34.5 Weeks

Apple Store of My Eye


I had to ask what, exactly, a "word retrieval disorder" meant, when we met with the child psychologist to go over the action-packed, 25-page report on Noah's evaluation. I understood most of what was in there -- ADHD, auditory processing, some too-early-to-tell red flags for dyslexia for us to "keep an eye on" -- but the word retrieval bit was a new one. 

Was it like apraxia? I asked.

No, she said. That's an inability to form words. This is more about plucking the right word from your brain soup. Basically having it right there on the tip of your tongue, but unable to remember it, or only coming up with words that are similar in concept, but not quite right. 

For example: saying shovel when you mean hammer, bicycle for motorcycle, or in a unique-to-Noah coping mechanism the psychologist noted, expanding a simple sentence to include a ton of extra, early "filler" words, thus buying himself more time to come up with the more difficult verbs and nouns that would come later. 

That was really fascinating to see, she said. He's already very aware of what's difficult for him, and is coming up with his own accomodations in lot of those areas. That's a very, very good thing. 


The suggested school-based accomodations for a word retrieval problem include providing Noah with a "word bank" to choose from during fill-in-the-blank tests, or allow him to write expanded responses instead of counting on him to remember a single specific word, and to use lots of mnemonic devices and categorization exercises to help with his word-memory skills. 

I couldn't help but think that man, we are getting crazy obscure here, with the stuff you can now officially label as a "disorder." I mean, really:

Picture 2


Last night, after dinner, Jason suggested we all head to the Apple store to check out their selection of educational games, to see if they included some age-appropriate typing or keyboarding skills. (This was another accomodation the psychologist recommended, to teach Noah to type as a less-frustrating alternative to handwriting.) Noah demanded clarification, probably thinking that we wanted to take him to a fruit store, which would have to be one of the WORST IDEAS EVER, unless we were talking bananas. Did the apple store also have bananas? 

No, we told him. The computer store. The one with the Dora games you like to play. 

Oh, okay, he nodded. I like the computer store.

A few minutes later we hadn't left yet, and Noah was getting impatient. 

Are we going to the...

That's as far as he got before his face contorted and the tears started. 

The word! I can't say the word! My voice doesn't remember that word! Naughty voice, why won't you remember!

Then he balled up his fist and started punching himself in the throat. 

Holy shit, I thought. Stop!

Computer, I said, as soothingly as I could. The computer store.

He repeated it and immediately calmed down, taking big deep breaths. I don't like when my voice forgets the words. It makes me angry. 

Of course it does, I said. It's frustrating. Everybody's voice forgets the words sometimes, though. 

We decided to go to the fruit store another time. We went to the playground instead. 




He's such an amazing kid. Truly. He will get there. You all will.


poor kid. I grew up with selective mutism (basically I became mute in certain situations, especially when I needed to defend myself) and it sucks. But he's a bright boy and he'll find ways around it.


Oh, Noah. That made my heart hurt.


Ohhhh, "naughty voice" breaks my heart. You're a smart, funny, awesome kid, Noah, and the Internet is proud of you. Your mom's ok too, I guess. :)


Gah, I'm with Noah. That is SO frustrating. I used to take Topamax for migraines - and that is, no lie, listed as a side effect and is a very common one. And I wanted to cry every time it happened to me. I quit the medicine when I couldn't remember the word ladybug and had to resort to "they're black with red spots!" But, the playground heals all wounds I hear.

Chad Lembree

Just a quick story:

I am 39 years old, and suffer from severe migrains. I have to take daily medicine for it, and have it pretty much under control.

About 2 years ago, my doctor changed my meds to a drug called Topamax. Within about 3 weeks, I started to experience a side effect called "Poor Word Choice". This side effect caused me to not be able to remember words. I knew that there was a word.... I knew that I knew the word.... I just couldn't "find" it.

I would be in the middle of a sentence: "I'm going to go out side and walk the...." I wouldn't be able to remember the word "dog".

This is an actual example.

I feel for Noah. I know how it is.

Give him a hug from me.


As a parent some days life is trying to kill us. Hang in there.


I am an adult and I swear I have this. I feel like I'm bright, but in the workplace this has gotten me into sticky situations. I can "see" what I want to say, but it takes me a while to get the right word out of my mouth. It's very frustrating. Noah will do great with your love and support.


