Done But Not Over
Sad. But Not, You Know, Saaaaad.

Don't Steal My Sunshine

Dad Update:

His left lung, the one that collapsed, has been drained of fluid and...uh...reinflated? uncollapsed? You know. Whatever the proper technical term for WE DONE FIXED IT is. But! Now he has pneumonia in the right lung, and is hallucinating from a lack of oxygen to his brain. And not fun hallucinations that we can tease him about later. Scary dreary hallucinations about death that are making my mom cry and me stress-eat the hell out of a pan of brownies. AND THEN there are a couple heart-related things that I cannot spell but we are assured are at least somewhere in the realm of "normal" complications. So...yay for that?

Noah Update:

Despite waiting for almost two months for yesterday's evaluation appointment, I sincerely wished I could have rescheduled. Y'all know what the past few months have been like, health-wise, over here, with the colds and sinus infections and ear infections and ear infections LEAKING OUT OF OUR EYEBALLS. So you know that I know Sick. I am an expert at Sick. And yesterday I was indeed at the level of Sick where I shouldn't have been anywhere except my bed, researching the same damn breastfeeding websites, hoping for JUST ONE that would tell me some Nyquil would be okay, because I WANT NYQUIL. MULTI-INGREDIENT, ALCOHOL-RIDDEN NYQUIL.

Anyway. Noah went back with two very young speech pathologists -- I'm not old enough to be other adults' mother yet, but I was definitely old enough to buy them booze in junior high -- and I sat in the waiting room filing out scads of paperwork, balling a tissue up by my red nose to prevent dripping snot all over a detailed account of Noah's developement. How old was he when he sat up? Walked? Moved from single words to two-word phrases? How long did he toe-walk for? How many hours was I in labor with him? APGAR SCORES, LADY. WE CAN'T BELIEVE YOU DON'T HAVE ALL OF THIS WRITTEN DOWN IN YOUR WALLET.

(I DO have it written down, of course, but my iPhone's battery was dead so I couldn't access my blog. And without access to my blog I can only tell you that I have a son named Noah. He's over there. The skinny one with the dimple.)

I coughed and sneezed and crossed stuff out because I kept misspelling complicated words like months and speech and Noah. I detailed his diet (bread and other bread-like substances) and his likes and dislikes and fears and various obsessions, like it was a online dating profile for Very Quirky People. (Do you enjoy long walks on the beach with your socks on? Do you hate fingerpaints? If you could eat only one food for the rest of your life, would it be Goldfish Crackers?)

I was called back after the evaluation and tried my damnedest to seem alert and together and ADVOCATE, DAMMIT. ADVOCATE THROUGH THE SINUS PAIN! The head therapist felt that Noah's articulation actually IS very good -- he CAN say all the sounds that a child his age should be able to make. He just...doesn't, a lot of the time.

She noticed his lack of social/conversational speech and that the vast majority of what he says is simply him repeating what you've just said. ("Noah, do you want to play with the trains again?" "Yeah, I want to play with the trains again.") When he needs to build a sentence himself ("Noah, what do you want to do now?"), he struggles and comes up with something more basic and hard to understand ("Noah wan pay trains."). This might explain why he often defaults to stuff he's memorized -- canned answers and phrases, entire patches of TV dialogue -- and why he has difficulty answering complex questions about when and why and how.

When he eats, he only chews on the right side of his mouth -- something I'd never noticed, but hot damn if it isn't the truth. Put something in the left side and he'll immediately move it over before starting to chew. He still refuses to use utensils -- he'll lick stuff off them, maybe, but you'll rarely see a spoon actually enter his mouth -- and still has difficulty drinking from an open cup. And textures. Oh my hell, with the textures. His diet -- despite us doing and trying EVERYTHING that every book or expert recommends -- has never been worse or more restrictive. We essentially give him everything he needs to live mixed into liquid smoothies.

The therapist did not think that there is anything super serious or profound going on -- he's a quirky kid with a lot of little stuff going on all around the sensory spectrum who could really benefit from some extra help during a fairly critical age. You know, exactly the sort of kid who would graduate out of Early Intervention and then still struggle to really fit into a mainstream preschool classroom. Imagine that! Why I never! The more you know!

