A Child's Letter

I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of -- I see that as well. I am aware of much -- whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me. I do not give you rewards as defined by the world's standards -- great strides in development that you can credit yourself; I do not give you understanding as you know it.

What I give you is so much more valuable -- I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am the child who cannot talk.

I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again. I am dependent on you in these ways. My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who cannot walk.

I am the child who is mentally impaired. I don't learn easily, if you judge me by the world's measuring stick, what I do know is infinite joy in simple things. I am not burdened as you are with the strifes and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.

I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child.

- Author Unknown -

We're Back from the Beach

Home sweet home. We had a wonderful week. Back to reality.

Summer Love

I am trying hard not to think about vacation coming to an end.  We've had lots of good together time, sunshine and  great food; haven't caught up on sleep or reading but that's life I guess! Here's a little snapshot of what we've been up to:

Have a great weekend. We'll deal with the evil thought of unpacking and the dirty laundry some other time. But for now, we're off to to the beach again:)

Here Comes the Sun...a Family Vacation

A beach vacation sounds absolutely wonderful right now. Who better to share it with then a lot of my cousins and my aunt and uncle. I love the ocean. We visited Hilton Head last summer and were lucky enough to be invited back. There is nothing better than taking a break from reality, having a slower-paced week therapy-wise, and throwing in a little chaos of five families bunking in the same beach house! We are armed with our sunblock and that's what we've got planned. (that and basically eating tons all week long) Hope you have an exciting week.

Picture Perfect Picnic

Yes, that's a TWIZZLER and a Pretzel Stick in the above pix. LJ didn't like the texture of the pretzel stick, but he liked pretending to feed them to Mommy :) I also got to eat some plastic spaghetti! All good signs that he enjoyed playing and exploring.















And isn't our new friend, baby D, such a ham for the camera.  His smile was contagious!

A "Talker" and a "Walker"

LJ walking in his Pony gait trainer

Hopefully he'll be both a talker and a walker soon! LJ got his communication device which we're now calling his "talker"! LJ loves to hear my voice when he is able to press the corresponding buttons. And Nate has been extremely curious about it since it has a voice recorder (it can easily be erased by toddler hands & there doesn't seem to be anyway to "lock" the editing function), pictures and still has that new toy allure. Nate quickly advises us to quick! "Get Noodles' talker" when we can't figure out what he wants. I have had many trips to Staples to laminate wallet-size photos and restock my velcro fasteners for our binder of vocabulary. The "ACC" takes a lot of organization on my part since there's not a built-in vocabulary base- we have to make all of the little 2 x 3 icons that go on the communication device. (ACC stands for Augmentative Alternative Communication) It is also a little difficult for LJ to press whichever quadrant he is interested in. He clearly is "getting it" with the cause and effect, we just need to work with him on his motor control skills. On that front, at least, he is starting to clap his hands YAY and also does the baby sign "All Done".

Big, clunky four-way communicator (it can go all the way up to 16 images)

LJ also started a group-based therapy this week which is ironically called "Hungry Hippos". He meets with the therapist once a week through PIE already and she thought it would be a great way to have Noodles "play" with food without it being a threatening environment. So without any pressure, LJ and another little boy get to have a "picnic" on the FLOOR which is staged at the therapist's clinic, and we get to follow their lead. They watch each other explore and see food from a totally new perspective. The premise is that if the kids are hungry and not pressured, they might be more apt to taste things. There were watermelon cubes, pirate's booty, pirouette cookies and avocado to examine. I brought a blueberry muffin and my water bottle to the picnic and LJ promptly crumbled the muffin to pieces and then ground them into the picnic blanket.

Interestingly however, both boys had the same initial reaction. Though LJ favored feeding the food to an Elmo doll, neither  little "A" nor LJ was happy to stay on the picnic blanket. In their own way they both objected to the food and a crying chorus began. It should get easier each week as they will start to gain their trust in the situation & learn new behaviors; but for now, understandably, Lewis was protecting himself from something (oral aversion to all that medical intervention) that has always seemed to be a threat.

