When "Normal-Enough"... Isn't


Image: Rasmus Thomsen / FreeDigitalPhotos.net
The Mouse left a comment on last week's column where she mentioned that her son's doctor and their province declared him "normal-enough." Which was not "enough" for her, and led her to pursue (and pay for) private occupational therapy for her child.

And I think I sprained something in my neck from nodding so hard at "normal-enough." That's so perfect. We've also been told that. And no, it's not enough for us, either.

Noah officially entered our country's Early Intervention program (EI) at 23 months old. By their third birthdays, children still receiving services through EI undergo transition testing to determine what they should continue to receive from the school district. 

We did not undergo transition testing, as Noah was declared "normal-enough" just three months before his third birthday.

Normal-enough on the basis of speech only. Normal-enough in that his articulation and grammar acquisition were still technically delayed, but he seemed likely to "catch up on his own." Normal-enough in that his myriad of sensory issues simply made him "quirky," but were nothing that would "impede his success in a mainstream preschool classroom." Normal-enough in that despite hundreds of red flags flying all over the place that his speech delay was just the tip of the developmental iceberg, we were told exactly what nervous, inexperienced parents want to hear: He's fine. He's cured. Now move along.

The next year he proceeded to give back every advancement he'd made during his time in Early Intervention and regressed in other areas too.

And it wasn't just that they were "wrong." It was that they also had different expectations about what was "fine" and "enough."

I'm still angry about it, about what happened (and didn't) in that crucial, critical year. I'm angry at "They," even though I know that They were good people who worked really hard and cared about what They did and the children They worked with and They made an easy mistake and missed what was really going on behind Noah's speech delay. They made a judgment call and compared him to dozens or hundreds of other kids who were very likely worse off. Look at Them, They said. Compared to Them, he's fine. He's normal-enough.

But I'm really glad I learned that lesson, that distinction: Some EI and special education services are only designed to get your child halfway there. Hooked onto the bottom rung of the ladder; the lowest common denominator. It's not anything anyone is doing wrong or anyone's fault...it's just what happens to overloaded, overworked systems.

I'm glad I learned that lesson by the time we had our first IEP meeting, where I once again met with hard-working, well-meaning women who cared deeply about their jobs...but who were honest about their limitations. A good dozen of our concerns were nicely lumped in the category of "We're Sympathetic, But We Can't Really Help You With That."

Noah's speech was, again, considered to be normal-enough, even though I felt that a lot of his behavior problems were in fact stemming from his inability to organize his thoughts into clear sentences and talk to other children. But the school district was adamant that he did not meet their standards for receiving speech therapy, even though we had multiple private evaluations that disagreed. The fact that he couldn't use a fork or a spoon was not academically relevant, though I knew he was already getting teased about it and lashing back at kids who mocked him. His motor-planning and coordination problems were not severe enough to cause regular falls down school steps, so therefore: normal-enough. So after wrangling everything we realistically could from the district, we hightailed it back to private therapy to plug the holes. He's just ... capable of so much MORE. So much more.

And honestly, if I could tell fellow special-needs parents one thing -- if I could grab the shoulders of every mother whose world has just been knocked askew by a scary new diagnosis and tell her just one thing -- it would be to never, ever stop believing in (and fighting for) the unlimited potential your child has for great and marvelous things. And sometimes that means looking at the expectations laid before you by the system and saying, "Nope. Not good enough."

autism, development & growth, developmental delays, language, learning, nursery school

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nonmember avatar jodifur

This post is just so...perfect.

nonmember avatar brandi

amen to that Amy! i'm so glad Noah is doing better in the private program that he's in so that he can reach his full and awesome potential!

Freela Freela

Excellent post, and something parents need to hear. I'm a mom who accepted the 'normal enough' assessment with my son for far too long. I was told that he had small motor skill issues and needed to practice those skills... having seen the kid build a K'nex city in about half an hour, I couldn't believe that manual dexterity was the reason why he struggled to print legibly. But I kept deferring to the teachers... partly out of a reluctance to be the 'in their face' mom, and partly because some part of me hoped so much that they were right. As it turns out- I was right, and they were wrong. My son has recently been diagnosed with several perceptual and motor learning disabilities and is now making great strides working with an occupational therapist. I am enormously proud of my son, who has managed to get all A's and B's while struggling along with an undiagnosed learning issue for four years of school. But I am disappointed that the school system let him down, and I am even more disappointed that I let the school system let him down even when I knew in my heart that they were missing the problem. I will NEVER accept 'normal enough' for my son again!

nonmember avatar Karen

I feel this way now. My son has speech and sensory issues (mild autism) and they tell me there isn't much more they can do for his sensory diet. I believe them until I see him mouthing mulch and cotton and freak out. Why is it so hard to find the answers?

nonmember avatar Kerry

Ah normal enough. That's the impression Early Intervention gave me when I had them come out twice to eveluate my son. He didn't qualify for their services and we're 4 months away from being able to contact our town's public school system for an evaluation so what do I do in the meantime?

My family all thinks I should let it go since EI said he's fine but I still feel like he's delayed and I don't want to wait until he starts preschool in the fall to find out he's not where he should be. I think I might look into a private clinic and evaluation.

It's just hard because my husband just doesn't get it. He thinks I want something to be wrong with our son because I keep obsessing over it. It's not that I want something to be wrong with him, I just want him to get the earliest possible help if he's even mildy behind. From what I read, most kids just don't grow out of developmental delays.

Amy, I've read your blog since Noah was first born and I lote it. I'm very excited about this new column you've taken on. I'll be back every week!

RanaA... RanaAurora

My son is FINALLY in speech therapy... during his first year of kindergarten. No one would do s$^# until now - when it's causing hin social problems. This post is so true. He was always doing "good enough" for everyone BUT me and now it's finally seen by others when it's bad enough to hurt HIM.

Steph... Stephensmom1214

Oh, my... I've been thinking about how we were let down by Early Intervention a LOT today. My son got his first progress report from his special education preschool, and while it shows progress in all areas (YAY!), I was reminded how very, VERY far we have to go. He was almost released from PT and OT 4 months before he turned 3, and then his therapist had a medical emergency that left us with NO PT/OT for the last 2 months before his birthday. Prior to that, she was only coming every 2-3 weeks. She said he would be fine, and would get the rest of the stuff on his own. Well guess what? I now have a 3+ year old who can't jump or walk up the stairs without turning sideways to hold on to the bannister with 2 hands, and who can't even go up or down one step without holding on to anything. And don't even get me started on the speech therapist.

But now, NOW, he has people who love him dearly, and work with him every. single. day at school. And he is making progress.

My SON is good enough for anyone, but he still has delays, and not doing anything about them is NOT good enough.

Amy, you have been such an inspiration to me. I will continue to follow Noah's (And delicious Ezra's) story until he begins his freshman year at some ivy league university (hopefully with my son following suit soon after). Thank you.

Aidan... AidansMomma

Thank you for shedding light on this issue!

nonmember avatar Mouse

(Getting over the pleasant shock of seeing myself quoted.) One of the reasons I love our current school district is that they looked at everything. They gave our son cognitive testing and pointed specifically to the gap between his intellect and other skills as a problem. And they've been willing to work in extra bits of intervention beyond what is technically required: he qualifies for speech for pronunciation (once he passed the halfway mark in kindergarten and still had certain problems), but sneak in work on pragmatics and social skills. I love being some place where they get that "normal-enough" is not good enough.

Julie... Julieryanevans

This is a great post, thank you!

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