Nov 30, 2009

With a Little Help From My Friends

When Clayton came home from six and half months in the NICU, I was overwhelmed and I had tunnel vision. I had become consumed with his medical needs and my "former life" had passed away. And while our friends did everything they could to help us out (we wouldn't have survived without them), I still felt allienated from "regular" people. So it was quite a surprise when I came to depend on Clayton's therapists for my socialization. They were in our home four days of the week and although they were getting paid for Clayton's therapy, they soon became my confidants and therapists as well! To be honest, I wouldn't have made it out of bed on some of those days if it hadn't been for them coming to the house. They listened to me cry, get angry, talk non stop about nothing, and even let me catch some naps while they worked with Clayton.





So in March of 2007, my world was rocked when Clayton was finally well enough to go to clinic for therapy instead of staying at home. He was so ready for the social interaction, but I was not ready to give up my daily visits from my friends! For the first few months, I felt so lost during his therapy times. And when I picked him up, I felt like I needed to catch up that particular therapist on every single thing in our lives at that moment (while she was probably thinking "hurry it up, I've got another kiddo to see!").



It's been over two years since Clayton made the jump to therapy at the clinic, but I still miss seeing my friends each day. And much to their chagrin I'm sure, I still talk their ears off when I drop off and pick up Clayton each day. Fortunately, two of them live close by and don't mind a bit that our whole family enjoys their company! I'm just so thankful that the Lord brought such special and understanding therapists into our lives!


Nov 29, 2009

Thankfulness


Verily, verily, I say unto you, ye are little children, and ye have not as yet understood how great blessings the Father hath in his own hands and prepared for you; And ye cannot bear all things now; nevertheless, be of good cheer, for I will lead you along. The kingdom is yours and the blessings thereof are yours, and the riches of eternity are yours. And he who receiveth all things with thankfulness shall be made glorious; and the things of this earth shall be added unto him, even an hundred fold, yea, more.

(D&C 78:17-19)

Nov 26, 2009

All Things



Cultivate the habit of being grateful for every good thing that comes to you, and to give thanks continuously. And because all things have contributed to your advancement, you should include all things in your gratitude."

~Ralph Waldo Emerson

Nov 25, 2009

I Never Imagined

In 2005, I began scrapbooking furiously. I poured my heart into documenting our life (as we had come to know it), and journaling my feelings and thoughts. And from those labors, the "I Never Imagined" story was born. Here is how the album begins:




In the Spring of 2003, Brian and I learned that we were going to be the parents of twins. Not long after that, we were told that both babies were boys—twin boys! What a blessing! We knew our lives were in for a big change. But when the twins were born four months early (24 weeks gestation) on August 10, 2003, we never knew just how drastic the change would be. Shawn Phillip weighed 1 pound, 12 ounces and was 12 inches long. Clayton James weighed 1 pound, 8 ounces and was also 12 inches long. On that day our seemingly normal existence became the uncertain road that we now call our life. Both babies were extremely sick and every day presented new challenges—from brain bleeds to collapsed lungs, they battled it all. Clayton was the sickest of the two—his condition seemed to waver between near death and not so near death. Shawn had bleeding in his brain, but seemed to be more stable. It was such a surprise when the doctors called us to the hospital on August 27 to tell us that Shawn had contracted a staph infection and they didn’t expect him to make it. We spent that night holding him tight and praying desperately for healing. Despite everything, we had to say goodbye to Shawn on August 28 at 9:35 a.m. Clayton continued to battle for his own life. He had many surgeries and contracted several infections. We lived in fear of losing him too. But finally, after six and a half months in the NICU, Clayton came home to us. He weighed just over 8 pounds and was still very sick. We made many more trips to the hospital over the next six months. Although Clayton is now stable, our life is far from normal when compared to most families with a two year old. This is just a glimpse of the life that I NEVER IMAGINED.



My perspective has changed over the years, but my journaling in that album was truer than ever for me at that moment in time. For the rest of the album, just check out the original blogpost.


Nov 24, 2009

Sign of the Times & RSV

Austin has chronic lung disease. Flu season and winter can be brutal for his respiratory system. But we have a secret weapon!


We have this sign on his stroller and diaper bag:

dont touch


When out and about everywhere from Disneyland to doctor's offices other parents inquire where I got it from. Our sign came from the makers of Synagis (RSV medication), but you can order them here. You can also read more about RSV and who is at risk on our blog.