Nate enjoying the pool

In other news, LJ got a splint made for his right hand.  The splint is cocked at an upward angle to keep his wrist resting at an upward angle so his fingers can stay more relaxed. Wearing it on and off for several hours a day will in turn hopefully help improve his fine motor capabilities.  He did NOT like fireworks, but rather enjoyed the ice cubes from the beverage cooler.  Nate is having a wonderful summer and is so looking forward to visiting with his cousins over the rest of the summer.  We've had plenty of outdoor time with camp and the pool, and we finished out the day today with some arts and crafts projects (LJ got in on the finger painting action but seemed more enthusiastic about washing his hands afterward).  Music therapy continues to be a favorite, with LJ starting to vocalize some "A" sounds....Nate has also shown great interest in LJ's feeding therapy and asked to participate with the feeding today. He was allowed to feed his baby brother every other spoonful. He is also great at helping his baby brother interact with the world! Three words. Proud big brother!!

Up next week: post-opp appointment with the ENT and a new therapist will start coming to the house through early intervention- its an early childhood educator who will be working with us on helping LJ develop his receptive language, expressive language and engage in other activities that will boost his cognitive development.  Hopefully I will remember my camera for the picnic and will share them next week.

Happy Independence Day!

It's the Fourth of July tomorrow.  I'm predicting LJ is going to LOVE sparklers.  I hope you enjoy the 4th with friends and family....bbqs and fireworks...we sure will be!!

The Honey Jar

LJ's Honey Jar_OT with Cathy Fox 6/25/2010 from Jenn S on Vimeo.

Highlights of Our Ch-cha-cha-changes

It's almost been one week post-op.  Here are just some of the highlights from the past week. LJ's hearing is much improved. He loves to hear my phone ringing, maracas shaking, Daddy singing, and he's even rediscovered playing with some of his old toys. He's not so fond of Tango barking, Nate melting down or construction trucks beeping all day long. His throat is recovering from the adenoids nicely and spoon feeding sessions resumed yesterday. (they've been awesome today with Noodles being able to swallow every bit of the 2 tbs each meal) He's still partial to the sweet potatoes (which we've doctored with brown sugar) over the green bean purees but what kid wouldn't! LJ's breathing also sounds a lot clearer- no more junky sounding breathing. It's really so clear that I almost thought he wasn't breathing because he was so quiet the other day. One other milestone is that LJ can now wave hello and goodbye to people with such purpose!

We had a Father's Day BBQ to let our daddies know how much they are appreciated. ( I think Nate actually ate three helpings of this coffee cake with Haagen-Dazs ice cream...that's how much he loves his Daddy.) Oh, and our farm share has officially kicked off with all sorts of yummy zucchini, chard and blueberries.  I even made a delicious vinaigrette of garlic scapes, Dijon, honey, balsamic and olive oil for salads and dipping.  It's ridiculously good.

Nate has been out of school.  Summer camp starts next week so we've been enjoying what little unscheduled time we have at the pool.  He's so proud (as are we) that he learned to dunk his head underwater.  Nate has also participated twice now, in LJ's music therapy sessions- which might be more aptly named "dance parties". And we've played in the sandbox in our backyard.

LJ has pretty much been fussy and off-routine since surgery.  He's been partying at night- usually around 1am for about an hour or two. And that's after we finally get him to go down at about 9pm. Wake up time has been anywhere from 5:45am to 9am.  So by Monday we were all a little bit fried and in need of some zzz's. Didi came on Tuesday and gave a much-needed respite & giving Nate some requisite one-on-one time.  Nate has really come thru all this just beautifully but he was starting to get over it as in "Please pay attention to me now!!".

But, this is all to be expected.  When I think about how much LJ has been hearing just in the last week, he is undoubtedly on sensory-overload. On top of that, he LOVES his walker.  He can spend more than an hour in his Pony gait trainer...exploring...opening and shutting doors...opening kitchen cabinets...feng shuing the dining room...taking toys from the living room to his room for safekeeping...unrolling the toilet paper in the bathroom. LJ's 4-level communication board will be here in a few weeks. We'll see how it goes and then we may look into getting an Ipad with a special, augmentative communication application called a proloquo2go. It's been getting a lot of good reviews lately and it's much more portable than the average communication device but the downside is Early Intervention won't pay for it.

