Memory Cards
Let Your Guilt Flag Fly

Oh, just...BAH

First, the insanity report: I took both boys to the doctor's office today for check-ups. Approximately seven hours later I emerged from the little exam room, only to smack face-first into a wall, probably from a combination of plunging blood sugar* and the disorientation that comes right after one loses one's soul, as mine flew out the window sometime around the moment right after both boys had their meaty thighs stabbed with needles and started screeeeeeeeeeaming and screeeeeeeeeeeeeeaming and I figured WHAT THE HELL, LET'S BREAK SOME FACIAL BONES WHILE WE'RE AT IT.

*My plans to eat lunch before the appointment** were derailed by a leaking poopy diaper, of the Turn This Car Around And Head Home, Oh My Hell Variety. I grabbed a half-empty and fully-stale bag of chocolate graham cracker bears in a panic since I did That Thing you're never supposed to do, That Thing Where You Leave Your Toddler In The Car While You Run Inside To Change The Baby's Diaper Real Quick But Then The Baby Pees On His Head And It All Takes Much Longer Than You Planned, but then Noah ended up demanding most of the chocolate graham cracker bears, which I served to him in a plastic snack cup I found under the driver's seat. Man, I hadn't seen that snack cup in like, a good six months.

**The appointment was at 1:45, or so I was told by our appointment card AND when they called to confirm yesterday, which was when I was also reminded to arrive 15 minutes early. So I did. At 1:30. When I was told that no, our appointment was at 2:00, but you know, they sometimes bump the appointment time up by 15 minutes to ensure that you do truly arrive 15 minutes early. Good luck trying to point out the flaw in that math there, for future reference. Just sit the fuck down and watch PBS Sprout for a full half hour while dreaming of the bagel place across the street, but WHATEVER, you have TWO CHILDREN NOW***, running across the street for a bagel will take 45 minutes and two additional wardrobe changes, at least.

***I had a lot more getting-out-of-the-house-related whining things to write about, but as we were leaving I watched a woman get out of the elevator with her three-year-old daughter and newborn twins. That made me realize that hey! I should totally trying shutting up every once in awhile.

Second, the Ezra report. He now weighs 10 pounds, 7 ounces and is 23 inches long. 75th percentile for weight, 90th for height. 100th percentile for absolute perfection.

Third, the Noah report.

Oh, Noah.

You have my permission to skip the next bit,  particularly if half-formed, reactionary tantrums of misplaced rage are not entirely your thing. My anger and sorrow are kind of still shooting out all over the place, probably missing the proper targets, fizzling out like my hair is made of stray electrical wires.

Noah's speech and sensory delays -- you know, the ones our county told us were All Good, All Fixed, Bye-Bye Now! back in June -- now appear to be bordering on "severe."

My final conversations with Early Intervention went something like this:

"I'm still REALLY concerned about his articulation. He's still REALLY hard to understand."

"Pish! And posh! His pronounciation at the single-word level is just fine! His combinations will catch up with practice. Calm down."

"Okay, so...what about the sensory stuff?"

"Mere quirks!"

"Should I be concerned that he can't drink from a cup? That he can't use a fork or a spoon? That he still screams when you brush his teeth or touch his ears? That he won't eat anything other than bread? That he'll go a week without pooping, just because he doesn't want to?

"Look...just...whatever, okay? He's not autistic. It's not apraxia. It's not nearly as terrible as the terrible things we deal with everyday. Can you just sign this paper so we can free up some damn resources already?"

Obviously, today's appointment was just with a pediatrician. It wasn't a formal evaluation or anything. But, still. I trust our pediatrician. I saw the relief in her eyes when I brought up Noah's speech and oral-motor issues first. I saw that look of, "Oh, good. I don't have to be the one to break it to her."

A stranger or non-parent should be able to understand about 75% of a three-year-old child's speech. That's honestly a more than I can understand. I translate constantly for his preschool teachers, and our doctor admitted she was catching maybe about 25% of what he was saying.

His reaction to having his ears examined was...extreme, so say the least. Violent. Thrashing. The very reason, I admitted with shame, that I haven't even considered taking him to the dentist yet. I can't even IMAGINE taking him to the dentist yet.

One week ago, to the day, Noah drank out of a cup for the first time. A cup! Without a spout or a straw! We'd been sending in plastic straws to preschool for months, once it became clear that Noah was willing to let himself dehydrate rather than take a sip out of a small plastic cup like everybody else.

