"Same Child, Different Day" Site Closing: Where to go now

Because of the useful and relevant information it provides, "Same Child, Different Day" will stay up and available. However, I will no longer be monitoring this site. Our life has taken a different direction, and I've developed two new blogs to reflect that.

"Read All You Want" is my writing blog, and I will be using it as a writing portfolio as well. It has autism anecdotes, but now only as they pertain to my writing. Please click here to see what it has to offer.

The second blog, "Our Journey, Our Way," touches on how autism affects us as we travel through life: to restaurants, bowling alleys, arcades, beaches, parks, theme parks and any other travel experience.  Please check it out, and feel free to share and comment.

In fact, please share this post, and bring your and our friends to another look at life with autism spectrum disorders.

Thanks for your loyal support, and I look forward to traveling with you and writing for you on my other blogs.

Ten Things You Would Overhear Every Day in Our House

Anyone reading this post has stories to tell about the goings on in their unique household.  I’m sure you have even said things that, to a neighbor listening in, would sound as though you were drained of all coherent thought.  In this post, I want to share with you a list of ten things we say in our own home that, while not all necessarily quirky, we should at some time record for easier playback.

Though I agree that there are likely a households out there that repeat one or two of these phrases daily, in our House of Chaos, there isn't a saying below that doesn't go unsaid every day.  Ten of the most popular are, in no particular order..

1)  “NO PASSWORD”:  Each and every mother loving day, Nolan insists on connecting with one manner or other of electronic device.  We try not to connect him with anything that can display a movie, mostly because of numbers 2 and 3 (and in part #4) below.  Because we lock the devices, part of that objection requires us to repeatedly utter “No Password,” to which we are met with screams, repeated volleys requesting the secret code, crying, high decibel whines and whatever ruckus he thinks will annoy us into giving in.  If we do, we are guaranteed to holler…

2)  “NO PAUSE/PLAY”:  This should actually read “No Pause, Play, Stop, Fast forward, Rewind, Eject, Reinsert, Freeze frame, Zoom”, but I wouldn't have time to type all that (especially since we only say this statement every day).  Like I said in #1, we try to keep the remotes, Wii controllers, computer and iPad passwords, smart phones and other DVD/Netflix access points away from Nolan.  If we slack (daily) and he gets a hold (daily) of one of the aforementioned forbidden items, he will resort to pressing any combination of the electronic commands listed above. To do so is to feed caffeinated cane sugar directly into the vessels of his sensory diet.  That leads to us yelling…

3)  “STOP BOUNCING”:  As do many kids with autism, Nolan stims.  Repetitive movie quotes, humming in a way that mimics the Tasmanian Devil, and the “typical” hand flapping are all daily self-stimulation activities we have come to know and love.  But, every time we cue the intro to Spongebob Squarepants or Yo, Gabba Gabba (or any other sherbet-colored children’s television show), our +100lb. boy starts rocking the joint --- and I don’t mean by being musically inclined.  When he starts bouncing, the living room sways, the TV that (if I do say so myself) is securely mounted to the wall begins to jiggle, and you can ride the surf of the hardwood floor boards the length of the house.  Then, it isn't long before we yell…

4)  “TURN IT DOWN”: This may be the least fair of all the items on this list, because --- let’s be honest --- what parent doesn't at one time or another crave peace and quiet?  In this case, though, we’re talking about both Madison and Nolan, and redundancy.  It’s every day, several times a day, that we utter this statement.  Whether it’s the iPad, Netflix or that robot we bought for Christmas, the device unfailingly manages to reach a decibel level somewhere between “chainsaw” and “fighter jet squadron”.  Ask the user to “turn it down”, and they will --- but only until they think we can no longer hear it.  Then, the child will kindly return the volume to its previous ear-bursting level, most likely so we don’t miss out on all the fun ourselves.  Of course, while this is going on with one child, to the other, one of will have to say…

5) “STOP WHISTLING”:  Guess what Madison has learned how to do.  All the time.  Ask her to stop whistling, however, and she will reach an indignant posture that is reserved for the most arrogant diva.  We may have asked her to stop whistling because its suppertime, Mom is sleeping or she has been at it for eleven hours.  Regardless, all she heard was that she would never again be allowed to whistle for the rest of her life.  She sulks, we get upset, she has to go to bed, then we have to say...

