"The Storm After the Diagnoses" Poem

As some of you know I did a lot of poetry writing when my kids were younger (3 and 4)--and while I was going through the emotional roller coaster of understanding and adjusting to my kids' (who are just a year apart) diagnoses (which came at me back-to-back)--my daughter is severely autistic and my son was diagnosed as pervasive developmental delay (MR) which we know now is mild autism (aspergers). This was one of the poems (or prose) that I wrote when my world had just collapsed all around me and I was making my way without much help ... It's about our previous school system and realizing that people are just people no matter what your circumstances (or life) might be. Teachers are trained to teach our children of special needs but are not trained to deal with parents of children with special needs.

"The Storm After the Diagnoses"

When you feel like you’ve just hit bottom.
When you think it couldn’t get any worse—it does.
My daughter needed more services, and I needed more help.
My son was just newly diagnosed with a disorder
That I still couldn’t digest
So I called her school’s director for help, but got no answer.
I waited for word, and got no response.
I yielded when I should have charged;
I could take no more.
My emotions were riding high
Building like a turbulent storm;
Turning the once blue skies dark; the calm ocean fierce.
I drove to the school, opened their doors
And sailed in on my tumultuous wind.
I demand help. I demand services. I demand blue skies!
The teacher: the one with the bad reputation
Was the one I spoke with and she was not sympathetic
But rather quick and dismissive. Was I rude?
I was inquiring about her boss’s whereabouts
And desperately seeking a meeting
But she didn’t seem to care
“She’ll call, she'll call”
Was all I got in a brushing-me-off kind of way,
As if I were a nuisance like a bill collector
And was appeasing me with “It’s in the mail.”
She knew about my son’s new diagnosis
And my daughter’s new problem
But did she offer to help or understand—No!
Maddeningly enough, she barely maintained eye contact
As if she had better things to do.
I grew angrier and angrier by the minute
And wasn’t about to go away without a final word for the director
And an attention grabber for an unresponsive teacher.

“Pathetic Witch” printed in neon as bright as sun
Atop my daughters IEP for all to see.
(Funny how the teacher actually got it wrong
“Cold-hearted Witch” was what I actually called her.)
Nevertheless, small lettering of ugly words
Have a powerful way of magnifying and glow
Like a big, yellow caution sign flashing brightly in my face.
The round table struggled not to laugh
And I could barely speak.
A trust between parent and teacher had gone bad.
An agreement of confidence was broken.
An emotion of dread was unanalyzed. Or was it?
I had realized at that moment that business was business
Not matter the business and delicate circumstance.
Gossip stops nowhere especially when an unsatisfactory
Reputation warrants an extra brownie point.

She sold me out; fed me to the dogs;
Led me upstream; hung me out to dry.
Look out for number one—isn’t that the philosophy?
The ugly surfaced; the nasty prevailed;
The Cold-Hearted Witch was living up to her new name.
Institutionalize was her word of the day.
DSS was also thrown my way.
Mouths hung open. Eyes glared. Solemn mood.
Silenced lingered for what seemed like an eternity
As shock waves settled in the thick of the minute
Was this a war or a child plight? I wasn’t sure?
But pay back seemed to be in store!

Lesson number one:
Remember the rules; remember the politics; remember the game.
No matter what wrong was committed; no matter whose fault it was;
No matter what feelings were exchanged, always:
Kiss up; suck up; play the political game and be friends
No matter how much you cringe
Because you will be rewarded--your child will be serviced.

Living with Aspergers/Autism: personality/disorder

Living with aspergers is probably the most interesting component of being a parent. Hey, who wants to raise a boring, typical kid anyway? Aren’t they usually materialistic and just hang out with their typical peers and age appropriate friends? Yeah!

But I’ve got someone else who has a very interesting approach to life and verbal spew. My son, Nick, tells me how it is—how it really is, and to everybody else as well, for that matter. I love this component to his personality: a telltale sign that he will always speak his mind freely and openly.

As with most people/kids on the autism spectrum, they do not understand little white lies, sarcasm and figure of speech…

For instance, when I ask Nick if I have wrinkles on my face—like around the eyes and mouth? He says an emphatic—"YES! "

Do I need my hair highlighted, can you see my roots, Nick? —"YES! "

Do I look a little fatter today than I did yesterday, Nick? …Well you get the picture.

One does not have to be autistic to be this painfully honest, all young kids are, as we know—they haven’t learned this little, delicate skill yet; but as autistic kids get older, they still hold on to that “Oh, so cute, brutal honesty” component that makes them so endearing—but only in some social settings.

Of course we help them learn the “play act” of little white lies in society; we need our kids to be accepted and liked, after all.