"See?" I told myself last week. "All good! He was just being stubborn."

The fact is that I've seen one-year-olds handle an open cup with more skill than Noah. Stubborness may be half the battle, but the other half of the battle is...God, I don't even know.

Our pediatrician is recommending we seek a private evaluation and therapy this time -- that again, Noah is probably a little too borderline to qualify for the level of service he really needs through the county. (We'd be dealing with the school district this time, now that Noah is three, which does indeed have a higher bar for needs-based services, and also would mean Noah would be officially "labeled" as special needs in his permanent school record, or something. I forget. Early Intervention covered all of that the week AFTER they told us Noah was ready to graduate, so...yeah. I probably spent that session counting ceiling tiles or doodling "Mrs. Zac Efron" or something on my binder.)

But it's crystal clear now -- and I knew it but I didn't know it or maybe I just didn't want to know it -- the progress we achieved this past year was good but not enough, and we're not out of the woods yet. Wow. That's an exhausting thought, especially when you consider "four straight hours of sleep" downright luxurious these days.

So...I need to check our insurance, cross-check therapist recommendations with our insurance, make appointments for evaluations, take Noah to an audiologist, dig out all our Early Intervention reports and assessments and basically get ready to start everything all over again. And try to stop beating myself up too badly for letting things end at all, in the first place. For wanting so badly to believe that things were fine and fixed and over, for constantly giving things "one more month" and "a little more time" in hopes that it would all work out on its own, and for -- goddamn it -- letting Noah down and not getting him the help he needed sooner.



Oh goodness Amy.... I totally get how you're feeling. Doesn't mean it's right because you are an awesome mom--you did EI and all of's the so called "experts" who let you and Noah down.
Where to start? My oldest is 10, and last year he was dx'd with Aspergers Syndrome (he also has ADHD which masked alot of the AS symptoms) ...he has sensory issues and speech issues as well. Obviously we missed out on the EI with him....however, he has an IEP at school now (4th grade) and is getting the help he needs with speech therapy and OT. Our youngest is almost 3. He's hard to understand and doesn't say a whole lot. He's been evaluated by EI for speech delays-they deemed him to not have any significant delays...I didn't agree with them. I will admit that his vocabulary has expanded alot since the eval, but still isn't really understandable by most people. Since EI wouldn't help, I contacted our school district's Parent's as Teachers. One of their people comes out once a month and "plays" with him for about an hour or so. They play games and do puzzles that help her see where he's at developmentally. And, since we've been working with them, he will be able to have an evaluation in April that will determine if he's eligible for the Early Childhood Development Center that the district has.
Does your school district offer a Parent's as Teacher's group? Or have an Early Childhood Development Center? Since Noah's 3, he is (under IDEA) eligible for these services (or whatever your school district offers that is similiar)'s the law.
Feel free to email me or visit my blog.....I would be more than willing to share things that we've learned/discovered along our journey with ASD and Sensory issues and LD's....

Most importantly, you are NOT a bad parent. You are doing exactly what needs to be done.....


Oh, sweetie. I know it doesn't help really coming from a stranger, but you're doing a damn good job as a mom. HUGS.

Nancy R

Yeah, you'd think the early intervention people would have given you other resources to check into if you were still wanting more after they declared him 'graduated'.

Just look at it as having taken a break (WE WERE ON A BREAK! says Ross) so your family could adjust to the arrival of the new baby. Now, it's time to start up again.

And next time, maybe sucker someone into going with you to the appointment so you can tag-team kids for shots. Poor babies...and mommy.


You were let down by those Early Intervention people but you have not - NOT - let Noah down. I had a baby in January and started EI for my son in February and hoo boy was it hard! Things are better now, you will get through it, I promise! You will all be the better for it. If you have been dropping your Signing Time viewing, maybe start back up again? Hang in there, Sister, it will get better I SWEAR.


You are so not letting Noah down in any way. You're going to be his greatest source of encouragement and advocate. Trust me, I know you're tired and worn down and discouraged some days...or most days...but you are an awesome mom and don't ever let yourself forget it.