6)  “STOP KISSING THE MIRROR”:  There’s a nice, full-length mirror hanging on the hallway side of our bathroom door.  Though she’s no sort of “clean freak”, Lori is wiping that thing daily.  It would appear that neither Nolan nor Madison is intimidated by nor suffers from heightened hypersensitivity caused by this shiny, reflective decoration.  On the contrary; each one --- eight and nine respectively, mind you --- cannot resist placing a full-on lip smack every time they head through the bathroom door.  Not long after this, we will have to tell Nolan…

7)  “YOUR UNDERWEAR IS ON BACKWARDS”: One might think that this phrase is reserved for me.  Rest assured, I usually get this one right the first time without too much instructional assistance.  Poor Nolan does this so often, though, that (well, first off, it made this list; and second) I’m beginning to wonder if at this point in time he thinks that’s just how they go on.  No matter; it isn't long before we have to beg…

8) “NO MOMMY’S BED”: This one has only been nightly for about three months.  A year before that, it lasted a little over a year and a half.  I mentioned previously how Nolan demands nightly and repeatedly that he wants to sleep in our Lori’s bed.  It isn't a quiet request and it won’t arbitrarily happen.  Oh no.  Even on the off chance he falls asleep in his own bed, by between 12:30 and 3:30 in the morning, Nolan will end up in our bed.  We no longer try to fight him on it, either.  Not if we want the rest of the house to get any kind of sleep.  And, at that time in the morning, I just want to get to my sofa.  Then, in the morning, there is no doubt Lori will have to say…

9)  “WAIT FOR IT”:  We really should put that Angel Guard seat belt latch cover back on the buckle.  This nifty device keeps Nolan (any child, for that matter) from unbuckling the belt.  Otherwise, every day as soon as the van slows to Docking Speed, we hear the dreadful ‘click’, and he is standing up.  Lori started saying “wait for it” as she would travel the loop in front of Nolan’s school on the way to dropping him off.  If she drawls out a slow “waaaaaait for it,” the boy will at least stay buckled in --- even though he may think she’s playing a game.  It works in parking lots, driveways and fast food drive-thrus…go ahead, try it at home.  While you are doing so, I’ll explain that we constantly have to tell Nolan…

10)  “GET YOUR HAND OUT OF YOUR PANTS”:  Again, this one amazingly is rarely directed toward me.  And, once again, Nolan and his underclothes made the list.  This one happens so frequently that he can recite it back to us on command.  One afternoon I had to stay after work for a meeting; Nolan was allowed to hang out.  Lori left him with his iPad, and I had him situated in our meeting room on a beanbag.  I turned around to check on him and, there he was, in this room full of female teachers, digging in The Valley.  All I was able to say was, “Nolan...”  As if we had rehearsed it (and I guess in a way we had), Nolan replied, “Get your hand out of you pants.”  Oh, how they laughed...

Way to stay classy, son.

~~Jon

Rough Sleeper

Nolan doesn't know how to sleep.

"What's that?" you ask.  "Know how to sleep?  Like, he can't choose a position?"

No.  I quite literally mean exactly what I said: the boy doesn't appear to find the "natural periodic state of rest for the mind and body, in which the eyes usually close and consciousness is completely or partially lost, so that there is a decrease in bodily movement and responsiveness to external stimuli" (www.thefreedictionary.com).  I'll elaborate.

During school nights especially, we try to get Madison and Nolan to bed for 8:30 at the latest.  Sometimes we succeed with this, which is especially helpful when Lori and I are attending classes ourselves and need the time that they are zonked out to get our own work done.  More often than that, though, we aren’t even putting them in bed until about 8:30 --- and that is due to our own procrastinating.  There is a fear Lori and I share that we associate with most of the overly dramatic transition times in our house --- times that make a Lindsay Lohan temper tantrum look like a Teddy Bear picnic.

(Oh those dreaded transitions --- a time for fighting to get them off the iPad, screaming as they refuse to move down the hallway toward the bathroom, rerouting as that trip down the hallway turns into a detour into a random bedroom, our struggling to drag a limp, lifeless body back into the hallway, frustration as one child can’t resist admiring herself in the mirror, irritation as the other one can’t resist planting his lip prints on the same mirror, and concern as they both need to be retrained once again on the same procedures we retrained for the prior evening regarding teeth brushing, hand washing, potty using, medicine receiving and turn taking.)

