in a bit of a pickle...

in both the literal and figurative sense of the term, i have found myself in a bit of a pickle today.

i'll start with the literal sense of the term: 

today, emma watched her mama eat a kosher dill pickle. i like them from time to time and was enjoying one this afternoon while emma ate her afternoon snack.

well, emma immediately lost interest in her snack du jour and lurched toward me with her arms (while the rest of her remained firmly seated in her highchair) with an adorably voracious glean in her eye.

so, i indulged her, recalling as i did so our feeding specialist's recent recommendation that we provide our little apple cheeks mcgillicutty with more food options for her chewing enjoyment (for more on that, read this post).

and, i am just so sorry i didn't manage to have the camera nearby or fully charged, because you should have seen our little emma as she ate the rest of her mama's pickle with gusto.

yup, she gnawed on it until it was gone.

now, on to the figurative sense of the term:

so, i've written recently about emma's growing receptive and expressive communication skills.

i've extolled the many amazing virtues of using Signing Time in recent posts such as here to build a baby's communicative skills -special needs or not.

i've mentioned emma's weekly speech therapy sessions, our work with flash cards to identify objects, people, and animals in emma's world (and some that are not, but are good to work with, like farm animals - think pigs, cows, sheep - which we just don't have in our back yard (much to her chagrin, i am sure because she adores the pig and cow in particular)), and our dedication to reading to our little e with an almost religious reverence. 

and, it's really paid off. 

in the past week, things started to come together for emma in a seriously big way.

quite suddenly, she began signing "milk" and trying to say the word, too. she'd sign "more" and try to say it as well. she'd sign "all done" and on more than one occassion has said something sounding quite like "done."  and, she'll combine them at the breakfast, lunch, or dinner table as a verbal and/or signed phrase - such as "more" "eat." 

when she did that, it seriously blew me away. i think i teared-up and laughed at the same time. it's been overwhelming watching her begin to communicate in an intentional way.

and, my list of her accomplishments continues...she says hi and waves hi. she says bye and waves bye. she repeats words we say when she can (as in lemon which i mentioned several many posts back) and asks for her doggie stuffed animals by saying dog, and making the sign for it.

when she sees our two old labradors lollygagging about, she will look at them and sign dog and say dog, dog, dog.

when presented with a picture flash card with our yellow labrador on it, while simultaneously being shown the flash card for another item or person (like her mama) and asked to point to the dog, she points to our yellow lab, luna, and says "luna" and "dog" and signs "dog" in near unison.

it's incredible.

i have no other word for what she's doing or who she is than to say simply - incredible.

so, why do i find myself in a bit of a pickle now?

well, we're supposed to be weaning her off the bottle of milk, as we progress with her ability to drink from a cup and a straw.

the progress has been slow, thus the need for the feeding specialist.

and now, we'll i feel like i've hit one of those parenting crossroads that i imagine all parents reach at some point or another.

my daughter now signs and asks for "more" "milk" "bottle" "more" "milk" "bottle" "bottle" "bottle" with a persistence, a glee, a plea, a longing, a need so gutteral, so visceral, and so serious that i have a hard time denying her a bottle and instead proffering her a cup with a straw (which she'll often refuse). 

i guess it's because she can finally communicate some of her most basic of needs - both verbally and through sign language. she sees that we understand and are so proud of her we (read: i) literally squeal with glee after she expresses each word or sign with a knowing look on her face.

i just can't bring myself to deny her something she has worked so hard to learn to ask for.

i tell myself that it's not like she's demanding a doughnut. she's just very clearly asking for her milk, her way; a way, though, that needs to be phased out sooner than later so her drinking skills progress.

so, there you have it. the pickled state i now find myself in. i know i have to redirect her to the cup with a straw and sometimes i do; really, i do.

but, it kinda stinks.


how about you? have you had a similar experience? if so, any sage advice?

friday fun stuff

a link for your friday enjoyment and future use:

my awesome cousin (who is celebrating a birthday today; happy birthday!) recently passed along this great resource for parents (and families and friends) of children with special needs.

it's a new toy guide that Toys "R" Us published for "differently abled" children - from children with Down syndrome to children on the Autism spectrum.  it's filled with loads of great recommendations for toys that are developmentally appropriate for our special kids.

apparently, Toys "R" Us has been publishing this guide for 20 some years (kuddos to them!).

the guide is available online in both English and Spanish here. so cool!

p.s.-when you click on the link, you'll find a video about the guide. if you look at the tool bar above it, there is a list of options, including one that says "view guide."  if you click on that, you can either view the guide online or download it in PDF format for your future use as you decide what toys to purchase the special needs child in your life.

enjoy and happy friday!

