An Ode to the Perfect/Not so Perfect Child

Oh, the sad stories we hear and tell:

This story was reported via the Telegraph (here), which conveyed that show business is just that: show business. The cute little girl who sang at the Olympics and who has gained world attention was just a prop: a cuter alternative to the real singer--whose only wrongdoing was her appearance of buck teeth.

Please tell me how this poor 7 year old (Yang Peiyi) is supposed to feel about herself? That she’s—what?—not good enough…even though she won the “grueling” competition to sing at the Olympics, and did sing, but she just couldn’t show her face or be recognized for her talent—until now, also reported in the Washington Post (here).

This is no different than what most parents of autistic/asperger children have to face and advocate for the rights of their child to participate with their typical peers. The brutal “not good enough to participate” in a typical classroom, school playground, school field trip, band... is what our kids are understanding and recognizing—no wonder why my kids are so shy.

Tell me, how many ASD kids “learn” to feel inadequate from the start? If you’ve seen what I’ve seen through the years, then the answer to that question is: every single one of them.

School administrators or directors would just look at me and nod:
“Yes Mrs. Collins, she is participating with her typical peers” (cue, fake smile)

Or

“Why, why do you want Meghan to be integrated with her typical peers, Mrs. Collins? "
(I think the ignorant school principal asked me that one.)

"Well, why do you think you f…-up!! " (No, I didn’t actually say that, but thought it though, while reuniting my lower jaw with the upper...)

Arghhh!

Yes, I’ve learned to get along with all of them: teachers, principals, school officials...and, let’s just say that it doesn’t hurt to send an informative (OK, nasty) letter to the school superintendent to make sure things stay—how do you say— “within our children's civil rights…”

But sport your big smile and muddle through to the next inevitable battle with the ignorant...

The Nonverbal Child

One of the biggest challenges that I’ve faced with Meghan, as opposed to Nick, was that she is nonverbal (here). I've tried and tried to get her to say words—and she would try and maybe say one word, but it was just too tough for her; some verbal approximations and nonverbal gestures are about all she had/has for communication skills, besides—tantrums, screams, pulling hair and biting—ouch!

We use(d) (PECS) communication books and augmentative communication devices (here) —3— to be exact. The only problem with the devices (electronic output) were that they were prone to breaking or malfunction (hence, "3"), especially if…um, the child is a little rough with it—like flinging it across the room—uh-huh!

Most of her tantrums were, of course, due to frustration; not being understood would send anyone over the edge—and I think Meghan was just better at it than most! I do remember when she was 3 and 4—and one of her favorite movies was Charlotte’s Web. I remember seeing her smile when the farm animals were talking and singing. I would sit back and watch her and wondered what she was thinking: huh, the farm animals can talk but I can’t?

How articulate that pig;
what a vocab the goose;
even the goslings repartee
—how hilarious?

Communication Disorder--this is the diagnosis--social inept. The component that make us come together: dismantled, impaired, incurable. The need still holds true for her, nonetheless: acceptance, friendships, relationships; camaraderie, closeness, love. We all need it, even the love incapable. I have always wondered who will rescue her for this right and save her from the lonely damage, other than her mother, father or brother? The promises come from and for her brother already. He has the personality—the skills to rescue himself; he will make it through the lonesome scare.

I wonder if her thumb will always be there?

I can only think that she enjoys communication of all sorts; I believe she gets the idea and that she understands a good deal of what is said to her. Does she think that she’s just an exception? I don’t know.

But she is trying to talk and I know that she is proud of herself when “out pops” a word that everyone can understand—she becomes giddy! But she’s coming along…there’s no time-table here; it’s a slow process from some autistic children and if she’s learning to be patient--very patient, then we must learn to be too.

More on apraxia of speech Here.

Candy Cigarettes for Kids---Why??

My son, Nick, has a mild case of OCD (Obsessive Compulsive Disorder) as do a lot of kids on the spectrum, but I think it is fair to say that he does become overly obsessed about a subject, person, or a thing more than his typical peers. In the past it has always been about Superheroes: Spiderman, Batman, Superman--you name it, he’s obsessed about it. However, his latest obsession seems to revolved around--now get this--candy cigarettes.

I don’t know how exactly he made the “maturing” leap from superhero video games to cigarettes; I can only tell you that we are NOT smokers, and we don’t have friends or family who smoke; but someone in society has struck his interest, or maybe school health class because they did a series on: Why you should not smoke and "showed" a video. Either way, he picked up on smokers and is now--obsessed. Now he does know--from health class and from us-- that smoking is unhealthy and I reinforce that smoking is very bad--causes addiction, and can shorten your life…blah, blah, blah…is probably what the boy has been hearing because he’s still obsessed with the subject. A phase, perhaps, but listen to this little adventure:

We were away for a week at the cape (Truro) and went to the flea market that is set up at the Wellfleet Drive-in Theater--if you know the cape, then you know this place. Well don’t you know Nick spotted a toy cigarette; looks real, but, of course, it wasn't and, "dontcha know," that his father actually bought it for him. I was floored and Nick was in make-believe cigarette heaven...

“Good God!” was what I had to say along with a little prayer when Nick and I were waiting inside our minivan for my husband and daughter to finish up shopping, and I had the van door wide open. I casually notice two older nuns walking by from a mere distance and were, seemingly, interested in our car--Hmm, I thought, so I turned to look at Nick seated in the rear of the car. He was relaxing back, feet up on the seat and just puff, puff, puffing away on his “cigarette.” Puffing as real as a real cigarette would look--the boy could have won an academy award for his role under the category: “Fake-Cigarette Smoking.” Horrified, I looked at the nuns, the nuns looked at me, we all looked at Nick, and Nick was just smiling away and oblivious… and if my face looked horrified, they looked like two sopranos singing in a choir. I had to turn away and laugh--just a little--but what else could I really do? Jump out and yell across the parking lot: “ It’s just a ‘toy’ cigarette that my 13 year old is puffing on to his heart's content and that I ... um… bought for him..." Yeah?… NO!! I let it go and I “prayed” that they would just keep on walking… "Have a nice day, Sisters…”


Candy and toy cigarettes need to come off the market!!

Earlier Detection Benefit or Question

It is a known fact that children with autism rarely receive a diagnosis before age 3 or 4. But behavioral researchers believe they are homing in on specific behaviors that should drop the age of first diagnosis down to as young as 18 months.

Early diagnosis has become increasingly critical as treatments for the potentially devastating developmental disorder advance and research begins to show that the earlier the disorder is diagnosed, the better the prognosis.

Here is the report posted by the American Psychological Association.

This article also points out that such "tools" for early detection are not proof of the disorder and could lead to a misdiagnosis and unnecessary therapies--given the fact that autism is a tricky disorder to diagnose due to the correlation of age and social behaviors in young children. This is why most researchers hope they will find biological or genetic markers for autism that could accurately diagnose autism at birth and would bolster the behavioral measures. Some teams are well on the way toward finding one or several autism genes.