Eventually, they make it into bed.  Stories have been read; covers have been pulled up to chins and kisses have been doled out.  Once the lights are off, we know what happens.  Every night.

“Mommy bed,” we hear, and we ignore.  “Daddy, Nolan Mommy bed?”  For now, it’s phrased as a question.

I don’t know why I always do, but I can’t continue to ignore him, and I answer every time.  “Go to sleep, Nolan.  In Nolan’s bed.”

“Mommy bed?!”  It’s a louder question this time.

“No, buddy.  Daddy’s laying in Mommy’s bed tonight.”

“Mommy bed!” he shouts again.  I ignore the request this time, and the cacophony of repetitive demands begins.

“Mommy bed.  Mommy bed!  Mommy bed!  Nolan Mommy bed!  Daddy, Nolan Mommy bed!”

And if we continue to ignore him: “MOOOOOMY BEEEEEEDDDD!” he screeches two octaves higher.

He knows the buttons to push.  “Nolan!” I tell him directly, “You are laying in Nolan’s bed, tonight!”

The debate continues for a little bit, and sometimes he even falls asleep.  Or so it seems at first.  He wasn’t always this way.  He used to insist on sleeping with one of us when he first started sleeping in a Big Bed…and we would usually give in.  Then one day, he just stopped.  He would fall asleep in his own bed and we wouldn’t hear from him until morning.  Then, about three months ago, it started up again.

The one piece that never seemed to go away, however, and happens without fail as though he’s on a timer, nearly every night at almost exactly 12:30 in the morning: Nolan screams.

It’s a scary sound, and often lasts for a half hour or longer.  Sometimes the screams are accompanied by moans, sleep talking, and other alarming, indescribable noises.  Quite often, while we assume he is sleeping, he will holler, “Mommy, no!” or “K’wee (his sister Kaleigh), stop it,” or some other random, sometimes inaudible statement, all the while maintaining the chorus of other unsettling sounds.  No one is in the room bothering him, and we have ruled out the cats sleeping too closely to him.

During this time, he also kicks, turns sideways, and rolls in his blanket like a Cheese Dog on a convenience store steam roller.  We try to calm him down by patting his back, and --- curiously --- sometimes yelling his name works.  There are nights though where no amount of consolation will work; the poor guy just will not sleep.

I guess that’s a bit of an exaggeration.  He sleeps, of course, if ever so very lightly; and not very well, or very deeply.

I’d imagine that’s why he ends up in our Mommy’s bed, anyhow.  

Autism and Carly Fleischmann, in her own words (literally)

Check out the video below; this girl is amazing!

http://www.bigdandbubba.com/pages/archive2012.html?feed=447152&article=9637873

Thank you to Big D & Bubba for the link!

~Jon

Happy 6th Birthday Nolan

As I get into my adult years, I like to think of my birthday as more about my Mom than about me. I mean honestly, do I want to keep counting them anyhow? I've had enough birthdays to see the inaugurations of ten presidents (and participate in votes for half of them), see the start and end of America's space shuttle program, watch as personal computers grew by shrinking (from the TRS-80 to the iPad), and to be called "people your age". So, to say that I no longer experience the same thrill from each new birthday as I once did would understate the truth.

The same goes for the first few birthdays as a new parent. For me, at least, the little ones were still young enough that they didn't feel the full thrill behind the streamers, crepe paper, pastel cakes, gift wrap and party hats. Those first couple of celebrations (maybe numbers one and two) were for us, the Parents. Admit it. Even you found some gratification (and maybe a little selfish pride) from the attention doted on you, Mom and Dad, in the name of your precious little angel.

But at a certain age, that doting turns toward the kids, which is as it should be. They acknowledge the gifts they receive with smiles by the pound. Their laughter, the screeches --- all approval for of a job well done. At that time, its all about the kid. Or, at least, it should be.

Not in our house; not with Nolan. Today is Nolan's birthday, and for us it was simply the day after yesterday. There were no giggles after tearing into a package. Last night we heard no sound of anticipation; no "Daddy, tomorrow's my birthday" or "what did you get me, Mom?". He can't tell us what he wants, so he doesn't screech in excitement when he gets it.

We tried to liven up tonight with a trip to Applebee's --- mainly because they sing that familiar birthday cadence (the one that only the people embarrassing the birthday-ee enjoy). Instead of smiling from ear-to-ear, he covered them with his hands. Not the reaction we were hoping for.