They're proposing speech therapy that will focus on his eating and oral motor skills -- getting him to use both sides of his mouth, accepting different textures and foods, and packing some pounds onto his skinny little self. (Like our ill-fated foray into EI Lunch Bunch, only not in a group setting and hopefully with a therapist with the tiniest modicum of PATIENCE for CHILDREN.) And then, a conversational/social skills session, where he'll be paired with another kid of similar needs/abilities and act out simple situations with appropriate conversation. They're also pretty sure they can work around our insurance's list of exclusions for speech therapy.

By the time I heard all of this, I was completely DONE and exhausted and achey, to the point where I hope the therapist doesn't think I approach breakthroughs in my child's developmental needs with all the excitement of a teeth cleaning. As we were driving away to pick up the baby from a friend's house, I belatedly started to process the New Plan v. 2009 and realized that wow, I think this is really going to be good. Great, even. Just what he needs.

We shall see, I guess. I need to recharge my optimism circuits, a little bit, but I think this might be a good start.




Saying a prayer for your Dad. Hoping you feel better *soon*! And, sounds like an excellent plan for Noah.


I am thinking good thoughts for your dad.

I have one side of my mouth that I prefer to chew with, and I suck at drinking out of most open cups- they have to be exactly the right size or I end up with water down my front, and I'm 20 so I should be better at that by now. When I did speech therapy (2nd through 5th grade, I think- elementary school's a bit blurry now) no one ever mentioned those were related problems.


I hope that your father has a speedy recovery. Well I'm with Noah as far as texture -- let's just say I'm a lot older than Noah and there are still some textures that immediately make me stop eating certain foods -- tapioca for example, but not cooked cereal. So I won't say he'll outgrow this but he certainly will learn to adapt and eventually he'll eat regular meals and a variety of foods. Keep up the good work sounds like you are all doing great. Hope your cold improves soon! Don't know if this will answer your question about meds and breastfeeding but:


I know you have lots going on, but I can haz an RSS feed pleeeze?

I've looked all over for one and can't see one on the page. If I'm missing it I'm sorry, but I don't want to miss your posts and can't be trusted to remember to come check everyday.


Donna P

That photo of Noah suddenly shows that he has turned into a little boy (not a baby, not a toddler) a real live little boy - like overnight!

Prayers for your dad.

Hope you feel better soon.


We had the same exact problem with spontaneous speech. Repeated speech would come out fine, but spontaneous speech could have been German for all I know.

My youngest 2 are still in speech therapy and have come a long way, their speech is no longer "German", more like English with a strong German accent.

Sending good vibes to your Daddy from NH.


OK, so on the kaflooey scale things are moderately better. Glad to hear that your Dad is making progress. Treatable things remain but they sound treatable. As a parent advocate who has been there, know that you are doing ALL the right things. Good luck with round II of intervention. Oh, and feel better soon!

Sprite's Keeper

Sending positive hopes for your dad and good vibes for Noah to take this program and run with it!


So sorry for the breaks you cannot has and for all the leakage.
But you do have a big handsome boy with a book. There's always that. And nine kajillion readers who would take a bullet for you and your kids.


Just so you know it happens a lot... we spent a horrible week with my dad in the ICU, with regular bouts of ICU-induced psychosis. My family is holocaust survivors, and he, like my grandparents before him, was convinced he was in the concentration camps. So it was horrible, but that said, he recovered, is doing great, and it truly did pass quickly. Here's hoping it passes very quickly for your dad as well!


Sending lots of hopes and prayers your way that your Dad will be alright.
Good job advocating even while sick and dripping.
And Noah? that picture? OMG when did he become such an adorable boy, grown up child? They are not supposed to grow up and get bigger. I may have to go hyperventilate around my son now.


Reesie -

I used to have a link to it but took it down after the hundredth email from someone who didn't understand what RSS was. (I think they thought "subscribe" meant I'd like, send posts in an email or something.)

