Werd...

Like any new paradigm, when raising a special needs child, you are thrust into a world that has its own vocabulary. It’s a fine mix between a psychological and educational vocabulary. As a prior teacher, one of these I was quite familiar with—but the other was new. And frankly a little annoying.
As I began this journey with myriad professionals and the piles of books sitting on my nightstand, I found myself simply immersed into this vocabulary. I had failed to get the “Autism for dummies” series, but luckily I had the gift of inference having received the first part of my education OUTSIDE of Calfornia. So with a little observation and thinking, I was able to decipher the true meaning of these new words coming at me.

Typical: a kid without any developmental or physical delays. Also called neurotypical.

Yeah—I know. We’ve all heard this one—maybe not this word, but we’ve been through the routine. When I was a kid, typical was “normal” and everything else had a label—usually retarded or handicapped. But those terms are passé now, and I think I’ve seen a millions different labels since. (I also have a special needs aunt, so I’m a bit more familiar with this particular dog & pony show) Like a lot of people, I always thought this was silly. I have to say, I get it now. If I sit and refer to my friend’s kid as “normal”, well where does that leave Ben? Yeah—it’s like hearing your neighbor’s meatloaf is restaurant quality, and you think, well, what the hell is wrong with mine? Nothing. They’re just words. But words don’t wipe the smirk of Rhonda McSupermom’s face when her kid does something yours doesn’t. Correction: I know one or two words that might, but that would hardly help my cause…

Receptive Vocabulary: the language we receive.

A problem in this arena is best explained with an analogy, it think. Imagine you were dropped into a foreign land, lets say, Utah on a Sunday. Being it is an arid state, you might wish to quench your parched throat with a tasty libation, and since you have no idea how or why you’ve been dropped in Utah, perhaps that libation should contain a certain percentage of alcohol. So, imagine your confusion when you find no open bars or liquor stores. You ask passersby where you might find such a libation, only to hear them say to you that liquor may not be sold on Sunday. These words make no sense in your brain. Beer cannot be purchased? How does one celebrate one’s favorite sporting event if it should happen to fall on the weekend? Where might one escape the drudgery of every-day life and tilt with complete strangers? You are confused and frightened. You decide that speaking to these people is not a good choice, and remove yourself. Next time your son, daughter or significant other look at you with quizzical horror, remember Utah.

Expressive Vocabulary: the language we express.

If you have a problem with receptive, you will no doubt have a problem with expressive. Example: If you don’t understand that the person honking their horn at you is trying to tell you that you have a coffee cup on the roof of your car, you might respond with the wrong expressive vocabulary—either verbal or non-verbal—such as a string of four letter words questioning the parentage or IQ of the honker in question, or a simple non-verbal finger gesture. A strong grasp of the surrounding receptive vocabulary can lead to more appropriate Expressive Vocabulary.

Transition: moving from one activity to another.

This has become a favorite, since it is one of Ben’s weaknesses. Once little man has a routine, or if he’s having a fabulous time doing something, he does NOT want to be told that we are going to do something else. I mean, if you were told, “no, you need to put down that margarita and come over here and eat some lima beans,” would you not object? Typical parents have to deal with this too—but the objections evolve into different forms. My son? Screamfest. Your son? *whine* “But WHYYYYYYYYYYYYY?” Which is more annoying? Who can say?

Meltdown: The Special Needs Tantrum
(not to be confused with the special needs boogie)

Toddlers have tantrums. We all know this. Kids with Autism also have tantrums. Managed in similar ways. Basic rule: ignore a tantrum and it stops—maybe not instantly, but it will stop. This is not what this word meltdown is about. Just google the words Austim and Meltdown: page upon page of descriptions, possible set-offs and desperate pleas from parents on how to deal with this phenomemon. Ok. Imagine a tantrum. Now multiply times 100. Add violence. And half a day. That, my friends is a meltdown. It’s like the Israeli/Palestinian conflict of tantrums. Every parent has their strategy—some work, some don’t. That’s because most of our strategies involve how to handle this occurrence at home. (i.e.—I put Ben in the bathtub. Calms his shit down immediately) But many of these meltdowns happen OUTSIDE the home. Which leads to the even more fun, “looks from strangers”. I really think I should start taking pictures and then make a coffee table book. Call it “Views From a High Horse”.

IEP: the school district’s educational plan for your child.
(Or, an hour of making you feel like an idiot.)