You're doing such a great job in figuring out what the issues are, so that you can address them.

BBC has a good typing program that my son has had fun with:

Cheryl S.

First, poor Noah! Everyone does this occasionally and knows how frustrating it is!

But my first thought when reading this was "OMG! This sounds like Jessica!"

I always figured maybe her brain was going too fast for her mouth. Like Noah, she'll either get frustrated and say "forget it" and then won't try to finish. Or she does what my mom calls "scatting" (Like jazz singers do). She puts in extra (sometimes nonsense) words while she's trying to figure out what she's trying to say! Wow. I'm going to have to look this up now!


Damn he's smart. I know you've said you don't feel amazing when you can't fix it, and that other parents would do the same for their kids, and you're right, we would.

But I don't have to do that for my kids, and you do have to, and you do DO it, and I think you're wonderful, even though I'd try to be doing the same in your situation. You're amazing. I'm glad you love your kids, and I'm glad you tell us about it. It gives me something to look forward to every day.


when i first started reading this post i was thinking omg i do that all the time!! and i use filler words etc only to realize (after it too late) that i used the wrong word or whatever and I was going to joke about it but totally not appropriate since you are talking about your son's disorder and THEN you wrote that you do it too and I was like ok then I'm not crazy. Everyone does it. And i'm going to do it again here but it's (not sad but whatever THAT word is) that your son knows he does it and gets super frustrated. yes noah we all do it, i feel for him. it's hard to see little kids grow up and have to deal with stupid stuff like this...


My sister has had a brain disorder for most of her life (she's 20 now) and the largest "obvious" side effect.

It was really hard for her at restaurants: "Anna do you want a salad" "What's that?" "Lettuce with dressing." - something very simple turns into not understanding or being able to comprehend the world lettuce or salad.

It's sad for all parties involved but luckily Anna was able to get some relief when she was able to control her petit mal seizures.

I hope Noah is able to find some relief too!


Haha.. oh words. Oh words while pregnant. I was talking to my husband in the car the other day and I totally failed to come up with some word like, soap or something stupid.

After trying, and failing, I was like, Babe! I don't know the word! I'm so tired of this goddamn aphemia! Or lethologica! Whatever!

Really, self? Really?!

bethany actually

Amy, I have to say I think your reaction was exactly right. Maybe it would help Noah to see that you and Jason forget words sometimes too? You know, how they say it's good for kids to see their parents make mistakes and apologize for them, so they don't grow up thinking all adults are perfect and getting ulcers trying to hold themselves to an imaginary perfect standard? Maybe if you made a point of thinking out loud in front of Noah when you aren't able to access a word you want, it would help him see that is really IS something that happens to everyone.

Heather R

I know what you mean about labeling everything a "disorder". I am a speech-language pathologist (or I was in a former life...now I am a SAHM) and I remember the whole testing process and coming up with a label for something was sometimes not very black and white. For me, if a child tested within the average range in several areas, but scored statistically below the average range in just one subtest, I might say he had a "weakness" that that area. OR if the child clearly had an "expressive language disorder" which was based on more than one subtest as well as the overall-score well below the average range, I would say the child had an expressive language disorder characterized by difficulties in the following areas: x, y, z. Some of the labeling of these disorders is sort of up to the clinician. It's just a way of explaining what the child has trouble with if there isn't one overall diagnosis that explains it all. I have a horrible time with word retrieval, by the way!! I mean, I think you might even call it a disorder, and look at me, I have a Master's Degree!


Oh Lord. My heart just broke.


Even though I have never met you or your husband, I'm merely a follower of your blog, I do know how fortunate your kids are to have the two of you as parents.


I take a different med than Chad, but it has the same impact on me. It is even worse if I'm tired (something to perhaps observe with Noah? - not trying to be an asshat!) and I cannot ever express to people around me how frustrating it is to have happen. I think the keyboard is an excellent option - it seems like it uses a differing (slightly) part of my brain, and I don't have to work *quite* as hard to get the word I'm looking for at that moment. Keep us posted on how typing, etc impacts his retrieval.


Oh, little guy, I wish I could help.

My cousin consistenly pulls a few words out of the "word bank" wrong - and has for YEARS. The funniest being "marshmallow" instead of "mushroom" - she of course doesn't think this is funny at ALL.


