Resolutions

About a year ago I posted a picture of Caroline and observed that through her I could finally see Steve's Russian heritage (this is the picture - I said I wanted to keep cracking her open until I reached the teeny tiny Caroline in the middle.) Someone wandered by that post later and left a scathing "clearly you know nothing about eastern European phenotypes" comment that still makes me laugh lo these many months later because although I grant my grasp on biological anthropology is shaky; I assert that my logic is impeccable. To wit: Caroline looks like Steve, Steve looks like his birth father, and Steve's birth father was born in Riga to a Latvian mother and a Russian father. So, you know, while it might be true that Caroline does not resemble all of the people of eastern Europe she at least looks like the ones from whom she is descended. 

I mention this because lately there is something about Caroline that has me grasping for old Russian novels in search of endearments like solnyshko (little sun) and svechka (candle, I think - although I have taken Edward's word for her which is "Kaya" and tacked it on the end to make svechkaya; it's prettier than it sounds.)

Caroline burns. She glows. She radiates. She dazzles. On occasion she smolders with ire. She has all these feelings and she likes to talk about her feelings.

"I'm so HAPPY!" she said after dinner the other night as she beamed at us each in turn, hands clasped together and eyes shining like jolly old twin stars.

"It's too big," she said as I accidentally tried to snap her into a pair of Edward's overalls this morning. Then - pushing at my hands and slumping pitifully to the floor - she moaned, "Oh no... it's too big! Sad! I'm SAD!"

She finished by covering her face with her hands and I wasn't sure whether to applaud or crawl out of her presence backwards.

In contrast to Patrick with his five toddler sounds and Edward with his "car" "red" and "t'oo t'ee nine" she is like living with thirty inches of Oliver Wendell Holmes.

Not that she is always right, of course. The other day Edward slipped in his socks and did a neat Charlie Brown football flip that landed him right on his head. He cried.

Caroline assessed the situation: "Eddiebear's lonely."

Lonely?

I think the word she was groping for was: concussed.

Still... lonely! What a treat she is.

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You know how you watch someone do something several times a day, every day, for weeks and weeks and months and months then all of the sudden you think, "Huh, that just doesn't look right"?

I had that epiphany this past week as I watched Edward cram his cheeks hamster full for the thousandth time while Caroline took a bite, chewed and then swallowed before starting on her next bite. I looked at Edward again and contemplated the mental Choking Risk Threat Level chart I keep for all of my children. Caroline appears as a soft blue, choking risk: negligible. Edward, on the other hand, has passed red and seems to be stuck on a permanent blistering white that flashes DANGER DANGER DO NOT TURN BACK ON CHILD FOR A MILLISECOND DANGER.

I began to wonder if it is normal for a child this age to shove so much food in without swallowing and then I started thinking about his speech again and I had a thunder clap moment in which it occurred to me that perhaps these things are interrelated. Edward can make every sound individually (if you ask him what sound each letter makes he can tell you) but he does not tend to make sounds in sequence unless they are particularly lippy like "bubble" or "mama" or "puppy" or "baby". "Kaya" for Caroline is pretty much his piece de resistance when it comes to two syllables and his tongue.

So I think I am reconsidering the speech eval again. I know that sounds redundant but I considered it, then I reconsidered it so now I am reconsidering it again. Any thoughts? Or I should say, any thoughts again? Do you know children who horded food in their mouths like... well, like rodents?

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A few weeks ago I decided that I wanted to give you guys a free ad space on my sidebar. I feel like I generally get so much more out of this blog than you do that I wanted to even things up a bit by offering you (singular) the chance to advertise your small business or craft shoppe or project whatever while offering you (plural) the opportunity to view what everyone else is working on. It took me a little while to get it set up but it went live today. I have a few people in mind that I would like to feature in coming weeks but if you have, say, a soap business or a knitting sideline or an etsy anything that you would like to get up here please feel free to leave a comment or send me an email and I will see what I can do for you.  

The first featured link is one that is very important to me and I am honored to be able to share it.

In the past month or two a series of random emails with a reader lead me to become reacquainted with the story of Oliver Mastin (Alexa wrote about him shortly after his death here - please read it.) After years of loss and infertility Ollie's parents were thrilled to have a baby boy, only to learn within a few months that he had a fatal genetic disorder called Spinal Muscular Atrophy. It is, quite simply, a horrible disease and he died two days before his first birthday. I look at the pictures of this shatteringly beautiful little boy and I think about what he suffered and it absolutely breaks my heart.