This meeting, following the joyous evaluations you’ve had, is set to discuss these evaluations and what they plan to do for your child. Now, my snarky comment aside, many school districts have lovely IEP meetings with caring teachers and therapists who work together to create an educational plan that best suits your child’s needs. Those meetings tend to occur in districts that do not have the words “first” or “second largest in the country”. For those of us in those districts, these meetings can be…well…shot worthy. They often start with READING TO YOU. Yes, it’s story time children. Let me read this report to you instead of giving you your own copy to read before the meeting so that we can “discuss” the findings. This is right up there with people who make power point presentations and then READ THEM TO YOU. Frankly, this whole thing could be handled better if they would just set up a bar with some snacks. You have a drink, eat a little crudite’ and then take 30 minutes to discuss the findings and the plan, make sure everyone is happy, or if not, how to discuss implementing alternate plans. I realize not everyone is college educated, and moreover, I recognize the sad state of education in the state of California—but if we continue to treat parents like they are idiots, that state of education isn’t going to get much better.

At this point, it’s probably safe to say I should start carrying around a notebook to start recording all these lovely words and phrases. Never know when you’re gonna be stuck in Utah (or a few choice states in the south) on a Sunday. Ok, a notebook and a flask. And a camera—to catch those “looks”.

Evaluate This

Next week, I get to take Ben in for another in a string of seemingly endless evaluations—this time through a state agency known as the Regional Center. The battle to get this first evaluation through them will be the subject of another post, but let me just say that this agency has done nothing to gain my confidence. It’s been a 6 month battle to get to this point, over silly things like our zip code and other joyful discussions with Miss Molly Forgetful over at intake. But I am hoping this will be the last batch of evaluations we will have to endure for a while.

Ben’s first evaluation was heaven—and I thank G-d that we went through a private organization first so that I could get a glimpse of what and evaluation is SUPPOSED to look like. Had we started with the school district, my outlook might be more bleak…

The purpose of the evaluation is simple—determine what’s going on with the kid. Is he speaking? If so, how much? Is he listening? If not, what are the impediments? Is he playing like a kid should? Pretending? Copying? Imagining? The wonderful ladies over at Briggs and Associates were thorough and positive. They played with him for over an hour, asked us numerous questions, watched Ben eat to determine or rule out any physical impediments, and discussed among themselves privately their professional opinion before giving it to us. They answered any and all questions. And they determined that Ben has a problem with his receptive and expressive vocabulary –meaning he doesn’t always understand what’s coming at him, and thus has difficulty expressing what he wants to come out. One of the therapists put it in a fantastic analogy—when Ben first started using language, it really wasn’t working for him, so he put it aside and instead began to use other forms to communicate—grunting, whining, grabbing, pointing. And since that worked, he never went back to using words. And since listening didn’t make much sense, he didn’t spend much time doing it—which is also a detriment to language development. So we needed to go back to that original point—where language began to go astray and help him learn to listen, copy and utilize language. This would happen through play therapy—and through work we did at home. He was assigned an awesome therapist and we began work the following week.

We worked with our therapist while I began the process of getting him evaluated with the school district. At the age of three in CA, the local school district will offer speech therapy and other services for children who are developmentally delayed—all free. (well, tax funded) But since I live in (and used to work for) the second largest school district in the country, I knew this was gonna take time and paperwork. I sent the appropriate letters, got the appropriate responses and set up appointments for three evaluations: speech, psyche and health. Our private therapist prepared me for what would probably happen, even mentioned that a big label might be coming my way—because that’s what would get Ben the services he needed. I gulped and tried to mentally prepare, and moved on to the first eval.

Speech—the best of the three. We met a LAUSD speech therapist at the local elementary school, who had a suitcase full of toys and a positive attitude, even though we were relegated to the copy room of the main office. She tried to engage Ben in some activities, to which he flatly refused. He showed some interest in the toys, so I got down on the floor with him and engaged him in some of the play-therapy activites he was familiar with. He made eye contact, tried a few new words and played—but only with me. When the therapist would come down to his level, he would just refuse. In her words, it’s like he knew he was being evaluated and simply did not want to cooperate. For that, she called him highly intelligent (which are two words ANY parent loves to hear) and went on to write a fairly honest and interesting report. I was pleased with the speech eval. and looked forward to the psyche since he hadn’t had one yet.

If anyone hears me say I’m ever looking forward to a psyche evaluation again, smack me.