    Nov 23, 2009

    Make Your Day Monday: Be Cool to the Pizza Delivery Dude

    Be Cool To The Pizza Delivery Dude

    Sarah Adams - Port Orchard, Washington
    As heard on NPR’s All Things Considered, May 16, 2005


    If I have one operating philosophy about life it is this: “Be cool to the pizza delivery dude; it’s good luck.” Four principles guide the pizza dude philosophy.

    Principle 1: Coolness to the pizza delivery dude is a practice in humility and forgiveness. I let him cut me off in traffic, let him safely hit the exit ramp from the left lane, let him forget to use his blinker without extending any of my digits out the window or towards my horn because there should be one moment in my harried life when a car may encroach or cut off or pass and I let it go. Sometimes when I have become so certain of my ownership of my lane, daring anyone to challenge me, the pizza dude speeds by me in his rusted Chevette. His pizza light atop his car glowing like a beacon reminds me to check myself as I flow through the world. After all, the dude is delivering pizza to young and old, families and singletons, gays and straights, blacks, whites and browns, rich and poor, vegetarians and meat lovers alike. As he journeys, I give safe passage, practice restraint, show courtesy, and contain my anger.

    Principle 2: Coolness to the pizza delivery dude is a practice in empathy. Let’s face it: We’ve all taken jobs just to have a job because some money is better than none. I’ve held an assortment of these jobs and was grateful for the paycheck that meant I didn’t have to share my Cheerios with my cats. In the big pizza wheel of life, sometimes you’re the hot bubbly cheese and sometimes you’re the burnt crust. It’s good to remember the fickle spinning of that wheel.

    Principle 3: Coolness to the pizza delivery dude is a practice in honor and it reminds me to honor honest work. Let me tell you something about these dudes: They never took over a company and, as CEO, artificially inflated the value of the stock and cashed out their own shares, bringing the company to the brink of bankruptcy, resulting in 20,000 people losing their jobs while the CEO builds a home the size of a luxury hotel. Rather, the dudes sleep the sleep of the just.

    Principle 4: Coolness to the pizza delivery dude is a practice in equality. My measurement as a human being, my worth, is the pride I take in performing my job — any job — and the respect with which I treat others. I am the equal of the world not because of the car I drive, the size of the TV I own, the weight I can bench press, or the calculus equations I can solve. I am the equal to all I meet because of the kindness in my heart. And it all starts here — with the pizza delivery dude.

    Tip him well, friends and brethren, for that which you bestow freely and willingly will bring you all the happy luck that a grateful universe knows how to return.

    Nov 21, 2009

    Be the Change




    everywhere you look
    you can write a book on what’s goin on
    everyone you know’s got to reap what they sow
    be it right or wrong

    ghettos flood
    there’s a hole up in the sky
    oil and blood
    tell me why oh why

    terrorstruck, look at us
    this isn’t what we planned
    you gotta take a stand


    dont forget that pride always goes before fall
    nobody’s free till there’s freedom for all
    as you sow, so shall you reap
    be the change that you want to see
    oh yeah
    be the change that you want to see

    every now and then
    you gotta bend to the way it is
    but be that as it may
    it’s not the way just cause they say it is
    (just because they say it is)
    on tv there’s just no reality
    all I hear is me, me, me
    what they sold, I’m not buying anymore
    no more war


    dont forget that pride always goes before fall
    nobody’s free till there’s freedom for all
    as you sow, so shall you reap
    be the change that you want to see
    oh yeah
    be the change that you want to see

    yesterday heard you say
    that theres nothing you can do
    wonder if you’d feel the same
    if it was happening to you


    dont forget that pride always goes before fall
    nobody’s free till there’s freedom for all
    as you sow, so shall you reap
    be the change that you want to see
    oh yeah
    be the change that you want to see
    right now
    be the change that you want to see
    see the changes start with you
    be the change that you want to see

    Nov 20, 2009

    "The Snowman's Song: A Christmas Story" special giveaway

    Giveaway closed.
    We loved reading all the comments...Hope all your children's dreams come true!
    Congratulations Miranda!