But! If you get Firefox you'll never have to look for a feed address again! There's a handy little "subscribe to this page" icon in the address bar for any site that publishes an RSS feed. Brilliant.


This sounds good to me- except for the part about your being sick. AGAIN. I feel your pain a little but I am able to medicate so you win. Hope it's better soon.


sounds promising! I hope things work out this time :)


I can not believe how little kid like Noah looks. He's um...not baby or toddler looking anymore. Sounds like you've got a good team working on a good plan and everything will work out.

Prayers for your dad.

Alicia Millis

still praying for your dad, glad his lung is back to normal.

wow so good to hear about Noahs appointment! It sounds like they can really give him the support he needs, so exciting!

Hope you are feeling better soon! I think you should stay in bed tmr!


Uh, you can't have Nyquil and breastfeed? Uh oh. (running off to research breastfeeding websites.)

jive turkey

My Lord! He looks so big!

Here's to optimism, the new plan, and a recovering Dad. I think you need a vacation now.


I just recently found your blog and I love reading it. Your struggles and fears and anxieties over being a mother make me feel like I'm not alone in my own struggles and fears and anxieties. So thanks! Good reads.

My thoughts are with you and your family in your dad's illness. best wishes.


I am an early childhood special educator, and I have been reading what has been going on with Noah. I am very impressed with the speech therapy he will be getting. I hope this will be successful for him.


Now that you mention it, I also only chew out of the right side of my mouth.

This is probably a problem.

Plano Mom

I'm sending all the good vibes I can over your way. I wish there was some way I could come and do anything to help you get that optimism back. You've had some tough times lately, and my heart hurts for you. Hang in there and we'll keep hoping for a better 2009.


Great news about Noah (and glad to hear your dad is fighting and alive and there is hope), but, who is the teenager in the picture? The one with the adult haircut and strong jaw? Handsome guy, that one.

Parsing Nonsense

I'm so glad the speech therapist is hopeful for Noah's development! It really is encouraging to know that someone qualified thinks they can help! Best of luck and I hope you feel better soon!


I am glad your dad is doing somewhat better and hope he continues to improve. Ummm is Jason still alive? And my Noah is becoming such a little big boy wow. Also I am glad you are so diligent and such a good mommy in getting Noah the help he needs. (not saying boy he needs help but uh you know what I mean i hope?)
I will continue to keep your family in my hopes and prayers and I am sending some virtual nyquil your way.


that is so great, people who help you and him with what he needs specifically.
I had just taken my son to a speech evaluation too, and he is having trouble with his sentences too, but I haven't been through what you and Noah have,so its something that is a little scary to me, but on the other hand, Im just like: JUST DO IT.I think my biggest fear, is that because my son needs speech help, they think I'm a dumb mother.


Glad things are looking up for both your Dad and Noah.


Hey Amy, I have been reading for awhile, and it always helps so much just to know that I'm not alone with the quirky kid thing going on! My daughter is 3 1/2 and is so completely similar to Noah, from the picky eater, sensory issues, speech delay, etc....It's like in some ways she seems so typical and not like those "other kids", but then put her in a room full of kids her age and I cry everytime seeing that she doesn't quite fit in there either! I know the exhaustion of all the evaluations by developmental peds., speech therapists, OT's, on and on and is mind numbing truly and I just keep wondering when all of this will be over and Sarah will finally just get to be a kid and I get to just be a parent. Anyway, I don't have any words of help, but I just thought maybe it would be nice for you to know too that someone else is out there that has been where you've been, and is where you are....and hopefully some day we will be able to say that is all in the past, and look how far we've come! Hang in there and sending your family and dad lots of good health wishes!


Look at him poring over his book. So cute. I know he is fine since he has you as an advocate, but I look at him and hope that he will not have to struggle with anything, even with pronouncing kerflooey. No child should ever have to struggle. Best wishes, and hell, drink nyquil. I drank a glass of wine every other night while breastfeeding both children. A little bit of alcohol never heart anyone, except our goldfish Sally but that's any entirely different story.


hurt, not heart.

Maybe I should lay off the wine, at least at work.