Gosh, don't worry about the label! If the school district services are good, then I'd totally use them. Of course, if they suck, then that's another story! When my daughter was being diagnosed with ADHD, I worried about her being labeled, but now I look back and wonder what I thought was bad about it? Frankly, I think all kids should be labeled! It's shame that a label that just says "Noah" or "Jane" doesn't carry the same weight as one that says "SPD" or "Learning disability" or "Autism" or "Gifted" or whatever. Then all kids could get the special individualized education they desreve.

What a label gets you are fabulous things such as two extra meetings with the school staff every year. Also, an extra teacher (special ed person) who knows and takes an interest in your child. And if Noah does need special accomodations later, like maybe a special chair, or bigger pencils, or longer time on tests if he is a slow printer, or whatever, then his having a label will make this process automatic and official with written documentation of what will he needs. Wouldn't it be great if all kids could get that?

I try to go to the school with an open "let's all work as a team to do what's best for my kid" attitude. That includes full disclosure of what diagnoses she has so that they can understand what's going on and we can really deal with it. Best to at least get started with the idea that the school system is your friend.

Good luck!

Plano Mom

Mom guilt. It's the worst. Feel it, embrace it for about 5 seconds, then let it go... it will come back, but each time it will get better, especially as Noah improves. Keep up the fight, sistah!

Lea White

Hi there!

I often read, but don't always respond and I just want to say hugs to you! You are doing a great job!


Oh and once Noah is all set up in his therapies or whatever, you can find a special needs dentist. I did and it really helped my son's first visit go - well, it was hard, but at least I felt like they were used to it!


For what it's worth, I don't think you let Noah down. You're doing what you have to do and you're going to get it figured out. Huge hugs to you.


I sometimes feel that you're writing my story when you write about this journey of evaluations, therapies and interventions Noah has been/is on. My son was diagnosed at 14 months with a multitude of delays and sensory "issues". We loved EI and he made amazing progress (sound familiar?) And then he turned 3 and the school system sucked him in and promptly spit him back out again. Yay! he's all better! After a couple months in denial I realized even though he was better, so so much better than he had been, he was no where near typical for his age. I needed our peditrician to kick me in the pants too. I left that appt(in which all I could do was nod and make noises of acquiesence b/c after hearing the word "autistic" I could no longer speak) and went straight to my Mom's so I could sob into her shoulder before I was able to plan our next step. I spent a year shuttling him to PT, OT, and speech through a local rehab b/c an appt with a neaurologist and dev pediatrician took nine frigging months! Finally just before he turned 4 the school system re-evaled him and lo and behold! he qualified for 4 full days of preschool. He did have an IEP that took him through 1st grade (secretly I wish he still had's so hard to get any accomodations unless the school system is mandated to do it). I didn't mind the Special Ed label. It got him the services he needed.

I know the heartache and guilt you write about...I muddled through all that myself. Parenting is so difficult and when your child is "quirky" it can be doubly so. Noah has a Mommy who is not afraid to face the truth and do what needs to be done. He's going to be fine. Don't be afraid to speak your mind and ask questions. Get an advocate if you need to. Good luck with all this.


Mommy instinct is not all that it's cracked up to be. Really. I'm about to have my fourth and I screw up all the time. Just yesterday my littlest was crying and she's been super crabby lately, so even though she was crying that "I'm in REAL pain." cry, I ignored her. When I did turn around there was blood everywhere. She had busted her lip and her tongue.

I know that is a minor example, but I could give you 1,000 more. Like the congenitally defective tear duct I never mentioned to the pediatrician until my oldest was 2. That resulted in 4 surgeries and perhaps more down the line. And the symptom was totally obvious too, so there was no excuse.

The best thing about children is that they respond to help. So, you'll get him help and when he is a sassy-mouthed teenager you might even think you wished you hadn't.


Ditto all of the supportive comments above. You're a great mom, and you haven't let Noah down.


I have been reading your blog for years now. I have always wanted to write to you to express my concern for Noah, but I always felt like that would be too intrusive or whatever. Basically, good friends of ours have a little boy who was diagnosed with ALS a few years ago. Everything that you write about Noah is exactly how their little boy, Finn, behaves. Major speech delay, organizing toys in particular ways, extremely sensitive to certain touches, sounds, situations, etc. I feel bad even for suggesting this to you, but I just felt I should mention that Noah's personality completely mirrors Finn's and you might want to consider getting him tested for ALS. You even may have already, so I'm sorry if I sound like I'm telling you what you should do. I just didn't feel right keeping this to myself in case it might truly help. Good luck with everything and please keep us updated!

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