A friend told me today that he's adorable, and the fact that he doesn't get the same emotion from birthdays as other kids doesn't matter; that he loves and respects us anyhow. I know she was trying to help; I really do. But its little comfort to parents who want their children to experience joy; parents on this side of the fence. Birthdays, Christmas, even Easter Egg Hunts.

Nolan's sisters and his cousins traipsed the yard outside Grandma's house this past weekend looking for hidden plastic eggs. But to get Nolan to do so meant breaking him away from SpongeBob. He took five minutes to find twelve eggs; then he was back in his pineapple under the sea.

Maybe that explains why no one --- not anyone --- called him for his birthday, either. It was probably figured he wouldn't understand the reason for the call, anyhow. Maybe not. But I would have known.

Not that it matters, since at that age it's about the kids anyhow.

~Jon

Same Child Different Day: Back after a long break

Hello all my friends and fellow bloggers. After over 10 months away from the site, I'm back to doing what I do best: advocating and bringing important autism support and info here for you! I am sincerely sorry I took time away, though it was not all in vain, I assure you.

I was working hard to bring a new business concept to Vermont, one that I had hoped would both be a benefit to others (what I like to do anyhow), and would in turn afford me time to spend with my loved ones; those closest to me who need my help the most. While I have not given up entirely on this Vermont home inventory venture (Permanence), I have had to scale back my time. The results currently are not relative to the effort.

Anyhow. That doesn't have much to do with "Same Child, Different Day" specifically. To get back into the groove, I'll just post today that I'm coming back, and am bringing our local autism support group back with me. Exceptional Parents of Exceptional Children (EPEC) is the Rutland, VT area's primary 'spectrum' support organization. This, too, has been on hiatus due to family concerns for both myself and my co-chair.

But we are coming back, ready and able to support the needs of families, caregivers and those living with autism in the Rutland, Vermont and surrounding areas.

I'll be back with more info soon about other supports. But I wanted to let all of you know that I have missed talking and sharing with you. I won't let that happen again!

All the best,
~Jon

Off Topic: My Wife's New Family Blog

No, I don't mean my wife has a new family (though sometimes I see her daydreaming...). Lori has decided to throw her hat into the blogging fray with her new blog Nothing More, Nothing Less.

In it she talks a little bit about each of our kids, her frustrations and fears, her attempt at tackling college with all that's going on around us, and putting up with me (which, I would have thought would have been the most pleasurable of experiences...you think you know someone).

Anyhow, if you get a chance, please stop by her blog and give her your thoughts, encouragement and suggestions. Oh, and remind her what a great guy I am.

Really.

Do it.

Please...

~Jon

Some December Tidbits from "Same Child, Different Day"

I just realized that this must have been a busy month. I haven't posted anything in almost 4 weeks which, no matter what has been going on, is a rarity for me! There has been much ado in both our autism and non-autism worlds, and I guess time just got away from me. I mean, holy cow! Can you believe another Christmas has come and gone? Here's where we were last year with this blog: Same Child, Different Day Content - I was still describing the chapters of the booklet and was only on the 4th post! This is the 45th post, and so many people say they have been helped by both this blog and the booklet "Same Child, Different Day: One family's experiences during the first year after a child's autism diagnosis": Review, Reader Critiques, Global Reach, Radio Interview.

I wish I could write more often; I should write more often. But I can only do what I can do. As I have done once before (and am sure I will do again), here are a few tidbits from the past few weeks, both related and unrelated to our autism work --- because it all relates, doesn't it?