This time around I had to go to another school—a middle school—and go around to some gate in the back. (as time moves on I’m beginning to see a trend here for special ed—in the back, hidden away, never the best conditions. By the way, we CAN see the inequities, you know. This is hardly the Emerald city, and my dog could beat up Toto anyday of the week) Found the room, but we were early, so we had to wait—so Ben played with the new toys he saw. All the while being watched. If they were gonna observe him, couldn’t they just say so? Anyway, finally the school psychologist comes over, and puts a puzzle in front of Ben. Instant success—this kid can work a puzzle. Then she tries to stack blocks. Ben’s current frame of mind? Destroy. Fail on the block building/copy exersize. Matching colors? Fail. Answering questions to a complete stranger who he’s been eyeing with absolute distrust? Fail. You get where we’re going here. When she began to question me—Ben’s eating habits, etc—while Ben went off to play with a rocket he had seen and proceeded to put it in a cabinet and take it out, about 5 times. And then the magic sentence: in a soft voice she says, “Has anyone spoken to you about Autism?”

Trying to keep it together. She’s been with him 10 minutes and she’s ready to label. Wow. I’m thinkin’ maybe they should preempt that question with some form of alcohol—a simple shot would suffice. “Here, drink this. Ok, I think your son has a condition that has no cure, will place a social stigma on him, and you will have to fight or pay out of pocket for every service he needs, possibly for the rest of his life. Now sign this document. Another shot? No problem.”

So I fail at the keeping it together part. Fingernails into the palms—not working. And the waterworks are beginning. And lord knows I LOVE crying in front of other people (I, thanks to my fair skin, am an ugly crier—red nose and eyes and splothches that pretty much stay with me for hours. Plus headaches if it’s a good cry—soooo not the thing I like to share with others, especially school psychologists and their generic box of tissues)

So that evaluation pretty much screwed up my entire day—no, my entire month. We had a “health” screening the following week , for which Ben was completely uncooperative. Honeslty, I was fairly prepared for that one—having been through enough hearing tests before, I had no doubt Ben would balk at the school issued headphones and not understand the instructions. Considering he will jump-up and run if the sponge-bob theme is heard three rooms away, I have no doubt the boy can hear. But I was still reeling from the quick label of the previous eval. I think, really, I still am. In the course of 20 minutes, my kid just got transferred to the back of the school like a bad secret. I mean, ok, I was dealing with self issues as well—was it something in my genetic make-up, or the fact that I was an older mother? I was struggling with infertility (still am) and it made me wonder if my quest to have another baby was some sort of need to prove that I could have a typical child (and not a yearning for swollen ankles or the need to be puked upon). But my own personal baggage aside, I knew right then and there that this label—while it would get him the services he needed, also put him into a class of people that others mock and belittle. I mean—a short bus, for chrissake. Who HASN’T heard a joke about it? And suddenly I needed to develop skin more durable than a bootleg alligator handbag, and a bulldog’s stance to face the battles I knew were coming my way.

No lizard scales yet, I’m afraid. I’m still trying to let the words and looks of others roll off my back. Just today I made a face at some lady who gave me the “you must be the worst mother in the world” look as my kid had a meltdown in the grocery store. According to some Autism coping website, I’m supposed to use that opportunity to enlighten others to the world of Autism. I don’t know—something tells me that lady didn’t give a rat’s ass—and I don’t think I she would have heard me through my son’s screams—lord knows the check-out girl had enough trouble.

So, next week, another eval and another person’s opinion. Professional opinion. I feel like I’ve been through the best and worst of them. Maybe I should take a flask, just in case. And two glasses—no need to forget my manners…

The Backstory

In order to write about the day-2-day with Ben, we need a little history...

I have been blessed with a pretty clairvoyant gut. It’s told me a lot of stuff over the years—not that I’ve chosen to listen to its nagging, but I must say, it’s never been wrong. Like, I knew i would marry my husband when i met him. I knew Ben was a boy before any test. But those were the good things--I usually had a problem listening to the stuff i didn't want to hear (although, in my defense, does ANYONE have an easy time hearing that?) Knowing something and acknowledging it are two totally different things. Example—back in the day, my gut was SCREAMING at me that my college boyfriend of umpteen years was cheatin’—but I didn’t wanna hear it, so I didn’t get the truth until it was too late, and fairly ugly. (kinda like the girls he was...oh never mind) You’d think that dramatic episode of my life would have been enough for my gut to smack me around and say, “hey! Listen, dumbass!” But ignorance can be bliss.