This sounds VERY good.
Think of it as maintenance for the little man.


I'm so glad the eval went so well and they are putting together a plan of action to help that gorgeous, quirky kid. And I need to get that book in the mail because sometimes you just never know what will help and maybe it will be the dinosaurs!

Everything with your dad sounds quite scary and traumatic. I really hope he turns a corner soon and he and your mom can start to plan the next phase of their life together.


amy - noah is so cute. totally reminds me of my boys at that age.

thank you for the updates on both noah and your dad. sending you good vibes....

try otvivin (sp) for your cold. it sure isn't as good as nyquil but it's better than nothing.


that sounds FANTASTIC :-D

badness jones

Fingers crossed for your dad - it's tough watching your parents sick. My dad has been through a quadruple by-pass and cancer therapy in the last few years and it's been hell.

How long did you have to wait for Noah's initial assessment? My son is 25 months and waiting for a speech assessment and we've just been told to expect a 10-14 month wait for an appointment. Which. is. RIDICULOUS!! Your posts about Noah's progress help though - I don't feel so alone.

Glad things seem to be looking up for Noah, and I hope that the Sick will be banished soon.


Yay for not too super serious or profound. You rock, little dude.

And I am glad your dad is progressing. Yay for him too.


There is something to be said about just plain ol' good news. Especially when it comes to kiddos and Dads. :)

Hang in there, lady. Spring is comin' and I can feel good things happening all around.


I hate the stuff with your dad. I went through it on a minor scale last year at Christmas, and that was bad enough.

As for Noah, you are a rock star. Some day he will read your blog and realize that God gave him an angel for a mother. Perhaps a sinus infection prone angel, but still, an angel.


Two possible suggestions. The way you described Noah's repetitive speech and his inability to form sentences when he needs to choose things to say is often caused by WORD FINDING issues. This is something that can be helped by speech therapy, but it takes a lot of time and a lot of teaching how to clue kids into finding ways to remind them of words they're trying to recall.

The second is that with the diagnosis of SIDs, with his speech issues, his sensitivity to food, and his particular quirks, you might, in the back of your mind, want to test him for a NON-VERBAL LEARNING DISABILITY when he is older. He's much too young now, but NVLD is quite difficult to diagnose until a child is in a real elementary environment, especially after they have learned to read chapter books. Third grade might be about right. He has some of the classic signs of NVLD, but until he's older, you just will not know much. It's very similar to many other 'on the spectrum' disorders like Aspergers, SIDs, etc. and is often misdiagnosed as one or the other for years. It's not unusual for kids to be in their tweens before the correct diagnosis. But it's something to keep in the back of your mind.

Let's just hope that your school system keeps up with the IEP they should be writing for him right about NOW.


Hoping your Dad gets better soon! And that you're feeling better too!

I would date someone who hates fingerpaints and would only eat Goldfish Crackers for the rest of his life. Okay, maybe only the fingerpaints...


I'm thinking about you and your family. At this minute, we, too are dealing with ICU psychosis with my Dad. Whenever he has surgery or gets an UTI (and he's prone to them), his mind goes off wondering. The first time, he thought he was in a Nazi concentration camp and that "they" were after my Mom. And they are protestant and Dad was too young to fight in WWII. I saw that someone else's father had a similar experience. This time, though, he thought he has spent the last couple of weeks running around the countryside with his brothers. Additionally, he's thought that he and my ex have been "cracking cases." You know, like Starsky and Hutch. So at least this time he's having some fun and adventure in his psychosis. But the kind your dad is having is scarier that shi!t for the family. If he's like my dad, one day you'll walk in and will find him sitting up and talking like his normal self, and won't remember any of it. I pray for you all that it is soon.


I'm so proud of you. You're doing such a great job of parenting through the snot and the parent-being-sick-trauma and the new born and the nursing and I'm so proud of you. I know I have no right to be because I'm just a reader who doesn't comment very often, but as a teacher, I am, I am so proud of you. A + 100 in parenting for Amy!