More information about the disease can be found at Families of SMA: curesma.org

The Claire Altman Heine Foundation has more information about carrier screening that can be found at:
preventsma.org 

So, please, visit the sites. Consider SMA screening. And if you could possibly donate even a few dollars to Ollie's fund that would be wonderful. I know it would mean so much to his family as well as to the other families affected by this condition.

Thank you.

PS I did send an email about the Twin Cities gathering to everyone who expressed an interest. If you didn't receive it this weekend please let me know.

Comments

[Julie]

Julia, it is so thoughtful of you to use your space to advertise for your readers! I wish you lived in Texas, I would love to take you out for margaritas! I do have a request for your space. My nephew lives with a horrible condition called EB which is short for epidermis bulbosa? or something hard to pronounce like that (people just call it EB). They call them butterfly children because the skin is so fragile that a hug can cause blisters and open sores that last for months or never heal. My nephew is a lucky one. He can play some sports (golf is a favorite)and hugs and clothes are not too irritating. His knees and elbows and knuckles however are always bandaged and raw. The kids at school alternate from empathetic to rude and strangers often stare. He has a chance for a long life, but many are not so lucky. A great website is www.ebkids.org. Courtney Cox and her husband have a friend whose child had EB and they have started to get the word out and pull their celebrity friends to help - but still most people never heard of it. Your help would ..well..help! Thanks.

[Libby]

Caroline is simply glorious. SUCH a beautiful child. Truly. And I lovelovelove the bit about her feelings, much too cute!

And since you asked, I'll plug our photography business. It's www.rudyleal.com

Thank you!

[azita]

I actually considered moving to Minnesota when you mentioned the group outings - Hanging out. With Julia! - and as if I needed more reasons to love you there you go with offering to share your site. How utterly thoughtful and generous.

[Angie]

Julia:

I did not get the email. I live in south minneapolis and would like to meet up! Please email me at angela_maddy at yahoo dot com

txs!

Angie

[KatieV]

Chiming in to say YES, do a speech eval. It can't hurt--can only help. We have 3 kids, and while the first genuinely had delays and needed several kinds of therapy (speech, OT, PT, behavioral), I had our other two kids evaluated for therapy too at certain points even though they never had a diagnosis or "delay." It just gave them a teensy push where they needed it.

I emailed you about the ad space--awesome!

[Jenna]

We had an eval because I was concerned about my 18 mos old daughter's walking/climbing. Turns out she is fine, but I felt better having her evaluated. Nonetheless, during the eval, I off-handedly mentioned that she pockets food in her mouth like a hamster. The OT said that it is not unusual as some kids like a bigger "bolus" in their mouths so they can feel the food better and move it around for chewing more easily.

[Chi-An]

I think you should go ahead w/ the speech eval if you are reconsidering reconsidering. However, just to add a couple data points: both my kids (now almost-3 and almost-6) will stuff their cheekpouches full of food. Both of them are actually way over talkative and always have been. My cousin's son had a diagnosed speech delay with a physical cause (i.e., something in how his mouth and throat were formed) but it was linked to the fact that he wouldn't eat solid food at all. He's 6 now and still has issues with eating solids. IMHO Edward sounds like he's in the ballpark for speech, maybe it's just in comparison with Caroline the Commentator that he seems behind?

[Crystal]

It may be the Riga part that's confusing. Consider Baryshnikov.

Could be the key is Latvian/Russian, since Steve looks like his father.

Then again, my great-grandfather Sigmund looked like the sterotypical Russian Jew, yet he was actually German (Saxony?), and looked to be heavily middle eastern, far more olive complected than is typical of the region.

That said, being of Jewish descent, I have an address book full of Ashkenazi. Lots of Russian Jews. They all look like they could be cousin to Steve, fair complexion, lovely dark hair, and more hair, and more hair..... That brooding EE look.

It was interesting taking the train, we rocked our way through your fair city (er, well, the side of MPLS that Amtrak goes through is less than picturesque, but I could see lovely in far off places), and of course landed in DC.

DC is interesting, and a powerful reminder as to why I am a country mouse, and not a city mouse. How that is possible for a second generation native Angeleno, I am not entirely sure, but there you have it.

Your description of Eddybear fits Drew at that age to a T. When the Regional Center folks were gathering information on Michael for his autism diagnosis, they kept asking when we were going to have Drew evaluated for the speech and feeding issues. I was 2 months post-cancer, having Michael evaluated, and the season that is birthdays plus holidays was upon us, and we were getting our Ph.D. in autism at the time. Thanks, I think he'll survive until we can function again.