     Written by Marilee Joy Mayfield
    Illustrations by Tracy La Rue Hohn

    I received the book "The Snowman's Song: A Christmas Story"  to review over on my blog The princess and the monkey.  Sometimes a children's book is just as moving to an adult as it is special to the child.  As soon as I started reading this beautifully written and illustrated book, I thought of Kennedy, Chloe and the other special children in our lives that can not speak.  I felt a connection to the little snowman's mom, who tries to comfort her son when he is having trouble reaching his dream.  So many of us feel the frustrations and despair of our children.  We all long to see them be able to follow their dreams and hope they stay faithful.  In the story the little snowman finds encouragement to never give up on those dreams.

    "Even when there's no hope, you must see a star."

    He also finds, what we all want to see for our children, true friendship.  The child in the story shows so much compassion for the little snowman that it teaches children how to care about others no matter their condition.  I felt so moved by this story written by Marilee Joy Mayfield that I wanted to share it not only with the readers of my blog, but with the special families here on Kidz.

    I would love to share this book with a special family, and thanks to the generosity of Leaping Antelope Productions and the author, I have one copy to giveaway. To enter, leave a comment here telling us what dream your child is trying to reach and how you are encouraging those dreams.


    *This giveaway is open to all readers(and even the members of Kidz Krew) that are in the US or Canada.  Please make sure to leave an email so I can contact the winner.  To make this special the winner will be chosen by my little girl, Kennedy.  The winner will be notified by email and on this post.  This giveaway will end on 12/5, so that I can get this to the winner before Christmas. 

    If you do not want to wait you can purchase the book at http://www.snowmanssong.com/#  they even have matching greeting cards!  Also watch for an author guest post over on The princess and the monkey very soon.

    Thanksgiving Ideas


    Want something fun for the kiddos to do to celebrate Thanksgiving? Here are some cute ideas! Images are linked.








    Nov 19, 2009

    Hope


    "Hope is a state of mind, not of the world. Hope, in this deep and powerful sense, is not the same as joy that things are going well, or willingness to invest in enterprises that are obviously heading for success, but rather an ability to work for something because it is good."
    ~Vaclav Havel.

    Nov 18, 2009

    fighter

    sof and i are battling...she has the "never give up" thing going for her and i have the "you are my 4th kid and i will win" thing going for me.

    sofia had to fight in utero...and she certainly had to put up a huge fight once she was born with her little 3lb body in the NICU. that fight has gotten her through soooo much.




    that fight, is also, gonna get me sent to he funny farm. she's always been attached to me...but of late, it's been a constant need to be on me. and here's a bulletin...i have 4 kids and husband and my own stuff to get done, so sometimes it just can't happen.

    1 hour. 1 hour of making dinner the other night with sofia screaming at the top of her lungs ended in her finally settling down and asking, "hold you" and "pease"...and i guess it's true that all's well that ends well, because she's learning that i'm gonna win...and i'm learning that she's really stinking cute!!!



    {red nose courtesy of screaming}


    Nov 17, 2009

    Try This Tuesday: Hiking With Wheels

    My husband and I have always enjoyed visiting parks and recreation areas. And while we aren't avid hikers or backpackers, we have always enjoyed leisure walks on trails. When Clayton was little, this was easy to keep up--we just took turns carrying him. These days, he's simply too big to carry for that long. And although we were determined he would still get to enjoy nature, we weren't sure how to go about it. But this last week we made a discovery: paved "hiking" trails! We weren't plowing through rough and undiscovered terrain, but we were getting to enjoy the woods, streams, and animals without the fear of tearing up the wheelchair or having to carry Clayton ourselves.

    I've since discovered a couple of books on hiking in our state that have lists of several handicap accessible trails. We will definitely be checking these out for our family outings!


    Nov 16, 2009

    Make Your Day Monday: I.O.U.

    A little boy came up to his mother in the kitchen one evening while she was fixing supper, and he handed her a piece of paper that he had been writing on. After his mom dried her hands on an apron, she read it, and this is what it said:


    For cutting the grass:
    $5.00

    For cleaning up my room this week:
    $1.00

    For going to the store for you:
    50¢

    Baby-sitting my brother while you went shopping:
    25¢

    Taking out the garbage:
    $1.00

    For getting a good report card:
    $5.00

    For cleaning up and raking the yard:
    $2.00

    Total owed:
    $14.75



    Well, his mother looked at him standing there, and the boy could see the memories flashing through her mind. She picked up the pen, turned over the paper he'd written on, and this is what she wrote:


    For the nine months I nurtured you here
    while you were growing inside me there:
    No Charge

    For all the nights that I've sat up with you,
    doctored and nursed and prayed for you:
    No Charge

    For all the trying times, and all the tears
    that you've caused through the years:
    No Charge

    For all the nights that were filled with dread,
    and for the worries I knew were ahead:
    No Charge

    For the toys, food, clothes,
    and even wiping your runny nose:
    No Charge, Son

    When you add it up,
    the cost of my love is:
    No Charge


      When the boy finished reading what his mother had written, there were big tears in his eyes, and he looked straight at his mother and said, "Mom, I sure do love you."