I'm a fourth grade teacher, but we eat lunch family style at our school, and I just got a first grader with some what similar issues to Noah's to eat crust! and red grapes! And to scrape a carrot with his teeth! And his mother wept all over me when she found me in the hall (I didn't know who she was, it was kind of awkward) because he had been kicked out of OT, written off as hopeless in the eating department. I've got that "teacher of big kids" mystique going for me, and I also make announcements at lunch so every kid thinks I'm awesome, but also? I used a lot of what you've written here to help me along. And what I really wanted to say by this story is ... hang in there. Even if he isn't eating well by first grade, he's still a great kid and he will be a great kid and people will still love him. I mean it.


I'm hoping your dad's progress continues to improve. My dad had a triple bypass (after years of hearing how it would kill him), and was in a medication induced coma for a week. It was the week of our wedding. BUT... we've been married for over 6 years now, and he's still here!
Our son has serious speech issues (unofficially at this point, but most of his therapists are thinking apraxia of speech) that go along with his ASD diagnosis. He was in feeding therapy for over a year, but still only eats applesauce, chicken nuggets, toast, and crunchy/salty snacks. We're working on it, but those darn sensory issues get in the way!


That's one hurdle your dad has conquered. Alright! They don't really tell you how difficult the recovery can be for bypass patients (probably don't want to terrify the family!). Just think of recovery as a series of baby steps--celebrate each one and stay optimistic for the next one! My dad was in and out of the hospital for a while after his bypass with one thing or another. Remember that recovery involves not only the patient and the care team, but the family, too.

Sounds like you've connected with some good therapists for Noah--double alright! Keep going! Cannot believe the pic of him--he looks so grown up.

You and your family have been in my thoughts and prayers so much over the past week. I'm praying for the very best for all of you. The internets are here for you!!!


It sounds like they knew exactly what he needs and weren't giving you any bullshit answers to get you to leave or anything. I hope it works out with them and get some rest!


Dude - hang in there. Still praying for your dad. My mother (who was a dialysis patient) got a really bad bladder infection and hallucinated that she was a kid back in summer camp instead of in a hospital emergency room - scared the crap outta me at the time! It could be worse - you could be that poor (anonymous!!) woman who gave birth to EIGHT!Count'emEIGHT!BABIES! yesterday.....don't you just want to, like, light a MILLION candles for her??!!! I sure do!


Good, great, happy, healthy thoughts for your dad, Noah, and YOU!!


Things are looking up for you (and Noah and your Dad). I know it. I feel it.


I hope your dad heals quickly and that the visions subside.

Noah looks amazing. Not too skinny at all! And, hey, I chew on one side of my mouth -- totally. I have to force myself to chew on the other side........


My 3.5 year-old, Ty, is so much like Noah. At 2.5 we had him evaluated for a speech delay. He didn't call me mom, mommy, momma, or anything, couldn't answer yes/no questions, and couldn't put two words together. He talked in a jibberish we called Tynese. Now a year later, he is TALKING and asking questions!! He does repeat a lot of what we say when we ask him a question but he is getting better. Luckily the school district we live is amazing, and he goes to a 4-day a week preschool. They tell me he will be more ready for Kindergarten than the regular kids.
He is also a very picky eater. He pretty much only eats crackers and drinks lots of milk. We add in Ovaltine for some extra nutrients and always give him a daily vitamin, but he is still thin. I get tired of people blaming me for his food issues. I hear, "if he gets hungry enough he will eat something" all the time. But he would really rather starve than eat something he doesn't like. He also has a strange quirk that when he eats a sucker, he doesn't let it touch his lips. He opens his mouth really wide to avoid contact. I know he is different and maybe sometimes difficult, but that is why he is so sweet, bright, and incredibly perfect, just like Noah.

Jen L.

Keeping your family in our prayers.

Noah totally looks like a "big kid." Glad things are looking up for him.


Keeping your dad, Noah and you in my thoughts. I hope all is better v. soon!


I hope they can get your dad's health issues cleared up soon. God its got to be hard dealing with that.

And, the people who evaluated Noah sound like they really know what they are doing. Wow...I think they have figured out a great plan for him.

mama speak

Hey, prayers for your dad, seriously.