And we're also getting a new caregiver.  Sadly, our awesome caregiver had given her notice while we were in NJ.  She is getting married at the end of August and then going back to school fulltime. Nate cried when he heard about it:( Needless to say I've been busy interviewing and now training a new caregiver.  Things are moving right along. More soon!

We're All Ears

Ear tube surgery is a breeze. Adenoidectomies a little more difficult...and sitting in hospital waiting rooms even harder, but we just got home safe and sound. Surgery was at 8am and we were admitted to the PICU for the afternoon.  Luckily we were discharged and didn't have to stay overnight. Right now we're grateful for a little Tylenol with codeine (a devoted Didi, wonderful doctors and amazing nurses). Thank you for all your prayers of healing and strength. We're all looking forward to recovery and tomorrow is a new day filled with new adventures.

“Survival and thriving. These are the poles between which the moments of our lives are strung.  The balance is tenuous, and the outcome for each of us is different. Yet we mostly start with the same raw stuff: skin, a mother, food, shelter, breath, and each moment as it unfolds — one after the next — right now. From these all the intricacies of our lives are made. No matter who you are, your day is occupied with the small repetitive tasks of living,  and it’s in these moments that we’re shaped; even as we’re dreaming of other things.”

— Christina Rosalie, A Field Guide to Now

"Turning On" LJ's Ears

We've just started our official journey to the (better) hearing world. After many months of fluid in LJ's ears causing moderate hearing loss and many, many auditory tests, his ear tubes/adenoidectomy surgery is scheduled for this Thursday. We've been patiently waiting ever since the test at St Joe's confirmed that it should help. Our first surgery date was May 24th which was then postponed until June 1st.  A bunch of snafu's later, here we are.

I've oftentimes wondered how LJ's voice will sound and what it might feel like to hear him saying "Momma", "Daddy", "Doggy", "Nate" or "Mine!". He's been so quiet ever since he was a baby (except for a good pension for crying) and now we understand that its probably because he never had the reinforcement of hearing himself cooing. To him, everything has probably sounded like it's garbled underwater.

I hope that he gets to hear the whirl of a fire engine whooshing down the street...or mommy singing him a lullaby...or Nate telling his baby brother how much "he loves him more than all the people in the town". I hope this procedure is going to give him the ability to start communicating orally. We've been trying to teach LJ some baby sign language but he seems limited by his motor function. It has got to be so frustrating to live in a world where people do not understand you. That's just me projecting all my neurotic, mommy worries on him.  Still, it's also our dream that this surgery could greatly impact his ability to swallow easier (removing his adenoids should help) and possibly eat like a normal, healthy toddler. We even wonder how much his balance will be improved- will it help him to walk or even sit in a propped position? We are so nervous about what lies ahead but at the same time we have so much hope.

Dreams

"If you are a dreamer,come in. If you are a dreamer, a wisher, a liar, a hoper, a prayer, a magic-bean-buyer. If you're a pretender, come sit by my fire, for we have some flax-golden tales to spin. Come in! Come in!"

~Shel Silverstein, Where the Sidewalk Ends

What Home Means to Me

comfort::Tango wagging his tail::bear hugs::tickle fights::cuddling all morning with my boys::managing some time with Josh on a date night::staying in my pj's all Sunday::reading stories::making goofy faces::taking a shower sans shower shoes with hot water::belly laughs::Josh making me coffee every morning::getting our therapy calendar straightened out::girls night out::Nate chasing fireflies::pretty flowers to liven up the kitchen::doctor appointments::and so much more!

The Boy is Back in Town!

Jenn invited me to make a special guest appearance today - it's been quite a while, here goes.

This was a big week for us. I joined Jenn & LJ in Paterson for the last couple of days of feeding camp and the trip home on Friday. We're in the middle of our first "normal" weekend for the last 6 weeks. Tango, Nate and I are very happy to have Mom and LJ back home. LJ is really enjoying sleeping in his own crib and Jenn seems to like our house somewhat better than her pied a terre in Paterson.