Cheetos?!

as many of you already know, emma has low muscle tone - a trait common to individuals with Down syndrome.

her muscle tone impacts her ability to tackle and accomplish a whole slew of things from eating to drinking to sitting to standing to, well, you get the picture.  i've written about it copiously in past blogposts - even as recently as here and here.

emma had a follow-up feeding consultation today with a feeding specialist who works with children with low muscle tone. we recently requested an increase in those visits because of emma's relatively slow progression in drinking out of a straw or cup and eating more solid foods, particularly when that food is somewhat dry or chunky in its consistency.

after watching emma eat breakfast - a bowl of oatmeal with fresh strawberries and bananas and soy milk (she can't drink regular milk because she is milk protein intolerant) - the feeding specialist gave us various recommendations on how to stimulate emma's mouth muscles for eating and drinking prior to feeding her.

she also gently suggested that we were, perhaps, overly health-conscious by preparing emma's meals and snacks from fresh fruits, fish, and vegetables and whole grain-based foods. she suggested canned fruit (it's softer) and white bread (which is easier to masticate than whole wheat) and other "enticing" foods that motivate a child  - even Cheetos, she said.

Cheetos? really?

so, i listened attentively and agreed to find more "snack" foods for emma's twice-daily snack time that she might find more interesting than the dried fruit, fresh fruit, and other similar items i've attempted to use to exercise her mouth muscles and build her strength while still enjoying a yummy snack.

i went straight away to Whole Foods on a mission. after scouring the isles, i found organic, non-sugar teething "biscuits," puffed (brown) rice cereal also without sugar, vegetable puffs that should melt in her mouth after a while and that she can eat because they aren't made out of any dairy products, and some fairly soft soy cheese that i thought i could cut into tiny chunks for her to try.  and, i bought my tried-and-true fall-backs like fresh pears, organic apple sauce (no sugar added), avocado, whole wheat pita bread, and hummus. however, none of those really require much chewing at all, with the exception of the pita - and, even still, it's thin and i give her tiny bites.

so, as you can see, i didn't go the route of bleached white bread or canned food. and, i just. can't. do. Cheetos.

stay tuned, though. i've learned to never say never. (though, i'm fairly certain my hubby will say never if i ever feel swayed). and, i am open to trying a number of things to ensure our little apple cheeks mcgillicutty has all of the types of food she needs to develop her feeding skills properly - i just want to make sure we've exhausted all the healthy food first, before we go the route of say, the Cheetos.

how about you? if you have a child with low muscle tone and feeding issues, what (healthy) foods have you used to build chewing/swallowing strength (while providing nutrients)? any recommendations? or do you foresee Cheetos in our near future?!

bookends (to a day in the life of an apple cheeks)

if emma were writing this right now, i think she'd agree that her day had two very positive bookends to some challenging substance in the middle.

we started the day at the National Gallery of Art. we're so fortunate to have access to free, wonderful art collections thanks to the Smithsonian which is, relatively speaking, just a hop-skip-and-a-jump away from our home.

at the Gallery, emma enjoyed some Monet, Manet, and Matisse, smiling and giggling along the way.

she stared inquisitively at a Picasso sculpture.

she grunted her way through a modern exhibit that's new to the Gallery. i am still not sure whether they were sounds of pleasure or disapproval. but, the exhibit clearly provoked a hearty response from our little e.

and, she went up and down a really, really, really big elevator to go from floor to floor to see the exhibits, which for her seemed to be just as much fun as the rest.

we then trekked past the Capitol and the Washington Monument to lunch at the cafeteria in the National Museum of the American Indian, which has a variety of pretty decent food as far as museum fair goes. she noshed on some potatoes and stewed apples, some wild rice, and some squash. 