      And then he took the pen and in great big letters he wrote:


    "PAID IN FULL"



    ~Author Unknown



    Nov 15, 2009

    Meeting Life's Challenges

    Meeting Life's Challenges
    Thomas S. Monson, “Meeting Life’s Challenges,” Ensign, Nov 1993, 68

    Just a month ago, while celebrating a national holiday, [a friend] and I found ourselves with our children and grandchildren in a swimming pool filled with warm water and with a breathtaking view of an azure blue sky overhead. Mostly we were keeping a watchful eye on the little ones, much like a mother hen tracks the movement of her chicks. I said to Elder Nelson, “Isn’t it interesting that even though parents are watching their children, we assume the need to give overall supervision of our respective flock of grandchildren.” We had a wonderful time watching children at play and listening to their expressions of delight.

    Then I noticed among those in the pool a father holding his severely handicapped son, moving the boy’s shrunken, tiny body back and forth in the pool. Other family members helped, and the lad obviously enjoyed the fun. He, however, was totally dependent. No sound of exuberant joy came forth from his lips, no splash of playful movement emanated from his almost lifeless limbs. Stricken as an infant with severe illness, he was left speechless, brain-damaged, and potentially a burden to loved ones. The boy’s grandfather said to me, “He is my grandson. All in our family love him. We enjoy his company; we respond to his needs. He is a blessing in our lives.”

    Soon the crowd began to leave the pool. Laughter and play ceased. A silence shrouded the scene as the afternoon sun began its descent and the chill air reminded me it was time to go. But this tender view of love and devotion remained with me.

    My thoughts turned to a place far distant and to a time long ago—even to another pool called Bethesda. The book of John describes what occurred there:

    “Now there is at Jerusalem by the sheep market a pool, which is called in the Hebrew tongue Bethesda, having five porches.

    “In these lay a great multitude of impotent folk, of blind, halt, withered, waiting for the moving of the water.

    “For an angel went down at a certain season into the pool, and troubled the water: whosoever then first after the troubling of the water stepped in was made whole of whatsoever disease he had.

    “And a certain man was there, which had an infirmity thirty and eight years.

    “When Jesus saw him lie, and knew that he had been now a long time in that case, he saith unto him, Wilt thou be made whole?

    “The impotent man answered him, Sir, I have no man, when the water is troubled, to put me into the pool: but while I am coming, another steppeth down before me.

    “Jesus saith unto him, Rise, take up thy bed, and walk.

    “And immediately the man was made whole, and took up his bed, and walked.” (John 5:2–9)

    Another scene of suffering and sorrow is found in the famous Tate Gallery in London, England. There adorns the wall of a much-traveled corridor a masterpiece entitled Sickness and Health. The painting portrays an organ-grinder with his monkey and a group of happy, healthy children frolicking and showing their amusement at the monkey’s antics. In the background is a small, pale-faced boy confined to a wheelchair, unable to play, unable to join in the fun of the other children. Feelings of empathy and silent tears of sadness overcome those who gaze upon the scene and sense the unspoken feelings of the sick boy’s heart.

    Who can count the boys and girls, the men and women, where sickness has left its mark, rendering strong limbs lifeless and causing loved ones to shed tears of sorrow and offer prayers of faith for them?

    Illness is not the only culprit that intrudes and alters our lives. In our hectic and fast-moving world, accidents can in an instant inflict pain, destroy happiness, and curtail our future....

    At times illness and accident take the lives of those whom they strike. Place and station, age and whereabouts make no difference. Death comes to the aged as they walk on faltering feet. Its summons is heard by those who have scarcely reached midway in life’s journey, and often it hushes the laughter of little children.

