Thursday, June 24, 2010

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…


Julann said...

I love this!!!! As a mother of a "difficult" four year old- I feel you with the great looks as your child spirals out of your control and you just wonder when will this end and will it be better next time? I pray every time we go to the grocery store, to the pharmacy, and most of all to the doctor- a place where I should be going for "help" with all of this! When he flipped out at the nurse during his flu shot, she left the room with a flabbergasted "well..." and as I left the office, I saw her actually gossiping with another nurse about my son in the hallway!!!! Both looked shocked and appalled! Thank you for the support- we have spent a week preparing for this office visit- it went as well as I expected and I am so glad that a pediatricians' office is so happy and able to help and cope with the situation! It's funny how places set up to help children, like child psychologists, pediatricians, and learning resource centers are some of the worst places to bring a child with special needs.

This side of Typical said...

thnx Julann! And i agree about the doctor's office. We actually left his previous doctor, for other reasons--but their attitude toward my "uncooperative" child definitely sealed the deal. We just visited his new doctor, and both staff and doctor were accepting and lovely!

Anonymous said...

I still think that school psychologist is a quack. She didn't do near enough "evaluating" to make an informed diagnosis. This is coming from my professional side in the mental health world and my knowledge of psych testing and evals. If the diagnosis does get him needed services, great. But, everything I know about ASD tells me it's not right. He doesn't present at all like any of my former clients that ranged from Autism, Pervasive Developmental Disorder, and Asperger's. Speaking as your friend, you know I love you guys and I'd be right there with you to shoulder some of those stares and give all those people a what-for for the nasty looks if I could. I'm passing this on to Auntie Judy, she's my personal Autism expert. :D Maybe she can meet him the next time she's in town.

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