but, then, well...we had to go to her 15 month check-up (and follow-up to her month of viruses and infections and antibiotics and nasal sprays) with her pediatrician.  her doctor examined her, weighed her, measured her (she's 30 inches long! how/when did my little baby become 2.5 feet tall?!), chatted with her, and then sent her to a room where a nurse administered four (yes, four) big shots in her legs. three vaccinations and one flu shot.

ugh.

the crying, the screaming, the salty tears rolling down her plump little cheeks ensued for a good 45 minutes. without. end.

the entire drive home sobbing. and declaring mama, mama. mama....and then (perhaps knowing that mama was the one who took her to the appointment in the first place) invoking dada, dada, dada....

and so it went. a snack, a brief nap, and some motrin (at the doc's recommendation), Zantac for her acid reflux, vitamins, and her children's DHA cod fish oil later, emma was back in the game with a smile on her face, exploring the house, crawling, climbing, taking a few, ever-so-hesitant steps as she cruised alongside the sofa. 

she grabbed the ball, she patted the ball, she even repeatedly rolled the ball to her mama (after so many weeks of practicing, it just suddenly all came together, even after the day she'd had).

she picked up her pretend phone and held it to her face and said hi and then hung it up to say bye-bye. (again, this after so many practice runs in therapy recently where one or another piece was missing, she pulled it all together today of of all days).

and, to top it all off, she ate mama's homemade Indian food for dinner, smiled her way into the tub, and then fell deeply asleep...and, i'd like to think off into a peaceful dreamland where there are no viruses and antibiotics and shots galore or salty, sobbing, throbbing tears rolling down my litttle apple cheeks' face.

on courage

i was rummaging through the attic this weekend, and stumbled across an old jewlery box. in it, among other items, were two stones with words carved on them -

"happiness"

and

"courage"

i don't recall when i received them or from whom. but, i know i've had them for quite a while because the box was old, dusty, and had items from the early nineties in it.

i have been in the process of cleaning out our attic a bit recently (our house is small and there's little-to-no storage space, so it all invariably ends up in the attic). ordering the chaos, or at least trying, and simplifying along the way. especially since our home is now a bit overrun (joyously so) with our little apple cheeks' many toys and books.

as i've done so, i keep asking the questions - do we really need this? do we ever use this? how does this enrich our lives? and, making the decision to sell, donate, or trash, depending on the applicable circumstances. sometimes it takes a lot to let something go. other times, it's quite cathartic to just get rid of it.

i decided to bring the "courage" stone downstairs from the attic to keep. the stone entitled "happiness" - being a loftier goal and all, anyhow - remains tightly enshrined in a box in the attic for now.

i guess i brought "courage" down because it's hard to be courageous on a daily basis - it requires both the objective strength of will and the subjective strength of faith to master it. 

and, it isn't always easy to readily identify individuals who are profiles in courage to set an example. there are public ones to be sure - such as the firefighters who walk into burning buildings to save lives. but, sometimes, in our day-to-day lives it doesn't always seem like such heroic individuals are in our midst.

so, that stone got me thinking about the number of people in my personal sphere who have demonstrated true courage in the face of their own adversities:  from mothers-to-be who have overcome multiple miscarriages to try again and those who have made significant life changes in the face of serious illness to those who have confronted abuse in their past and refused to let it define their present and those who have handled the decision-making details surrounding the loss of a loved one and all that entails - there are plenty of individuals i know personally who are courageous on a daily basis and set an example for me and for all of those who are blessed to know them.

and, it prompted me to think about the degree to which i exhibit courage (or don't).  i've needed to summon a decent amount of courage recently for a variety of reasons, like the courage to confront and overcome my fears about the need for a change in my professional path to dedicate more time and energy to emma's daily care.

but, i've failed to be courageous in other ways. 

so, i keep the stone as a daily reminder to summon courage in the face of challenges. and, to treasure those many in our lives who have demonstrated courage in their own ways.

to each of you, thank you.

an apple cheeks briefcase

emma's speech and educational therapists recommended that we make flashcards of familiar objects, people, animals, and things in her ever-expanding little world so that she learn to identify and eventually say the words for those objects, people, animals, and things.

with the assistance of our speech therapist, emma's grandmommy, and emma's godmommy, and their collective skills with photographing and/or reproducing certain images and laminating them all for durability, we have an abundance of flashcards for emma's use.