Or, consistently. Sorry for the typo!


I have a word retrieval disorder. It's not unlike the tip of the tongue effect, but it's CONSTANT. I forget all words, words as simple as chair. I tend to describe what I mean when I cannot remember the word. Fortunately, it doesn't really translate to writing. I am a great writer, a graduate student even, but I am a poor verbal communicator. I've come to accept it, though it sucks. Also, yes, fill in the blank was IMPOSSIBLE for me without a word list. I tended to search my tests to find the word I wanted if a list was not available.


My therapist told me it was really common with ADHD (which I have, adult diagnosed). For me, what helps in practice is to mime the word I want. It doesn't necessarily make the word come to my mouth faster, but if I'm talking with people they often can figure out what I'm meaning and suggest the right word. I've actually had coworkers get "dress" from me moving my hands down like a halter top and then making diagonal lines out from my hips as I paused, unable to think of the word. It can seem really awkward at first, and thankfully it doesn't seem to happen when I'm in "performance" mode (just conversation where I have to think and not just perform), but acting out the word or pointing at what I mean has helped so much.

If it helps, I'm 26 and gainfully employed and about to start a new job where once a month I'll be interviewed on tv about animals. Really hoping the streak of it never happening during a performance sticks!


I can only imagine how frustrating all this can be to such a bright and insightful little boy. You're an amazing kid, Noah. Hang in there!


I'm another one on Topamax. So frustrating. But it's so much better than your head pounding day in and day out!

So I get it Noah...it's frustrating. Hang in there!


38 years old and I do it, too :) Mine is also a side effect from medication, not Topamax. I've learned to laugh at mine because I substitute words all the time. Mine make sense in a way, while SO not the right word. For instance:

"I need to take the clothes out of the oven." (meaning dryer) It's hot and it dries things....The dryer is the clothes oven. :)

Loretta S.

Wow that was intense - hang in there - if anyone can help Noah, it's you and Jason.


I, too, take Topamax, and have difficulty with word retrieval. I can't imagine being Noah's age, though, and not understanding why. As a teacher, thank you for this glimpse into many of my students who also struggle with this. I don't know why, but until now I've never made the connection. Perhaps in the future I can explain to my fellow teachers what it really means and how frustrating it can be.

I honestly didn't know that replacing a word fell into this same category. Strangely enough, mine most often manifests itself when I'm typing. I know what I want to write and what keys to use, but for whatever reason my fingers keep typing a different word. I never understood why.

For me, all of this is a small price to pay so that I'm not suffering chronic and severe migraines. It is annoying, but I've learned, as Noah is, to compensate.


Oh, how frustrating for Noah. I've taught a few kids that struggle with finding the right word, and it's interesting to see how they all cope with it differently. I haven't seen anyone punch their own throat, but then again I'd hope my middle school kids have developed more sophisticated coping skills by the time they are 12!

Also, I had no idea there were meds that could cause that problem. It is completely amazing to me that there are chemicals that are magical enough to stop migraines but also pick on that poor little part of the brain that chooses words. It blows my mind.


Oh that makes my heart hurt. For my daughter, for myself. My daughter is on the spectrum... and though becoming verbal - often can't find the words or doesn't yet have the words. I, because of medication... have lost many, often ones that were RIGHT THERE. And it's frustrating.... but you know? It gives you empathy.


As a mom that made me tear up. It's so hard when we cant just "fix it" for them. *hugs*


uh ! uh! I will soon be a mother and....
I still can't picture myself in all this!! :)


My oldest sister has a word retrieval disorder. When she was little my parents were told that at any given moment she could access about 1/3 of her vocabulary. They were also told that the best "treatment" was just to beef up her vocabulary as much as possible. I hope Noah's teachers and therapists had something a little "more" in mind but even if they don't, well, my sister has a masters degree in social work and has been working as a social worker for more than 20 years now so it doesn't seem to have held her back :)


Your reaction was spot on, in my opinion. Often you may feel like you are floundering in all of this but I think you guys are doing a wonderful job. Noah is lucky to have you.