Same thing goes for sarcasm and a "figure of speech" concept. I’m still trying to teach this to Nick. He takes everything so literally, and he so often will come home from school peeved about something or other… and it’s my job to ask him what happened? (This time!) And what did this person say to him? And to help him understand—it’s not personal!! (Then I need to define—“It’s not personal.”) Ugh, and the vicious cycle expands.

For instance, the other day I said to him “Oh, don’t eat Wasabi, it's so hot (spicy) you'll die!” Uh, his eyes blew open and my autism meter was in the red.

He does get very mad at himself when he takes things too far. It’s his nature—the perfectionist (OCD) side of his personality (disorder); or when he can’t do something successfully the very first time, like win at his Nintendo DS or Wii games; or even ride his bike—his temper goes into overkill:

Personality and disorder—tell me, does one define the other? Nick’s disorder does affect his personality in more ways than one. Outside of his autism lies a boy who is fun, easy-going and has a great sense of humor. Which other people also enjoy and love him for.

The other side is his monster: OCD, perfectionism, anxiety-ridden burden that he is learning to live with (and me too); to reduce it, to shrink it down to an itty-bitty flaw and nothing more… I mean we all have flaws; no ONE is perfect.

That’s my job!

More on Disorders

Good Therapy

My son sees a therapist with me every month because he is on medication for his anxiety—Luvox, which has worked well for him. The therapy appointments are wonderful and I highly recommend it for any child on the autism spectrum. It’s a place where he can discuss his feelings and mine too (Yeah, I sneak stuff in, too—don’t you know it!!), but it’s also a good exercise in social skills and one-on-one interaction. And, also, since we only see her once a month, we can actually see and monitor Nick’s improvements in communication.

The therapist is someone who has spent her career working with kids and adults on the autism spectrum, so she is very familiar with Nick and his disorder—which is vital to a good patient/therapist relationship, obviously—otherwise, the therapist would probably hang herself due to all of Nick’s narrow-minded interests and perseveration tendencies (Oh, don’t I know it!!). This 60-something year old therapist doesn’t mind talking about superheroes once in a while, but she would like to change the subject and does…to help teach him good communication manners. But Nick’s clever—I’m telling you, because the last time she tried this trick, he found an in: He wanted to talk superheroes (I knew he did—I could tell that he was bursting at the seems to ask her about the latest superhero movie that she saw (or didn’t see) and why, why for the 100th time doesn’t she like Batman and Spiderman??) but she changed the subject to science and then the weather came up and BINGO, Nick’s eyes blew open and the smirk shined through (and I knew he was up to something) and he said I saw lightning the other day! And the therapist was thrilled and asked him to tell her all about lightning, and he said it was like flash---ah, Flash Gordon—that is!! (aka, superhero)

Ugh!! We all laughed.

Aah, it's Sooo good to watch someone else try to do the mothering!

Let's Talk Social Skills

Let’s talk Social Skills…

My son, Nick, has Asperger Syndrome (or mild autism), and as a child with AS, he has a very difficult time in social settings, or better yet, he avoids social situations like the plague. It is actually excruciatingly painful (figuratively speaking) to watch him NOT socialize or run away from a peer who approaches him to say hi. One day we were at our local pond for a swim and a boy from his class called out to him and came running over to say Hi. I was all smiles and thinking: It’s a boy, a real boy coming to talk to him! But Nick practically ran into the woods to avoid a conversation. Arghhh!

I’ve tried two different social skills classes to help him improve his skills, because let's face it, running away from a nice boy who wants to play, is not a boy skilled in social behavior. The latest social skills class was for an entire year and mostly one-on-one learning/coaching from the teacher, something that she felt he needed; the class prior to that one had more kids participating, but Nick didn’t apply any of the skills he learned from either of the two classes to everyday life. Hence, running in the woods when a boy says Hi.

Last year I had him take track (7th grade)—something that I knew he liked, and he did great. I showed up for all of the meets (but he didn’t need me, Yay!) and he enjoyed himself and was happy (enough) and comfortable (enough); however, he didn’t chat with anyone but the coach—and even she had to pry anything out of him.

I’ve talked to him about this issue and I’ve told him that it’s rude not to say hello to someone he knows and who says hello to him, like in the halls at school or at the mall (seen that one too) because that kid would get his feelings hurt. His reply to my attempt to appeal to his “softer side” or conscience was that he would still prefer not to say hello: “It's too hard and I’m too shy, I can’t do it.” He would say.

I know, of course, the reason he avoids talking or making conversation is because he knows that he is not talented in this area. But practice, we do…when we have people over for dinner or other social events, we do encourage the kids to sit with the adults and have them listen and participate, and by having guests and outside family members encourage Nick to participate (in a fun and humorous way) usually does the trick; he eventually opens up.

So I’m hoping that he will outgrow this “shy stage” during the next few years, like other things he has outgrown—like hugging his mom, for one.

Learn more about Asperger Syndrome (AS) Here.

Does anyone relate to this problem and can offer some advice?