• Our new business is forming nicely! I'm just waiting for the VT tax department to get back with me on a couple questions, and I need to finish designing one form on my end. I have a meeting with BROC Micro-business --- a free, community-based service in our city which helps new entrepreneurs --- on January 7. If this all works out (and it has to), in the end it will mean much more time to spend with the family. God knows, Lori could use the help! How do you manage work and therapies?
• Speaking of Lori, she'll be starting college in the summer. She'll attend the Community College of Vermont and is looking to concentrate on Pediatric Physical Therapy. Has dealing with autism inspired you in any way?
• I published an article on Associated Content in opposition to our state Medicaid department making the unilateral decision to reduce Nolan's coverage. Since our local papers wouldn't print it, I took it online. One reader was prolific in her comments, and feels that my opposition is counter to the best interests of Nolan. I tried to explain the crux of the article regards the state agency making an unqualified reduction. The commenter implied that, regardless of the entity making the decision, we are using our therapists as a crutch. Please slide over to the article and post your comments. I value your opinions.
• We wrote a 4-page letter to the state, requesting they reconsider the above decision. Surprisingly, a week later they wrote back that they had, and his services are once-again covered to an acceptable level. Tell us if you have ever had to battle with state agencies.
• Then, we found out from our private insurance company that they (the insurance company) should not have been covering Nolan's services based on his diagnosis. So, to make an already-frustrating situation even worse, I'll have to battle with them, along with my illiterate state legislature that doesn't believe autism should be covered by insurance. Does your state require insurance companies to cover autism therapy services?
• (Downer Alert!) We found Christmas to be tough this year. As far as I'm concerned, Christmas in our house is about the kids. Lori and I like to give each other gifts, too. But as long as the kids get taken care of, and are excited Christmas morning, our job is done. Well this year we were looking for a great reaction from Nolan, based on some of the strides he has recently made. We'd hoped, anyhow. Instead, while his sisters eagerly tore open gifts and screeched happily, Nolan paced the house, covering his ears and making noises akin to Taz of Looney Tunes fame. He did play for hours with one of the toys we bought for him (an inflatable ball pit with a tower and "ball" waterfall), but somehow, it just wasn't the same. My good friend Deanna, who is always the most wonderful voice of support, encouraged on Twitter, "you may have a long way to go, but remember the journey is worth it. Sometimes hard to do, I know...". You can say that again, Deanna! Tell us about times the frustrastration that can be associated with autism has affected your family and how you have coped.

~Jon

Autism: A Speech Milestone

We all know that coping with speech issues can be a priority issue for most families living with autism. Getting these kids to repeat words can be a milestone, never mind having them utter a spontaneous sentence. Nolan shared some spontaneity back in September that prompted me to post this short article.

Since then his speech has been getting better, and he has been repeating a lot of things we say. He's also been doing a great job of responding to different questions we ask, and his replies have been quite appropriate. But getting him to just say a sentence is something we had yet to experience. Until today.

We wait for the bus with Nolan and his sister about a block from our house. Since its been getting colder, we've been standing by in the idling, warm Jeep. Nolan knows when we see the bus turn up School Street toward us, it's time to unbuckle and get outside. Usually, we have to ask him, "Is that the bus, Nolan?" He will of course, answer, "Yes."

Today was a shock. A big, in your face, exciting shock. As the big yellow tube headed for us, Nolan said most assuredly, "Look, I see the bus." Now, some of the words were garbled, and he dropped a few consonants, but he said it all by himself! No prompting. No questions asked. Since Mom and I were both reading, we hadn't even seen the bus for ourselves yet. This was all Nolan. And it was wonderful.

Who knows when the next sentence will happen? I don't even think I care. To me, this says that he has an excellent chance of "making it", to overuse a phrase. Whatever...we're proud of him.

Good stuff, huh?

~Jon

Off Topic: Halloween

Hi all. I'm still involved in a couple of outside projects, but wanted to post, since I haven't in a while. I know my posts are usually, strictly autism-related. But just this once, I wanted to share just a little.This was the first year we dared to take Nolan trick-or-treating and, aside from a little trouble getting him to adjust to the costume, it all went off without a hitch. There was a little rain --- not a hard rain, though. My wife called it "memory-making!"

Anyhow, he was adorable, and his sisters looked pretty good, too. Let me know what you think of everyone.

Off Topic: My New Writing Blog

This is a quick post and way WAY off topic --- As some of you may know and/or realize, I like to write. At the risk of sounding like I'm patting myself on the back, I think I do a pretty darn good job, too.

For a while now, I've been posting the odd article or two on Associated Content and that has been alright. But my first true love is the short story. For a couple of months now, a fellow blogger friend has been nagging (nee, encouraging) me to post some of my works.

Sure, it's dangerous putting your creations out there for free for the world to see, but for me, that's just the point. So I've created a blog dedicated solely to my writing. It may not be Harper's Weekly or New Yorker, but it is somewhere to be seen.

So if you are interested in that sort of thing, please stop by Read All You Want and, you know, read all you want. It doesn't matter, 'cause I'll make more! Click on that link above, or here: http://jonwrites.wordpress.com/

Hope to see you there.

~Jon

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.”

~Jon

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,

~Jon