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!!

Autism/AS Emotions Run High--What to Do?

On a different forum someone broached the subject about the myth that children with Autism or Asperger Syndrome are not emotional or prone to emotion, which is--of course--refuted by parents of children with the disorders. Giving an example is that a child with AS can become very overwhelmed when his schedule is disrupted or changed in anyway and will express himself by crying or becoming very frustrated. The question was asked: What to do to help a child deal with his/her emotions when life takes a disrupting turn?

My son, who is diagnosed with a mild form of autism, has had much of the same issues, especially a few years back. He would become so overwhelmed with a change in his schedule or the mere ‘not knowing’ what comes next in his day, would set him off to such a high level of anxiety that I just had to intervene with meds. I am not a parent who is prone to abandoning any other type of coping therapies (e.g., OT, breathing exercises, yoga) but his anxiety was so significant that we needed to turn to a clinical psychiatrist and psychologist for answers. He has been (and is still) taking Fluvoxamine (Luvox) for about 2 years now and it has worked tremendously. Again, I am not a parent who “pushes” meds on anyone and I am not stating that this is the only alternative, but for Nick it was the only alternative remaining and necessary to relieve his anxiety so that he could relax at school just enough to concentrate on his work without worrying so much about his schedule. Shortly after taking the meds he actually admitted to me that he felt better and his teachers had mentioned that he actually started participating in class.

Mind you, he is on a very low dose, only 50 mg taken every night, and we have kept it this way through two growth spurts and he (so far) does not seem to require more. Our strategy is that we will wait and see how things progress before increasing the dose—in essence, slowly weaning him off of the drug if he is not requiring it any longer.

Personally, I think his success has been due to a comfortable school classroom and setting coupled with the medication’s ability to take the "edge off" for a boy who is prone to a higher level of anxiety than, let’s say, the norm.

Has anyone found meds to be helpful or just plain necessary?

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.