Never did get him evaluated, he eventually became a frightful prodigy of some sort (I'm starting to think I may have a hint of an idea how you felt being presented with Patrick as your first born. My other kids are smart but.... yikes.). So it's been easy to be complacent. Yet there are issues, such as him sounding like he's from the Bronx. He has rather an odd accent for someone born in SoCal, and raised entirely on the West Coast.

Interesting thing to watch for will be when Edward starts feeding himself things that he must bite from. Drew did choke, several times, because he would take these humongoid bites. He never seemed to realize his mouth actually contained food until there were vast quantities in there. You might want to check what Wikipedia has to say on... what the hell is it called... oral apraxia (not sure I'm remembering that right).

He'll be 6 this time next week, and you'd never know he had such issues, but there are still the lingering... "huh" moments.

Caroline.... ah, baby lust.... We took ourselves off the placement list while Lee's employment status was in question, and things have been slow since. We got a call while I was on the train that hit a tractor trailer.... The kids wound up going back home, which is a good thing, but.... *sigh*. The girly quotient is low around these parts. You are one lucky lady. I read with interest that they may be able to transplant uteri in 2 years.... I'm not sure I'll still be up for gestating, let alone.... well, really? Transplant for anything other than keeping me here on the big blue marble a bit longer seems.... kinda weird.

Then again, I'm kinda weird.

[SarahB]

My husband at the age of two was hardly talking...and then his parents brought home his new baby brother. Devin's first full sentence was, "I'm still here!" followed by stomping up the stairs! Regular talking commenced at that point.

[caro]

Ooh - Twin Cities gathering! I missed that somehow. Can you email it to me?

[Anne]

It doesn't seem like it could hurt--so what if the evaluator is wrong, doesn't realize that Edward is just days from speaking clearly in paragraphs, and so he gets an unnecessary session before that happens? I can't see any damage or downside.

On the other hand--I think I would have been uncomfortable choosing the eval because I'd risk finding out that my beloved child had "something seriously wrong." And maybe you don't want any of your kids to pick up on that--you've had enough medical issues already, yet.

So maybe present this eval and possible sessions to Edward and to yourself as just another cool new activity? Like intro piano lessons?

[Alice]

As a note, I have 18 month b\g twins and the boy squirrels food into his mouth and stuffs it to the max, but can speak clearer than most 2 year olds and knows an insane amount of words. His sister does not cram food in her mouth, but needs to put everything into her mouth (bark, rock, worm, ewwww...) She is not as clear as him. So from my limited perspective, no link. But I do agree with the many others on get the eval. My daughter had torticollis and plagiocephaly and needed a helmet. I mentally didn't want to push it but I'm really glad I did. Normally better to act so that you don't have to regret not doing it later, especially when there is little risk involved.

[Linda Giangregorio]

This must be fate...or something! In regards to the free ad, I do know someone that is just starting out, but is incredibly good at what she does. She makes specialty cakes,along with other goodies, lives in Mesquite Nv. and is my step-son's mother. Her web address is http://sweetpeascakes.blogspot.com/

Being that she just quit her job of 10+ years to pursue her dream, I think she could and would appreciate the exposure. Anything you can do would be great! Thanks for sharing your stories! You are such a great read! Linda

[Melissa]

"Do you know children who horded food in their mouths like... well, like rodents?"
My own. She's three today and she still does it. I pulled a piece of soft pretzel out of her mouth this very afternoon. We never had any issues with her speech, however.

[Leandra]

When I look at that second picture of
Caroline, the one where's she's smoldering, I can't help but hear her say "Dahrlink..." a la the lady from Rocky & Bullwinkle (WHY can't I think of her name?!?!)

[Abby]

Caroline is SO gorgeous, and I think it's lovely that you have a dark-haired beauty and two light-headed boys. You won the lottery!

I'd do the eval without question. It's not worth worrying about if you can know definitively.

(Also, my sister and I run an etsy store. We'd love to be featured whenever a free timeslot is available! You are so sweet to offer this to your readers. We sell premade scrapbook layouts and handmade supplies. www.carolinacraftshoppe.etsy.com. And I promise - I've been reading your blog for YEARS. I don't even remember how long!)

[Sandra]

I am a Speech-Language Pathologist, and I have to come down on the side of everyone recommending the eval. As so many readers have mentioned, it can be perfectly normal for kids to hoard food in their mouths like Edward is. But it can also be indicative of oral motor issues/low muscle tone. With his previous aspiration issues, it wouldn't hurt to get him assessed.

[Liz]

Hi there - I'm a rare poster but regular reader, weighing in on the speech evaluation thing. I say do it, absolutely.