emma's grandmommy helped our little e organize those cards. the cards are now divided by categories and each category (fruit/people/animals/etc...) are stored in a tiny pouch in emma's own little "briefcase" (a play purse that i believe we received as a hand-me-down from a good friend and has since been converted into an apple cheeks therapy tool).

emma now has her own little briefcase of cards, which we all spend time reviewing together. she is starting to see an image and say words like mama, dada, dog, book (with a lot of help and loving reenforcement).

as you can see from the photos, it's a task which (even while sick) she considers terribly fun.

p.s.: that bottle in the foreground of the photos that looks a lot like one of those honey bears you buy at the grocery store with honey in it? yes, that is it, with a big straw inserted. why? that's what we're using at the wise suggestion of emma's therapists and other parents-in-the-know to teach emma how to suck from a straw. (because emma has low muscle tone due to her diagnosis, eating and drinking-related actions like sucking from a straw or sippy cup and swallowing are a challenge).

we squeeze the honey bear bottle of water (with no honey added, mind you) while she has the straw in her mouth. she has learned, slowly but surely, that water comes out of the straw, thus creating the cause and effect necessary to prompt her to attempt to suck from it. all of these pieces finally came together this past week and emma learned to drink out of the straw on her own yesterday evening.

next step is encouraging her to take the bottle and drink out of it herself while holding it, without assistance.

on grief

whether it's over the loss of a job, the loss of a dream, or the loss of a loved one, grief has a funny way of dictating when it arrives, how long it stays, and when it decides to evaporate its way out of your life.

throughout the course of the last several many months since i started this blog, i have shared far many more moments of joy gleaned in the day-to-day life of our little apple cheeks; shared with you in photo and through the written word how tremendously blessed we feel to be in her life.

and, i have share her individual - and our collective - ups-and-downs, to be sure.

but, i haven't been as frank as perhaps i could be - to the benefit of Apple Cheeks McGillicutty's readers, many of whom have children with special needs - about the grief we, as a family, still feel from time to time about our daughter's pernicious diagnosis.

not about her, mind you. not at all.  she is a blessing, a joy, and has changed our world and lives for the better. she does so each minute of the day.

but i haven't shared much of the grief that i, and my husband in his own and often different ways, have felt as parents of a child who struggles to do that which often comes so much easier for her typical peers; a grief that still sometimes catches me off guard, grabs hold, and weighs on me.

truth is, sometimes we hurt for her, even if she does not. we feel an isolation of her, even if she does not feel isolated. and, we are, at times, deeply saddened by the need for constant therapy sessions and medical interventions to set her on a path toward empowerment and independence down the road.

that i (we) feel these things doesn't diminish the degree to which we celebrate each success. and, if you've read any of my posts, you know we do indeed celebrate with such joy her tremendous achievements - like saying "bottle," signing the word "more," commando-crawling all over the house as fast as lightening, climbing up onto the sofa, or standing tall in her crib on her own.  my list could go on and on, and you'll be reading plenty of those posts in the days and weeks ahead.

today, though, i accompanied my daughter to a Gymboree class where she was to play/interact/engage in physical activities with (in this instance, all typically-developing) children in the range of 10 to 16 months. Our most amazing physical therapist suggested she come along to help identify which activities would best serve emma during the class and what equipment (slides, stairs, balls, etc...) we should use to re-enforce her physical therapy objectives.

it was a beneficial exercise. no question.

but, watching my daughter sit or crawl on her belly in the middle of a mat with children months younger than her walking and runnning around (and sometimes nearly over) her was painful.

at least, it was today.

watching her, engaging her, i celebrated her tremendous strength, perseverence, and want to explore more, do more, see more. she's so inquisitive. but, i also felt a grief creeping up around me and wrapping around me like a familiar blanket.

and, if i'm an honest blogger and mama of an apple cheeks, i need to share that with my readers.

being a parent of a child with special needs is a special journey. it's one filled (as all others) with ups and downs, joys and celebrations, love and laughter.

but, also, as today, the occassional moments of grief.

a happy birthday wish from apple cheeks to her grandmommy

grandmommy:

since moments before i was born, you were there assuring my mama that everything - no matter what the outcome - was going to be allright.

you were there for six weeks straight after i was born to take care of me, of my mama, and my dada when we needed you the most.