    Throughout the world there is enacted daily the sorrowful scene of loved ones mourning as they bid farewell to a son, a daughter, a brother, a sister, a mother, a father, or a cherished friend....

    [Those left behind] are sustained by the knowledge the skeptic rejects. They treasure the account recorded in Luke which describes that most significant event following the crucifixion and burial of our Lord and Savior Jesus Christ:

    “Now upon the first day of the week, very early in the morning, [Mary Magdalene and the other Mary] came unto the sepulchre.” To their astonishment, the body of their Lord was gone. Luke records that two men in shining garments stood by them and said, “Why seek ye the living among the dead? He is not here, but is risen.” (Luke 24:1–6)

    Against the philosophy rampant in today’s world—a doubting of the authenticity of the Sermon on the Mount, an abandonment of Christ’s teaching, a denial of God, and a rejection of His laws— true believers everywhere treasure the testimonies of eyewitnesses to His resurrection. Stephen, doomed to the cruel death of a martyr, looked up to heaven and cried, “Behold, I see the heavens opened, and the Son of man standing on the right hand of God.” (Acts 7:56)

    Saul, on the road to Damascus, had a vision of the risen, exalted Christ. Peter and John also testified of the risen Christ. And in our dispensation, the Prophet Joseph Smith bore eloquent testimony of the Son of God, for he saw Him and heard the Father introduce him: “This is My Beloved Son. Hear Him!” (JS—H 1:17)

    As we ponder the events that can befall all of us—even sickness, accident, death, and a host of lesser challenges, we can say, with Job of old, “Man is born unto trouble.” (Job 5:7) Needless to add, that reference to man in the King James Version of the book of Job encompasses women as well. It may be safely assumed that no person has ever lived entirely free of suffering and tribulation. Nor has there ever been a period in human history that did not have its full share of turmoil, ruin, and misery.

    When the pathway of life takes a cruel turn, there is the temptation to think or speak the phrase, “Why me?” Self-incrimination is a common practice, even when we may have had no control over our difficulty. Socrates is quoted as saying: “If we were all to bring our misfortunes into a common store, so that each person should receive an equal share in the distribution, the majority would be glad to take up their own and depart.”

    However, at times there appears to be no light at the tunnel’s end—no dawn to break the night’s darkness. We feel surrounded by the pain of broken hearts, the disappointment of shattered dreams, and the despair of vanished hopes. We join in uttering the biblical plea, “Is there no balm in Gilead?” (Jer. 8:22) We are inclined to view our own personal misfortunes through the distorted prism of pessimism. We feel abandoned, heartbroken, alone.

    To all who so despair, may I offer the assurance of the Psalmist’s words: “Weeping may endure for a night, but joy cometh in the morning.” (Ps. 30:5)

    Whenever we are inclined to feel burdened down with the blows of life’s fight, let us remember that others have passed the same way, have endured, and then have overcome.

    Job was a perfect and an upright man who “feared God, and eschewed evil.” (Job 1:1) Pious in his conduct, prosperous in his fortune, Job was to face a test which would tempt any man. Shorn of his possessions, scorned by his friends, afflicted by his suffering, even tempted by his wife, Job was to declare from the depths of his noble soul, “Behold, my witness is in heaven, and my record is on high.” (Ibid., Job 16:19) “I know that my redeemer liveth.” (Ibid., Job 19:25)

    Turning to our own time, let me share with you an example of faith, of courage, of compassion, of victory. It illustrates how it is possible to meet life’s challenges—headon. It exemplifies the ability to suffer physical impairment, endure pain and suffering, and yet never complain. Such are Wendy Bennion of Sandy, Utah, and Jami Palmer of Park Valley, Utah. Both are teenagers; both have borne similar afflictions. Their situations run almost parallel. Since Wendy’s battle has been of a longer duration, I shall speak today of her.

    Stricken with cancer at a tender age, subjected to long periods of chemotherapy, Wendy persevered valiantly. Teachers cooperated, parents and family helped—but the mainstay in her affliction has been her indomitable spirit. Wendy has brought cheer to others similarly afflicted. She has prayed for them; she has sustained them with her own example and faith.