My son isn't much of a stuffer, but he was an incredibly late self-feeder - didn't put a bite of food into his mouth until at least a year - not a Baby Mum-mum or a cheerio. He would eat anything I would puree for him but hated real food. And he was also a late talker.

I took him in for an evaluation at about 1.5 years old and they felt he was at least where he should be for receptive language or maybe a bit ahead but delayed in expressive. Given that, I find it hard to imagine the speech and eating thing weren't related.

In any case, what they recommended was a 12 week program where the parents received 8 group training sessions and they did four videotaped progress tracking sessions for Sam.

We learned all kinds of great strategies to help Sam improve, and I think it was much more effective than someone coming in an hour a week. The program was called "It Takes Two to Talk" and I really recommend it. Check out www.hanen.org. You can also just buy the resource book on Amazon which will give you 85% of the content of the class itself.

(I just realized that this sounds like a weird sales pitch for Hanen but I just thought that the program was great - Sam is now 2.5 and talking his head off.)

In any case, having the evaluation really helped just to know that his receptive language was really good - that means a different set of issues than if there is a more global delay.

Best of luck!

[punchanella]

normally i would feel guilty about asking for a plug, but i AM a devoted reader, and i DO comment...

so don't feel obliged, but i would love to be featured in your ad space.

http://punchanella.com

as for "eddiebear"... no, my son at more like caroline, but he spoke a lot later than i feel like most children do. so who knows! the professionals, i suppose. so reconsider.

[Sarah]

Not to say that you shouldn't do the evaluation. You obviously know your kiddos the best, but I did want to assure you that I lived with hamster boy for a long time. He now talks to excess with several delightful phrases. (He's 2 and almost a half just for reference and is no longer a part-hamster).

[kris (lower case)]

if i had any question at all i would do the evaluation. it's not like it is hurtful or anything so why not. my brothers daughter had a speech issue and he waited way too long to have her checked because he felt she was too young for speech therapy..she wasn't too young and it took years of speech for her to overcome all her speech issues but at least she became understandable fairly quickly.

[Michelle]

Might as well do the evaluation as you can then decide what to do with the information gleaned from it. You can consider and reconsider and then reconsider again once you hear what they have to say! :)

We did the eval with my youngest when he was 18 months and still not saying much at all. We were told his expressive speech was at the level of a 9 month old. Fortunately, his receptive speech is above and beyond so he can apparently understand me just fine when I screech at him to STOP SHOVING FOOD IN YOUR MOUTH PLEASE CHEW AND SWALLOW YOU ARE NOT A CHIPMUNK LORD LOVE A DAISY!

Yeah, so anyway. He's in speech therapy now and it is going very well. Still stuffing his cheeks but, y'know, baby steps.

[Linda]

I know the cheek-stuffing and slow speech development are not funny, but it reminds of an old joke that I have to share:

A little five-year old boy had gone all his life without ever really talking. One morning at breakfast, he looked at his mother and said, "This toast is cold." She was amazed and said, "Honey, you're talking! How come you never talked before?" He said, "Everything's been okay up until now."

[Heidi]

Edward is lonely - hee!

I'd love to toss my hat into the ring for ad space. I sell yarn at my etsy shop, and I'm currently offering hand-dyed fingering weight merino/nylon blends.

http://www.grantcreekyarns.etsy.com/

[Annabelle]

Just a brief comment to say thank you for highlighting SMA this month. I have taken care of many kids with this condition, and it is heartbreaking. Some do relatively well (one girl was in college; her friends helped with her daily care); others, not as well (Ollie's story on Alexa's blog broke my heart, again). Helping people learn more about these rare diseases (carriers of which are usually not-so-rare) is a lovely use of your ad space. Also, for anyone who is interested, the National Institutes of Health has a Rare Diseases Research office (http://rarediseases.info.nih.gov/); a good place to learn about these types of conditions.

[brenna]

Do the eval, but for the record: all three of my girls are the mouth-stuffing-hamster types and all talked early and clearly, so I don't think those are related. Do the eval because you never know and SOMETHING is bothering you about it. And if they give you any tips on halting the food crammage, let me know!

[Kari]

Oooh, I didn't get the invite. Send me one please :)

[JenC]

My 4 year old son shoves way too much food in his mouth. Also, he does see a speech therapist. The dentist just informed me last week that he has a cross-bite, and it can affect his speech. Maybe the two are linked?

[Kelly]

Delurking to comment as I am passionate about speech therapy and early intervention!