I need you to know how important and wonderful your advocacy and empathy is for Noah. I am a life long anxiety sufferer. I have been diagnosed officially with Generalized Anxiety Disorder for over 10 years, now, but I am sure that I have living with this since birth. When I was a toddler, I can remember not feeling like I could do something or go somewhere, even though I KNEW nothing bad would happen. I can remember being as young as your boys and trying to explain why I was panicked, a yet not being able to. My parents, who loved me dearly, were told to simply push me into experiences, and I would adapt. They did there best, and I think in the 80's people weren't as aware as they are today of such issues. What I know is, your compassion as parents, and willingness to learn about your sons issues can only benefit him, and for that? I give you heartfelt thanks.

Walkingborder (Karen)

Long time reader, first time commenter. Hi!

So this:

"Then he balled up his fist and started punching himself in the throat.

Holy shit, I thought. Stop!"

My son (7 now, 6 at the time) did this a lot too. Not the throat, but the same general self physical abuse. Not too long after that, I got him into therapy (there is a bit more to it than that) and he was diagnosed with ADHD. And your son, as you know, was just diagnosed with ADHD. Anyway, from what I've read, the whole self hitting thing can be common for kids with ADHD. So well... just thought you should know.

Oh, and while alarming, in itself it isn't too very much to worry about. As he learns skills to sort through his thoughts and feelings and whatnot, it'll stop. And well, those skills are coming.

It's not so unlike a 2 year old who bangs his head against a table or wall when upset. (Same son did that too.) It's a coping mechanism. That's all. And it's eventually outgrown.

Do mention it to his team, but don't stress over it too much. Lord knows you have enough on your plate.


I'm a speech therapist and this breaks my heart. Probably why I'm a speech therapist...


Noah and I have a frighteningly similar set of mental deals happening. It makes me happy that he's getting so much help from so many people at school.

The fancy name for this particular one is "lethologica". It is my favourite word.

By the way, even with chronic, unrelenting "WHATS THAT WORD?" I managed to get a degree in linguistics and get certified to translate 5 languages. :) It's frustrating, but something that quickly becomes a stupid quirk once you can conquer more grammar and vocabulary. And maybe google.


I have this problem, too, and it's also aggravated by Topamax. It feels like there's a wall in my brain and I have to rewire around it.

Listing off words is a great help to me, but sometimes I have to just leave it for later and I'll think of it in 20 minutes or the next day.

It makes me angry, too. :/


Working with kids has shown me that all kids, even the ones without a "label" for it, have such a hard time finding the right words to describe what they want to say. I know how frustrated I get and I've had 26 years of experience!


You are a good mother. I know it is hard, but keep up the good work.


As soon as I started to read this my right hand shot up and I started flapping it around, as I do constantly. Would you go wash the...um,thing you drive around in...CAR! I've always done it. My kids and husband shout out clues now..we make it into a game. And I taught college for 20 years...it actually helped students because they would come up with the word for me.


I'm sorry things are hard for Noah right now. You seem to be helping him through it wonderfully though.


Ugh. I have recently started to forget words. It's getting worrisome because I have an IEP kid that I need to be "there for". I need to help him. I can't be f*&#ing around with my crap right now. You are an amazing mom and I can't wait to see the pics of the new little boy.


Amy, I have stated several times in comments that I think you are not getting enough or the right kind of help for Noah's issues. That you ignore me is fine, but your understanding of word retrieval issues based on what the tester told you is putting up huge red flags for me. My daughter, who is on the spectrum and has SEVERE word retrieval issues worked 5 days a week for about 6 years with a SLP in order to learn how to manage her words. Like Noah, she would pound her head in frustration because she knew she knew the word but just couldn't get it in her mouth. She was taught a variety of tricks for how to find words and now at 18, although she still has blankouts, her vocabulary is tremendous due to her word retrieval tricks.

Word retrieval is a fairly common issue for kids on the high functioning end of the spectrum. A qualified SLP that is seen more than weekly is the best way to learn how to alleviate this issue. However, no teacher, even the most dedicated and educated teacher in the world will EVER be able to be attentive to, and help with word retrieval.

You do what you want as Noah's parent, but please at least keep in mind that I have parented a kid like Noah for almost 19 years, I'm a certified educational advocate that works with 2E kids and their families, and I have a PhD in testing and measurement. I'm concerned for all kids with differences, emotional and neurological. The one thing I want ALL parents of special kids to know is that counting on schools, public and especially private, is about the worst thing you can do. It is all about money and schools do not want to pay for extra help for any child. In this economy, teachers are routinely told to not support IEPs or 504s because the support is too expensive. Ditto for early intervention, where program's financial support has been pared to the bone.