you were there nearly every week these past 14 months to love me, attend therapy with me, take me to gymboree, go to the library, the museums, on walks, and music class.

you have traveled with me and shown me parts of the world i had not known before.

you have read to me, made me home-cooked meals, given me my medicines, and held me when i didn't feel well.

you have bathed me and rocked me to sleep at night. and, sometimes, you've been the first person i see in the morning when i awake.

you have given me more than i'll ever recall or realize years from now when i am older. but do not fear, grandmommy, because my mama and dada will make sure i always know:

the gift of you;

of your loving and gentle and kind essence.

of your smile in the face of adversity.

of your faith and hope and belief in the best in others.

of your selflessness of heart and spirit.

of your continuous patience and grace.

of your unfailing care of and for me.

thank you grandmommy.

on, this your very special birthday, i want you to know how much i love, treasure, and appreciate you.

love,

emma

a rainy day app for an apple cheeks

so, it's raining again in our neck of the woods. and, by rain, i mean gutter-busting rainfall 



and thunderous clap-clap-claps that compelled one of our doggies to sneak ever-so-quietly into our little apple cheeks' room to protect her and hide himself from the thunderstorm while she was napping (or at least trying to nap until she (and, then i) realized that there was a doggie in her room).

yet another day of rain drove us to resort to electronics to keep our little e fully engaged and active. (as i think i've mentioned in a prior post, emma doesn't watch TV, but she does watch Signing Time videos to learn sign/verbal language skills.)

this, after going over her physical and speech therapy activities, reading too many books to count, napping, playing with educational and just-plain-fun toys, crawling all over the house commando-style, playing with the doggies, singing songs, riding on her little truck, Rody Pony, and rocking elephant, and eating her breakfast and lunch.

so on this oh-so-rainy day, emma had fun experimenting with one of the iPad's Dr. Seuss reading apps (insert big shout out to grandmommy for facilitating this by sharing her iPad and said app).

the app engaged emma, prompted her to touch the screen to "turn" pages, learn the sounds of the letters of the alphabet, and listen to stories. such fun!

nostalgia

perhaps it's the rain that has me feeling all nostalgic today.

or the fact that our little apple cheeks now stands completely upright in her crib and shakes the bars and says maaaaaaaaaaaaaaamammmmaaaaaaaaaaaaaaammmaaaaaaaaaaaaaaaaaa when she's ready for her day to begin.

or it could be emma's pinchant for spitting food out and watching it fall to the ground; or for chasing the doggies until they move into a corner where she can't reach them; or for playing in their water bowl after commando "crawling" as fast as lightening when i turn around....

or, perhaps it's just the rain.

whatever the reason, i have been recalling how much emma has grown over the past several many months  -how much of an explorer and an individual she has become...

how she is no longer my baby girl, but has instead gone the way of an amazing, adorable, inquisitive, ever-surprising toddler.

take a week ago, for example, when emma learned in her educational therapy session how to hold a tiny toy bottle and feed a tiny toy baby, and then later that week grabbed her empty bottle (which, incidentally, she refuses to do on her own when it's time for her to have a bottle of milk) and tried to put it in my mouth and then her dada's mouth, with a little giggle.

or, yesterday, when we were practicing the letters of the alphabet with emma. my husband and i stated and then sang the letters of the alphabet to the letter "L", which we repeated with its sound over and over, and then used it in a word ("lemon") all while having emma look at a flash card that had a yellow lemon on it. quite suddenly, almost under her breath, emma said lemon (of course, not that precisely, but i know it was lemon because both my husband and i started to cry the minute she said it). and, then, she repeated it over and over again.

she's just such a big girl now!

so, in the spirit of sharing my rainy-day nostalgia for my baby girl apple cheeks, i thought i'd post a few photos i've been flipping through today. they are of our little e when she was just a whisper of a baby.

at the time these photos were taken, we had no idea how she could be any more amazing than she was in those moments.

but, she is.

and, i have a hunch, will continue to be each new day.

an apple cheeks summer photo montage

as we head into the long, Labor Day weekend, i wanted to recycle (and share for the very first time) some of my favorite photos of emma from Summer 2011 for your viewing enjoyment.

as you'll see, some photos are better quality than others but they are all included because they're just so cute.

-