Overall, feeding camp was a success. It is very difficult to manage expectations going into a program like this. Even the experts have a hard time estimating exactly where things will end up. LJ didn't quite make as much progress as we'd hoped, but he's made significant progress. The goal going in was to have him eating 1 oz at each "meal", 3 to 4 times a day. We did reach that level a few times last week, but it is still a struggle. LJ has a hard time coordinating all the necessary movements to open, close and swallow while keeping all the food puree in his mouth. Away from the volume goals, there was significant progress in the more intangible parts of his "dining experience". LJ is much happier during meals than ever before, when he does get upset, he recovers very quickly.

Like any new challenge, practice makes perfect. We will continue to work on all the skills we've learned, with the help of a local feeding expert at Children's and video conferences with the team from St. Joe's. We'll also go up for visits from time to time to evaluate LJ's progress.

It helps me to put all this in the context. Not long ago, LJ would gag at the sight of a spoon. Any attempts at feeding usually broke down into inconsolable tears within a few minutes. Today, he has tried and will continue to work with 9 different purees that were introduced at camp, including a number of vegetables, fruits and soy yogurt. His meals are generally happy (if not too nutritionally productive, yet) affairs, including lots of smiles and playing.

We're moving in the right direction and we're happy to have the family together, at home. Thanks so much for everyone's support, we really appreciate it. Have a good week.

We Hear Your Silence

Hearing Your Silence by Donald Robin, Ph.D.,CCC-SLP

We don't understand

when we hear your silence

We can't see behind your frustrated eyes

when you plead for our attention

We are unable to feel your awkwardness

when you try to speak and the wrong sounds emerge

We cannot be inside you to will your tongue to move

when it struggles to find the roof of your mouth

We don't understand the fear that consumes you

when you are on the playground when you should be having fun

We are not privy to your brain that creates a world of words

only to have your muscles stop their meaning

We do not hear your mind communicating freely

only to have us look quizzically and ask for repetition

We cannot sense your joy at moments of clarity

only to have it rapidly disappear again and again

We do know who you are

when you look into our eyes

We can hold you tightly

when your fists clench and tears fill your vision

We will struggle with you each day and night

when you practice your speech sounds with great deliberation

We are proud of your trying

when we might just give up

We share with you your pain

when your mouth is tired and slow

You know that we will love you

when you are little and when you grow

You know that we will be there for you

when all seems dark and cold

You know that you are special and what you want to say

You know you are our children and who you are each day

You know your world is full and how to find the way

You know we hear your silence

You know we hear your silence

You know we hear your silence

(July, 2004 on the occasion of the First National Apraxia-KIDS Parent Conference)

Video-Feeding Camp Week 5

LJ has turned the corner from his awful flu/virus last week.  I am glad it is behind us and that his chest x-ray checked out fine.  But there have been too many highs and lows. For one, we missed several feeding sessions which seem to have set us back. We have been limited to juice and baby food in very small amounts ever since last Tuesday.  LJ is still having trouble managing his secretions but Dr. Eicher thinks we are ready today to put different textures back into the protocol again. And if we eat any more sweet potatoes I think LJ will turn orange!

The huge relief last week was the swallow study.  It holds such good prognostic value. There is no aspiration or misdirection of food.  His oral phase is slow and slightly disorganized still, but things do move smoothly through the pharynx.  Lew has the capability- he just needs lots and lots more practice and help. Only three more days to go! Nate is eager to feed his baby brother some yummy sushi now that 'he knows how to eat'.  I think we might have to transition to mac & cheese before sushi but that's just what I'm thinking.  What do I know? I am constantly reminded not to get too attached to the plan.  LJ is a brave and courageous boy!

What About Mac & Cheese or French Fries? St Joseph's_May 18, 2010 from Jenn S on Vimeo.

True Love

Bootcamp Day 20

Number of feeding therapy sessions per day: 4
Weight: 23 lbs 11 oz
Average temperature this week: 100.2
Variety of foods consumed: 5
Number of foods presented at each meal: 2
Daily medications: 3
Ounces of Hypoallergenic formula consumed each day: 32
Number of bootcamp days remaining: 5
Pass or Fail the Barium Swallow Study: PASS
Number of new teeth: 2
Generosity + kindness shown by our friends and family: more than we ever imagined....