    After completion of eighteen months of chemotherapy, a balloon-launching party was held in Wendy’s honor. The public media covered the event. One of the many balloons launched that day was found miles away by Jayne Johnson. It had landed in her backyard, and she discovered it just as she was starting her own chemotherapy treatments. She wrote to Wendy, indicating she had been feeling sad and frightened but that finding the balloon and the note inside—which told about Wendy, her cancer, and the completion of her treatments—had given her the strength and that Wendy was a real inspiration to her. Wendy said, “I think she was supposed to find that balloon so that she would know that it’s not the end of the world and that people do get better.”

    Though Wendy’s cancer recurred, and a second round of therapy was needed, this choice young lady has not wavered, nor has she shrunk from her course. Rarely have I witnessed one with such courage, such determination, such faith. The same can be said of Jami Palmer. They personify the words of the poetess, Ella Wheeler Wilcox, who wrote:

    It is easy enough to be pleasant,
    When life flows by like a song,
    But the man worth while is one who will smile,
    When everything goes dead wrong.

    For the test of the heart is trouble,
    And it always comes with the years,
    And the smile that is worth the praises of earth
    Is the smile that shines through tears.

    (“Worth While,” in The Best Loved Poems of the American People, sel. Hazel Felleman (Garden City, New York: Doubleday, 1936), p. 144.)

    There is one life that sustains those who are troubled or beset with sorrow and grief—even the Lord Jesus Christ. Foretelling His coming, the prophet Isaiah records: “He hath no form nor comeliness; and when we shall see him, there is no beauty that we should desire him.

    “He is despised and rejected of men; a man of sorrows, and acquainted with grief: and we hid as it were our faces from him; he was despised, and we esteemed him not.

    “Surely he hath borne our griefs, and carried our sorrows: yet we did esteem him stricken, smitten of God, and afflicted.

    “But he was wounded for our transgressions, he was bruised for our iniquities: the chastisement of our peace was upon him; and with his stripes we are healed.” (Isa. 53:2–5)

    Yes, our Lord and Savior, Jesus Christ, is our Exemplar and our strength. He is the light that shineth in darkness. He is the Good Shepherd. Though engaged in His majestic ministry, He embraced the opportunity to lift burdens, provide hope, mend bodies, and restore life.

    Few accounts of the Master’s ministry touch me more than His example of compassion shown to the grieving widow at Nain: “And it came to pass … that he went into a city called Nain; and many of his disciples went with him, and much people.

    “Now when he came nigh to the gate of the city, behold, there was a dead man carried out, the only son of his mother, and she was a widow: and much people of the city was with her.

    “And when the Lord saw her, he had compassion on her, and said unto her, Weep not.

    “And he came and touched the bier: and they that bare him stood still. And he said, Young man, I say unto thee, Arise.

    “And he that was dead sat up, and began to speak. And he delivered him to his mother.” (Luke 7:11–15)

    What power, what tenderness, what compassion did our Master thus demonstrate! We, too, can bless if we will but follow His noble example. Opportunities are everywhere. Needed are eyes to see the pitiable plight and ears to hear the silent pleadings of a broken heart. Yes, and a soul filled with compassion, that we might communicate not only eye to eye or voice to ear but, in the majestic style of the Savior, even heart to heart.

    His words become our guide: “In the world ye shall have tribulation: but be of good cheer; I have overcome the world.” (John 16:33)

    He lives. He will sustain each of us. May we keep His commandments. May we ever follow Him and merit His companionship, that we may successfully meet and overcome life’s challenges, I pray humbly, in His holy name, the name of Jesus Christ, amen.

    Nov 13, 2009

    Fun Ways to Help With Inclusion

    Ever since I watched Including Samuel, I've been thinking even more about special needs inclusion.

    I read this post by Devon of The Daily Dakin awhile ago. She pointed out that one of her son's favorite television shows has two characters in wheelchairs. Her readers made comments of other shows/books that also include children in wheelchairs. I think this is a great, simple, and fun way to teach your child, whether special needs or not, to be comfortable with the fact that some children have special needs. Here are the recommendations:

    Handy Manny (TV)
    Manny's friend Sam is in a wheelchair, and is included to some degree in every episode.



    Miss Bindergarten (book series)
    Lennie Loom, the lion, is in a wheelchair and is a student in the kindergarten class


    Little Bill (TV)
    Little Bill's friend, Monty, is in a wheelchair


    Do you know of any other shows, books or movies that help teach inclusion? Please share!