We took my now 2.5 year old daughter to speech therapy when she was 18 months and it is the best thing we could have done. In addition to being silent (result of hearing damage from many an ear infection) she also had some weird lazy lip thing so she couldn't blow or make an "o" shape with her lips/mouth/cheek muscles. Apparently her muscle tone on one side of her face was weak. I dunno. I breed strangely, what can I say. But apparently stuffing her mouth full was the result of the poor muscle tone -- it's easier to manage a large chunk of food in your mouth vs a smaller chunk. She also tended to put all her food into the one side of her mouth that had proper muscle tone, which I never noticed until the therapist commented on it and then I found it fascinatingly bizarre to watch every bite go into her left cheek pouch. At any rate we did months of speech, feeding and occupational therapy, with a wonderful team that was were so kind, fun, helpful, knowledgeable and compassionate. There were times when I felt they were more MY therapists instead of my daughter's - she just knew we would go and play with Kate twice a week.

At any rate... I vote a hearty YES to a speech eval. What's the harm?? Especially if you find a stellar therapist. There's only upside!

Our daughter is now a bossy talking fool with a mostly symmetrical mouth who eats appropriately-sized bites so that I don't need to hyperventilate every time she wants a grape.

[Carole]

Have the evaluation, although my son has been in speech therapy for about a year and I'm not sure it's done any good at all (as a former micro-premmie, they kind of expect something like this to crop up). He's 3 and apparently isn't much of a joiner. So the "talky lady" can make all the noises she likes; he ain't playing. She tries so hard and I feel bad when all she gets is Paddington's hardest stare...

But we've established that his comprehension is approaching the average for a 4 year old, which means I'm much more relaxed by his reluctance to pronounce his f or ps or whatever!

[shriek house]

I just offer this as another data point: like Edward, my son also stuffed his face full to bursting at every foodish opportunity. In fact, he still does, and as a result I review the Heimlich guide regularly. Haven't had to use it yet. YET. Anyway, he was late to talk at all (16 months) but then took off and has been wildly loquacious ever since.

So speech and face-stuffing aren't necessarily related by default, however they may be in Edward's case. If your gut is saying get an evaluation, then go with that, definitely.

[Sam]

Hmmm...Edward sounds very much like my Declan. My Declan who went through a year of a feeding team and speech evaluations. They all said the way he stuffed his mouth so full (so full he couldn't chew) was very much related to his speech delay....I'm trying to remember why, but I'm drawing a blank. Maybe the low muscle tone? I'm not sure.

And to reassure you, the speech therapy was positively delightful - Declan loved it. The feeding team were a huge help in getting Mr. Dec to eat like a normal human being. And at three he talks and eats better than most of his 3 year old friends. I would have him evaluated because, really, what harm could come of that. It will ease your mind and if he does end up needing it you'll know and won't worry.

And your kids are just so darn cute.

[Meg]

I would consider getting a speech and/or occupational therapy evaluation for Edward. I'm an occupational therapist in Halifax (Canada) and we tend to work with kids with oral motor issues here, not sure how it is where you live. "Pouching" food can indicate some different things that can most likely be resolved with therapy and some home exercises. I've worked with lots of kids with these kinds of problems and they're almost always resolved relatively quickly with little long-term effects. Good luck!

[H]

RE: Edward's chipmunking, YES. My best friend's daughter, just turned 4, did the exact same thing. Used to freak me out to watch her eat. She had multiple ear infections through infancy and toddlerhood, had tubes a couple of times, and the minute she was old enough her mom had her tonsils/adenoids removed, which were huge and infected. She's had significant speech delays and this fall started attending speech class once a week. Seems to be helping.

[sarah]

Caroline is so beautiful it is painful. Ouch.
I say yes on the speech eval. He may have some muscular coorination issues that are showing up in both his speech and eating.

[Kristine]

OK, you have just helped me make the decision to get (my so close to two I want to cry) Kiel evaluated.

The irony of it is that we had Noah (6yo) evaluated for just about everything due to his early months in an orphanage in Russia and continue to try and figure out what is going on with him.

Yet with Kiel I've keep pushing that mommy sense that his speech is delayed back into the dusty corners of my mind. In part I think because Zomg we are so exhausted with figuring out and dealing with Noah that the thought of having to do therapy with another child is beyond overwhelming. And also in part because in just about everything Kiel is the exact opposite of Noah at this age. Again with the irony, because by two Noah was clearly advanced in speech (and temper tantrums) where as Kiel is on track or ahead with everything but speech.

So yes, you and your commentors have convinced me to make some phone calls on Monday.

And now back to you and your delightful children, I can't think of anything cuter than the fact that Caroline calls Edward Eddiebear. Seriously beyond adorable.