Lessons from Feeding Camp-Week 4

LJ and I are closer than ever. To each other. To the finish line. Just closer to everything. This feeding thing takes time. Literally, it takes a lot of time (14 hours to complete all the tube feeds). And it takes a lot of tweaks to the protocol. So we learn lessons from all of these things. There's a lesson in hope. I'd hoped for more by the start of week four; but we're making little steps. His Nanny and Babu visited last week-arms full of hugs and smiles on their faces (and a break from all the quiet, lonely days). Nate and I played Battleship and Lego's & ate takeout all weekend.  Nate tells me he loves me more than all the cotton candy in the world. I love both these boys with all my heart.

With only two weeks left, things are still quite topsy-turvy. Present spoon - present positive reward- wait and give reinforcements only during latter half of a feed- only at the beginning - ignore - give attention - play. I'm learning this is a totally fluid thing- no pun intended! Currently at the moment LJ has come down with a fever and a raspy cough. This past Friday my email got hacked and all my files were deleted. Never a dull moment and on cue from LJ I've learned to roll with the punches.

LJ is trying so HARD. Despite still having some coughing, crying, retching episodes, his disposition is so sweet and he puts forth such a tremendous effort. It's tough to see other kids who are here dealing with a completely behavioral problem. The moms sit in the waiting room in between feeding sessions and share stories of the kicking, screaming and battles of the will. I silently think how much I would give to just have LJ even physically be able to take a bottle! The problems are so diverse here and I know my son is not the only one with the muscular limitations- a little girl C just graduated last Friday from the program and she used to have a Gtube and a Tracheotomy!  This was her 3rd "camp"....Lew has a will too. I'm certain he is a fighter.

The experts have kept Lewis on a sequence of "tastes" comprising puree of squash, then puree of sweet potato then some apple juice (or cranberry is also interchangeable). He always needs some type of chin support to help his mouth close down, his lips seal with the spoon and then swallow any puree. (see video from previous post). Inevitably some food always escapes...some with projectile than others! The team has also done THE "Hyoidglottal".  No kidding, the name of this chin hold is tossed around here as if it's the 21st century's dance to know! The hyoid are bones in the laryngeal area of the throat. Having the proper support there prompts the organizational pattern in order to swallow more effectively. LJ objects to this more than any other touches, yet some kids with sensory problems need the additional input. If they train me how to do it I am nervous I'll push the wrong bone and impede his airway! There's no escaping that fear thing is there? Doc still is not sure if they will keep the hyoidglottal in the game plan or whether to change it up yet again. So I won't have to worry about it for awhile.


LJ is still able to swallow some of the food, but he expels some of the food with every "taste". He has what they call an anterior-posterior swallow pattern (see article here). The key to feedings should be the placement of the spoon's bowl. The docs and therapists think he's amazing. How does he manage to spit the food out even when the puree is placed all the way at the back of the tongue? Why does it appear that some of the food is causing discomfort because it goes up his nose some times. We are going to have another Barium Swallow Study this Wednesday morning to see if it can help us with the game plan. I wouldn't say that the feeding team is disappointed with our level of progress because we are making our own little steps. At least he's not crying every time a spoon approaches his mouth! At least he is not arching backward all the time. At least we won't look back in twenty years and have asked ourselves what if we never reached this crossroad. We're a work in progress. Life is changing. That's the lesson I've learned.

LJ with the world's most patient + loving Feeding Therapist, A.M. (note: the two-way mirror in the background)

Mommy-hood

I made up this collage on word cloud art of all the characteristics that describe the unimaginable and challenging experiences I've had this year as a mom and daughter-and all the ones to come. It's an evolving thing keeping our hope as we make our way through the unknown. I am always working on it and learning- getting better and better at it each year. But I try to remember what is to be a mom and how fortunate we are. And it is an unwavering certainty that I say I love you Mom. Unconditionally. Happy Mother's Day to all you Mommies out there, wherever you are along your adventure.