I know you probably won't read of these (being sick and all) but JIC, I wanted to note that maybe part of your lack of enthusiasm is that you've been down this road a bit already. While, you are hearing what you're hoping for, besides feeling like crap, you're also not jumping into the water w/out looking first. Honestly, that right there is a HUGE thing for all of you. If you're able to be objective (which is next to impossible w/your own child) about this stuff, the better you will be able to addresses it.

Hang in there. I'm sending NyQuil vibes your way. (Maybe if you sleep in the bottle?)

Madeline Wejchert

Prayers for your dad, best wishes for health and wellness for you. I think the assessment for Noah sounded positive. He really is the most darling boy!


Delurking to tell you that I am thinking good thoughts for you and everyone you love. Sorry I can't be more witty.

not supergirl

So glad to hear about the sunshine, and I hope things progress smoothly for your dad and Noah. And I hope you shake your own illness, too!


Good lord your children are adorable.

Another crazed fan here to say that I've been praying for your dad and Noah and your family. I know you don't know me from Adam, but you're probably my favorite writer here on the webernet. If it helps, my grandma had multiple bypass surgery at the ripe old age of 85. There were a couple fits and starts in her recovery, but she eventually did come through it healthier and stronger than before. I hope the same for your dad.


You have an awful lot going on and you're doing a great job holding it all together. And simultaneously blogging about it, bringing together other moms with kids with learning delays. You're a force for good in the world, Amalah. Keep it up.


I am also on my 4th cold of the winter.

the fuck!


KayTar was in much the same place verbally last May and has made really great progress, I'm sure Noah will do the same with the proper supports. The program sounds really great!

FTR, she also only eats with one side of her mouth and we've noticed when she talks animatedly, she also only uses that side of her mouth. Weird.


I'm so glad that your family's news is looking better. I hope you start feeling better yourself!

Devon Officer

Amy. Your dad is doing better, and you can only hope for the best. You know the internets are thinking of you.

And Noah? You seem to have found what could be the best thing for him. A great group of therapists who aren't old enough to be cynical or tired! :)

Feel better...

Alright Tit

Man, how have I only just discovered your blog? (Via a very canny Twitter follower who said nice things about both of us actually, that's how.) Seriously though, love it. And I usually shy away from parenting-ish blogs (for reasons outlined on my own.) Anyway, just wanted to say hello. Love to you and your lovely family; thinking of your Dad.


Still thinking of you and your family. Hang in there, it has to get better.

I have an Aunt in the hospital for oh 5 months now. She's finally (vigously knocking on wood) turning the corner. She had a rough time - 2 liver transplants plus a few more surgeries just for fun the first month alone. She's a tough cookie and isn't about to give up - hence she's still here. Tell your dad, it will get better.


Excellent news about Noah - this is great, especially since they are adept at negotiating the insurance route. Nice!


I'm so sorry. You are due for some good luck and good health soon..Spring will be a happier time.


Dude, you've got a lot going on... I did want to mention that I know a couple kids who have sensory issues who also had a fairly traumatic cord around the neck birth.... does anyone ever connect that that you talk to? Not that there's anything to be done about it, but it could be a reason... ;) hang in there! being half dead and nursing is THE WORST!


This just needs to be said. Noah is not exactly like my son was, but very similar. My son is now in 4th grade and eats whatever I put in front of him (not without complaint, however) and has spontaneous conversations every minute of every day.

The issues have changed, as is the tendency with age, of course. But it's all good.

I know I've written this before, but I have been where you are. You are handling everything better than I did. I hope you are still writing this blog when Noah is 10 so I can be all, "I knew it!"


This just needs to be said. Noah is not exactly like my son was, but very similar. My son is now in 4th grade and eats whatever I put in front of him (not without complaint, however) and has spontaneous conversations every minute of every day.

The issues have changed, as is the tendency with age, of course. But it's all good.

I know I've written this before, but I have been where you are. You are handling everything better than I did. I hope you are still writing this blog when Noah is 10 so I can be all, "I knew it!"

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