by statia on August 3, 2010

I’m staring down at my son’s IEP.   The words, they paint a picture of my child.   But it’s like an artist misrepresented.

The Brigance – Early Preschool 2 – Assesses a child’s readiness skills or achievement: The test assesses skills such as  the child’s ability to label pictures, repeat sentences, match colors, use language and build blocks.

Score: 105   – A score of 100 falls in the 50th percentile.


Can name colors

Can match colors

Can sing the alphabet song

Repeats five syllable sentences

Points to “big” and “little” items

Names pictures of common items.

repeats sentences.

I feel as if I’m living in a dream world, where I’m trying to punch someone, but I have a force shield against my fist, only allowing it to go at such a slow speed, that any contact I make with someone, is surely going to be met with laughter.  It’s frustrating to say the least.   I try to explain to them over and over, that he’s echolalic.  It’s like I’m whispering over a loud radio.   Of course he repeats sentences. This is what he does.  This is my whole day.

Batelle Developmental inventory – 2 The batelle is a play-based, developmental inventory that assesses several skill sets. Adaptive behavior, social-personal skills, communication skills, motor skills and cognitive skills.  The average standard score is a 100, and the standard deviation is 15.  For the purposes of eligibility for special educations services, a score of 78 and below qualify a child to receive special education services.

Score: 122 – Advanced development range.

social-personal skills, communication skills.

Neither of these things were tested using this test.  Instead of subset of tests based on memory, reasoning and academic skills were used.   Of course, being the genius he is, he HOUSED that portion of the test.   The child remembers things from well over a year ago.   He knew his alphabet (upper and lower case letters) before he was two.  He knew his colors backwards and forwards.  Animals, shapes, you name it.    But if you asked him what he wanted, it was met with repeating the phrase or a blank stare.   This is not what’s called “being a supergenius.”  This is called atypical development.

After we received the PDD diagnosis (which I’m now realizing is like a loaded gun), the IU psychologist, the one who originally tested him the first time, went out to see him at camp and observe him.  As if the notes from the original test scores didn’t make me irate enough.

During the observation, Mini did now show behaviors associated with PDD.  He played next to the other children and with children.  He followed the teacher’s directions.  No self-stimulatory behaviors were seen.

Conclusion: In light of the school observation and CARS results (I did not fill out a CARS test), this psychologist will not diagnose Mini with PDD at this time.

Translation: Bitch is CRAAAAAAAAAAAZY.   Making stuff up to receive services.

I feel like the walls are closing in on me.  I want to scream.  ”HOW DO YOU NOT SEE WHAT I SEE?”

Before I had LG, I only had other kids to compare him to.  They say that you shouldn’t compare.  I say you absolutely should compare your kids, and your kids with other kids.  Yes, they ALL develop differently, but, averages are based on comparison.   He developed typically in so many ways, yet, he had a difference to him.  One that made me question my parenting on a regular basis.   I watch LG, and I see her do things and make connections.  I see her understand conceptual things.  This is something at nearly three and a half, the Mini still has trouble with.  Simple concepts.  Yet, by looking at his test scores, you’d never know.

I have no worries about LG.  She is as typical as they come.  Something that any spectrum parent will tell you, is a huge relief.  Prior to her birth and in her early days, I carried more worry and anxiety than I ever have.   If I could possibly handle it, I would have a million more babies, and kids, but I don’t want anymore, because I just don’t want to take that chance again.   I don’t want to revisit the dark days for anything.

That’s not to say I haven’t accepted what we’ve been given.  I accept my son as he is.  But he is a child that needs some extra help.   Our diagnosis seems to be making things more difficult, when really it should have been making our lives just a tad easier.   But apparently, he is confined by a strict set of characteristics that, according to them, are associated with PDD.  And apparently, he needs to have every single one, and be exactly like every child with a spectrum disorder.



Stacia August 3, 2010 at 1:33 pm

I understand those dark days of worry and anxiety, and I’m glad you made it through them. I hope you find a counselor or psychologist who understands the idea of a spectrum, wherein kids fall any and every place along it, instead of those who put Mini into the slot they think he should fit into. I can only imagine how frustrating that is.

Erin August 3, 2010 at 2:40 pm

Was it the school psychologist who wrote that? Because when I met our school psychologist, before she even said hello she yelled “THIS CHILD DOES NOT HAVE AUTISM! WHAT ARE YOU THINKING?”

