"

A reprint of an article I published on the user-produced site Associated Content
"The other day that mom with the little boy who was making so much commotion in the fast food restaurant noticed you staring at her. He was a handful, wasn't he? His screaming was incessant and the way he was challenging his mother: unacceptable. It's understandable that you would never allow your own child to holler at you like that, or bounce between the booths. You found yourself wondering what would possess her to bring an unruly child like that out into public in the first place.

As your respectful children stood beside you in silence, you wondered when he would just be quiet. And you wondered what kind of mother she must be. If you only knew what that mom wonders.

She wonders what she can do to get him to stop screaming. Sometimes it lasts all day, and lately, it's been almost every day. Then, while you put your kids back in the car, she wonders if he'll keep his seat belt on for the entire ride. You will get them home and they'll head right upstairs to play together nicely. She wonders if he'll decide it's time to begin switching the lights on and off repeatedly, or throw to everything that's on the desk onto the floor.

When your kids fall down, you can ask them where it hurts and they can tell you. It hurts the other mom that all she can do is hold her little boy and wonder when he'll stop crying. Later, while you wonder what story you will read to your child tonight, the mom you know nothing about will once again cry herself to sleep in her husband's arms.

You wonder later why God would give any child to "that kind" of parent, yet she's thankful that God chose her. You judge the stranger based on that one incident, while she wonders why you didn't just ask if you could help. She probably wouldn't have taken it, but she would have appreciated the gesture.

Your four-year-old has mastered the art of conversation. She finds it triumphant that her son mumbles, "go school" and "want eat." You already wonder what your child's high school prom will be like. Meanwhile the other mom wonders when her four-year-old will potty train. You wonder who your little one will marry some day, while the mom with the rambunctious son worries that he may not graduate from high school. You plan to send your child to the best university, and the lady that you never met wonders if she'll have to care for hers as an adult.

While she's not jealous that your kids obey, talk and dream, she does wonder what it would be like to be able to call her son "normal." He is who he is. There's no altering that, and his mother wouldn't change him for the world. But feeling your eyes burn through her melts her soul. She does the best he can, and wonders why you judge them both. She doesn't ask for your sympathy, just your understanding.

Her family puts a lot of time and effort into helping him become the best somebody he can be. You don't see it, but that's all right, because his mom sees it every day. She sees the victories as well as the defeats. You cast your judgment based on the one day you saw the unruly child in public. No one faults you for that, because the other mom used to do the same thing, back before her son's diagnosis. All the mom asks of you today is compassion and consideration.

Tonight, when you tuck your kids into bed, be thankful for the children you have and for who they are. Understand that, while you are getting butterfly kisses from your little angel, there are parents wondering when theirs will be able to say the words, 'I love you.'"

Friday, September 4, 2009

Same Child, Different Day: So much more than words

I've changed up the sub-title of this blog a little bit. Initially, this blog was only going to be about the booklet: maybe I could give some good, helpful info, and possibly earn a little gas money along the way. But so much has been happening with this online forum, that I have to change at least a portion of the title so it better reflects the mission and purpose of the posts.

The main title however will never change, if for no other reason than --- frankly --- it's too darn clever to mess with. After all, doesn't the title reflect what we go through on a daily basis? Each and every day, Jimmy, Nolan, Chris, Max, Tony, Alex, Raymond, Hunter, Keera and all the others too numerous to mention are exactly the same child they have ever been; that they will ever be.

But one day --- whether it was bright and sunny, there was the prediction of a flood, it was a Tuesday, you had just come from a birthday party or had just gotten out of bed --- somehow you happened into the clinic that diagnosed yours. The doctor(s) may have been old, adorable, a friendly short lady, a doc on his way to retirement or a team of over-priced professionals. No matter --- whether you were shocked or prepared, whomever they were slapped you square on the cheek with a palm-full of gut-wrenching news, and left you with a "what are you gonna do about it" welt on your face.

All of a sudden everything was different. The sun wasn't as bright as before, the tears fell like rain, you couldn't recall what day of the week it was, the happy memories of the party had all but vanished and you just wanted to climb back into bed. The day was different.

Though it may have been happening gradually for a few months, the days now began to show signs of change more quickly. There was no more predictability; something had happened and now you couldn't use the same toys to stop the heart-squeezing cries. As different as each day became, so it too became ritual: you now had to take the same route to daycare every day or put every piece of clothing on your child in the same, mind-numbing order time and again. This, too, was different.

But there was something that hadn't changed; hasn't changed. That kid was still the same one whose temperature you took when they were sick, the same one who you couldn't wait to smell after a bath, the exact same one who captured your heart as the nurse laid their swaddled body across your chest. This is the exact same child that they ever were, and that they are ever destined to be.

That last statement is not said in the vein of desperation. On the contrary; may it ease your frustration. While we should never give up on pushing our children's potential, at the same time, we should not expect overnight miracles. What we should expect are frequent regressions, a slow pace and insane, overly-emphatic reactions to the smallest leaps and tiniest bounds.

One day 4-year-old Nolan will wow us with his computer finesse or deliberate acts of affection. Then two days later at an outdoor party, we won't be able to socialize with friends because we have to guard against his constant ricocheting toward the street.

Who understands what I mean? Come on, show of hands? See, that's what I thought --- those with your hands up, live it; which is the only way to appreciate it.

So anyhow, that's why I can't change the main title of the blog.


Tuesday, September 1, 2009

Some Tidbits from "Same Child, Different Day"

A couple of tidbits for this post:
  • I saw this great article in our local news today, and I'm glad the outcome was positive. If anyone finds out who these parents are, I would love to talk with them respectfully about the experience.
  • Our monthly meet-ups for Exceptional Parents of Exceptional Children --- the support group I co-chair --- are back from their summer hiatus. You can read about our group here and about or visit our blog site here.
  • Nolan and I had a wonderful connection recently. As you know, many autistics are not good at communicating affection. Well, the other day as The Boy climbed the steps of the mini-bus, he shrugged off his backpack and headed down the aisle. Then, in an unsolicited, unexpected moment, he turned back up the walkway, murmured "head butt" to me (our 'little thing'), and then put his head on my cheek, grabbed my neck and squeezed. Then just as quickly, he let go and without looking back, sat in his seat for the ride to school. I was speechless and it was awesome!

Just thought I'd share these little bits with you.

Have a great day,