Yeah—I knew something was up. Sittin’ in the infernal hell that was Mommy & Me, listening to all the brilliant milestones that Rhonda McSuperMom’s brilliant child had on her brilliant birthday with her brilliant books and brilliant French vocabulary, wondering if assault and battery was forgiveable under a plea of insanity, I would look at my boy and just KNOW that he was different. And to use a favorite Temple Grandin quote—“Different, not less”.

Different. Like, he’d met almost every physical milestone one time or early. Ok—he’s a boy—they do that. He didn’t talk much. Again—a different set of junk calling the shots. The things that made me think were never BIG clues. When you read other blogs/testimonials/inspirational inanities, you hear about kids that don’t’ talk, don’t make eye contact, that are not affectionate, that line up their toys and spin wheels or propellers incessantly, that meltdown—and I don’t mean the typical toddler tantrum—I mean a full nuclear meltdown that lasts for hours over little things like a tag scratching them, or pistachio ice cream (although, that one I kinda understand). My boy didn’t fit that particular mold, and when questioned, our former pediatrician (yes former) would just tell me that speech wasn’t my son’s strong suit, and the proceed to ask me about potty training and if he’s been to a dentist yet and that I just need to keep talking to him. As if I were at home in a beret practicing mime techniques.

And he was talking. In his own way. Dada. Mama. Different kinds of trucks. His numbers to 20. Every shape in his shape puzzle—including hexagon and octagon. All the planets—including Pluto, which is still a planet in this house. The different parts of a drum kit. You get where I’m going here. He was blowing us away with the words he DID know, that we weren’t noticing the words he didn’t know. Those words he was using, by the way, were (and sometimes still are) rarely understood by others. They could be understood with a little context, and a few were very clear, but most of them were a jumbled mess. Example—“gwetu” meant blanket.

He looked us in the eye. He gave kisses and hugs. He pointed at things he wanted, and labeled them sometimes. He watched other kids and was amused by their antics. And he would even engage them occasionally—if by engage you mean running around bumping into other kids and laughing. Again—testicles are a totally different influence, and when I made eye contact on the playground, those moms of rambunctious boys would just laugh and wave off any apologies and offer up a juice box. Moms raising prissy little things? Well, let’s just say my son and I gave them something to talk about when they went down to the yogurt shop to introduce little Piper or Francis to pistachio flavored non-fat, sugar-free yogurt flavored with the extracts of stevia plants harvested under a full moon by native virgins in protected rainforests.

But there were the other things that made my gut scream “different!” He never called for me. After a nap, when he needed help, when he was scared. He would just walk or run to me if he needed me. Fairly pragmatic, if you think about it. But I was missing that little call: “mommy?” (he has since learned to ask others for me—which is a step in the right direction. But I won’t lie when I say I really yearn for that one) When he played with his cars or airplanes, he would bring it very close his eye—or get down on ground level and have it “drive by” his face at that close angle. He wouldn’t copy other’s actions. And when overwhelmed or overstimulated, he would either go into destructor mode (destroy everything in sight) or get “the beans”—a phrase I used once when he would start shaking his head back and forth in a “no” gesture. Sometimes he would spin—but that particular habit would come and go.

So I did what most parents did. I started researching crap on the internet. Crap being the operative word here. Of course I found websites that fed my fears, and promptly ignored them, and moved on to the ones that told me what I wanted to hear: he’s just a boy—they do things differently. “My kid did that, and now he’s a normal kid” testimonials. I sat on that for a while. I listened to that former pediatrician I mentioned. And the well-meaning friends who constantly gave me the “he’s a boy” argument. Except for one friend—she told me that it was her opinion that I should get him evaluated—that I stop listening to the doctor(also her kids’ former pediatrician) and get him to a speech therapist. That while he’s an awesome kid in all other aspects, he needs a boost. She was brave enough to say to me what other friends would not, because no one wants to be the heavy. (kinda like those friends who couldn’t tell me that previous boyfriend was playin’…) I'll never forget that--how brave she was. I no doubt owe her a few more martinis. She spoke, and my gut—that fabulously wise intestine told me to listen. And I did. We got the referrals and then the refusals, and all the other fun dance steps of the Insurance Industry Hoe-Down , (our first lesson in the two-step douchebag series that is insurance policy) and then decided to pay out of pocket to get him started. We got a referral from one of my husband’s co-workers and made the appointment for an evaluation at a private speech therapist. And my gut, for once, settled down.

She's told me a few other things since we started, that clairvoyant bowel of mine--some good some bad, but I'm listening now. This isn't just about teaching Ben to pay attention, you know...

To be continued: next--Evaluate This!