Private testing, private services and public schools are the best combination to get special kids the right kind of support. Keep it in mind.

Please don't take this as an attack on you, your parenting, or the staff you use to work with Noah. I'm just trying to get you, and parents in your position be the best advocate you can for your special kids.


So many of us with the same issue! I still get teased about asking for the chocolate when I meant catsup years ago. (my daughter simply reached for the catsup and handed it to me. She knew.)
My sister asked me to go get the batteries in the refrigerator. Neither of us can blame medication. It's just us.
I LOVE the way you handled it. Noah's a lucky boy.


Oh, precious boy.


Oh! I just learned a week ago that it's incredibly common for children who have a weakness in long-term memory retrieval to also have ADHD. The same thing that keeps their little brains from paying attention to instructions also makes it harder for them to focus on the task of retrieving the word they want to use. And, like with any type of memory, anxiety can get make things worse. He's lucky to have such encouraging and helpful parents. Seriously, not all children I see (as a school psychologist) are so fortunate. Your little one is precious. Way to be flexible and responsive.


Poor Noah. my poor Maxx has the same sort of problem due to that little FAS fried part of his brain. I've seen the pounding on his own head and heard the frustration over not being able to make the words he wants. We're all learning how to take a deep breath now and then. Hang in there.


My son has ADHD also, so a lot of what you're saying is similar.
But, the fact that he is saying stuff like "my voice forgets the words" is HUGE.
Matt (age 7 now) would say "my brain is making me mess up" when he wasn't controlling his actions.
For him that was the first step in figuring out when his ADHD was coming into play. Now that he's in grade 1 he is able to communicate with his teachers when he's struggling. Sometimes he just can't do the workbook stuff, and they help him find a solution.
He will start banging his head when he feels "stupid" and that's something we are still working on.
As far as word retrieval (an issue for us) Matt loves playing computer games where you can "chat" but they give you some of the words. It's set up for safe chatting, but it's great for him.
Also, when Matt got diagnosed with ADHD (he was 4) he wanted to learn more about his brain. We did a lot of research on ADHD and were able to print up a bunch of images of the brain. Matt finds it pretty cool to see how his brain works, and he can honestly sit with his diagrams and explain what happens when he's having a rough day. And, when he has doctor's appointments he has been known to discuss with our doctor what effects the medication will have on areas of his brain. (maybe a bit weird, but he loves science, and it helped him to see that he's not a "bad kid" but that medicine helps him be calmer - also just a side note that for a long time we weren't doing meds, but using naturopathic remedies, and our naturopath was the one who suggested the pictures. I don't want to sound like I'm pushing meds at all)


My husband had a stroke in November and now has severe apraxia and aphasia. It's so frustrating for him, because he knows exactly what he wants to say (thankfully, his brain function is all there) but can't put it together. He can't say the words or find the words sometimes. As a 27 year old who, as a stay-at-home dad, use to sit all day with my brother (a retired marine...they are best buds) and talk about world peace, complex technical situations and science/math equations I couldn't even BEGIN to understand while I was at work, this has affected both of them greatly. He's getting so much better and we are working with him, including getting bungalow software for the computer (which may help you guys)....

It's so rough for everyone though. In fact, I can't be in with his speech therapy sessions because my heart breaks when he's working SO HARD and I can't do anything. Just heartbreaking. :(

I wish you the best of luck and great peace and strength for all of you.


One of the things we got for my son is a computer program called The Spelling Ladder (http://www.spellingladder.com/Index.aspx). It works great for kiddos that have learning issues and it's fun because it's on the computer. Check it out. All of your kids could use it.

Jane Gassner

The ruptured cerebral aneurysm I had seven years ago left me with that word retrieval problem. It's particularly bad in the evening when I'm tired. I've spent a lifetime being one of the most articulate in the room, so this is totally frustrating. It actually helps me reading all the people commenting who, for whatever reason, have word retrieval issues too. As usual, I thought I was the only one....


My daughter who is almost five has the same issue. It is frustrating for her (and us!) but its also provided us with some giggles when she resorts to trying to decribe what she's trying to say!

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