Can you believe that? Needless to say she has not been invited to any subsequent meetings. In fact, I made sure she has nothing to do with C ever again.

statia August 3, 2010 at 4:51 pm

I seriously wonder what the hell kind of training these psychologists have. The one that did his eval was older, and I’m sure she probably has certain criteria embedded in her brain. Anyone with half a brain knows that a. even spectrum kids are different, and b. the characteristics that describe a person on the spectrum aren’t what they used to be.

Veronica August 3, 2010 at 7:04 pm

YES! Oh god yes. We’re having Amy assessed by IE at the moment, because she is atypical.

So far, testing has shown that she is incredibly intelligent, can identify animals/colours/things that are alike/shapes. They think at the moment that it’s just a matter of teaching her how to use language in a social setting.

I am certain however, that we’ve got more going on. She’s not autistic, I don’t think, but she’s atypical for sure. Especially when I’ve got Isaac to compare to and he’s just so TYPICAL.

Tether. End of it.


Pete August 4, 2010 at 7:21 am

Back when we were going through a lot of what you are, a helpful psychiatrist that’s since become a family friend told me that there’s two kinds of PDD diagnosis: The actual pervasive developmental disorders that fit a broad spectrum of unclassifiable kids, and the other kind: Psychiatric Differment Diagnosis.

You’ll remember (probably) when I went through this stuff with Cameron, and I can honestly tell you that while there is a set of “criteria” these doctors look at, how the criteria are interpreted are a completely different set of steak knives. Cameron is a unique kid. He’s not autistic, despite what the first doctor we saw said. He’s not mentally handicapped like the second thought. He’s got a tinge of ADHD punctuated by an overactive imagination that needs a bit of feeding to move him toward his goals.

Just remember: Just like the kid is going to change between now and two minutes from now, so too will his diagnosis. What they call PDD now may have it’s own, new classification, since PDD tends to be on the generic side of a diagnosis, a broad generalization rather than a pinpointing like ADHD. And even then, it may not be entirely accurate. It’s not like a appendicitis or gastritis. The symptoms are so fluid in this field that doctors are still stumbling around for a cause and often times the doctors with the loudest mouths (Dr. Wakefield for one) getting the most attention and the most credence for their opinions.

Remember that YOU know your child best. If you don’t get the diagnosis that fits your child, tell the psychiatrist to stuff it. If you have an older psychiatrist, you’re not going to get a fair shake, guaranteed. You need someone younger than 50 who specializes in nothing but children and especially children with fluid spectrum issues. Otherwise, you’re going to have nothing but frustration.

Above all else: If you are paired with a diagnosis you don’t believe, find an advocacy group. You — if you ask — can have an advocate at any and all meetings to help fight for your rights. These are people who are detached enough from your child not to have any “love interference” involved, and are there to be used to fight for parental rights when it comes to your child. Do your research, and you’ll find someone suitable.

Good luck. It’s all bullshit, and most doctors don’t know their asses from a hole in Freud’s backside. It’s a struggle and painful and sucks a whole bag of dicks.

Mrs.Mayhem August 4, 2010 at 10:18 am

I’m sorry for your struggle. My hard of hearing son has had an IEP his entire life. One thing that we had been told from the beginning was to be grateful that his hearing test results provided concrete proof of his need for services. And even with that concrete proof, the school system still has provided the minimum. My husband and I eventually chose to find our own services for him and pay for them out of pocket.

I wish you luck. There are many people who can relate to your experiences. IEPs are notorious for providing inadequate services. The entire situation stinks. Remember that you are your child’s advocate and you don’t have to sign/agree with the IEP.

Tommie August 4, 2010 at 3:57 pm

Oooh, on the comparison of siblings…I couldn’t agree more. My older, typical daughter, yes, crawled, walked, talked early but she was so very, very normal.

And her little sister just wasn’t. And I knew it, even when she was just four months old. But the doctors fought and fought with me, treating me like a neurotic first-time mom, worried that her baybeee wasn’t doing what she was supposed to be doing.

This year, Olivia’s IEP states that we’re homeschooling her for preschool. Yeah, it actually says that. Because she got nothing out of her previous year in the special-ed preschool and the physical therapist employed by the school is useless.

I get you, Statia. I know how frustrating it is to deal with the professionals who think they know about your child after watching him for five minutes than you do after living with him for three plus years.

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