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!!