    Nov 12, 2009

    Whole


    Are you having a girl or a boy? That seems to be the most often asked question when you're expecting a new little one. Those who don't have a preference might respond with something like: "We just want a healthy baby" or "we don't care as long as it has 10 fingers and ten toes..."
    I probably would have agreed- before I had Caleb. When we were expecting Caleb, we knew his brain was missing the corpus collosum, but other than that, we had a limited amount of information. I remember the day that a doctor called me after viewing the results of an in-utero MRI. He casually told me that Caleb was missing one of his eyes.

    One eye. Caleb only had one eye. Over the next few months, it seemed that every time we learned something new, something else was missing. When Caleb was born, we soon found out that he was missing his brain. That information wasn't the most devastating.
    "You'll likely have weeks before his death...take him home, there is nothing more we can do" was the most devastating.

    It didn't matter what was missing. It didn't matter that he wasn't a healthy baby.
    I couldn't bear the thought of missing him....
    Caleb isn't incomplete. In fact, he is more whole than I am.
    I love every little part of him.
    I wonder what I'll say the next time I'm expecting and I'm asked my preferences.
    Perhaps I'll just answer that I'm profoundly thankful for the privilege.

    This past week I took my 4 year old Caleb on a walk.
    I took a picture of him over the top of his stroller.

    10 little toes...

    Perfect.

    Just like he is.


    Nov 11, 2009

    Emma's Story

    My name is Kristina and I live in Delaware with my husband Chris. We have 2 children, Julia and Emma. You can read all about our family on my blog How Life Happens.


    I was sick for all 9 months while pregnant with Emma. Even so, I was thrilled to find out that Emma was a girl! I think it's great for a girl to have a sister and I was so happy Julie would get to have a sister!


    Emma failed the newborn hearing screening in her right ear. Everyone told us it was probably fluid in her ears and not to worry. So, I didn't worry at all and thought that the worst thing we would be told is that she is deaf in one ear and that she would learn to compensate with hearing out of her other ear. After about a month we had her hearing checked again and she didn't pass either ear. Many tests later we found out that Emma was deaf the day before Thanksgiving, when she was 6 weeks old. When she was 3 months old we found the cause of her deafness was a CMV exposure, and that set us on our path of where we are today.


    I was sad, angry and felt pretty guilty that it was me that passed the virus onto Emma. I did a lot of crying but eventually realized that I'm completely and helplessly in love with Emma and that we'll do whatever is necessary to make her life easier and sitting around crying and feeling sad would not get us the help we needed. Chris was upset, too, but handled the whole situation better than I did. He has always had that attitude that we'll make sure Emma is the best Emma she can be and that this must be the path God meant for us and we will all be just fine.



    I prayed a ton. I still do. I also started reading blogs by parents, joined a couple Yahoo Group list-servs, and sought out other parents in the community with special needs children.

    Emma's official diagnosis is Congenital CMV resulting in profound hearing loss (Emma is deaf) and spastic quadriplegic cerebral palsy. I had never heard of CMV before I had Emma and am now on a mission to inform every person I know about CMV. Please visit Stop CMV for more information on how to prevent CMV-related birth defects and spread the word to anyone you know who is considering or is already pregnant.

    Emma receives the following interventions: Physical Therapy, Occupational Therapy, Speech Therapy, Auditory-Verbal (for her cochlear implant), Early childhood education, Therapeutic Riding, and Craniosacral Therapy.



    Emma is an amazingly happy little girl who inspires everyone around her.


    Right now we take it one day at a time. Emma grows stronger each day and we hope that we will have to child-proof the house soon! We also believe that her cochlear implant will give her access to spoken language and that she will start to communicate through words in the near future.


    My advice to other parents is to enjoy your child for the unique qualities they have and live in the moment. It's easy to get caught up in the what-ifs, the milestones not met, the unknown, but it's so much more rewarding when we let go of our expectations and enjoy our children for who they are.


    Resources I recommend: John Tracy Clinic, CICircle, and CP Moms Yahoo group.

    Nov 10, 2009

    Try This Tuesday: Sensory Rooms

    Hello I am Amber and I am one of the Kidz Krew members. I am a SAHM of 4 wonderful kids. Each of my children are a blessing to me and each one hold there very own unique design about them. Trey is my Good Helper and loving big brother, Jordan is of course my lil momma sassy girl girl, Lance is my feisty athletic type, and Brandon is my angel on earth, my special needs baby.



    All of them have shown me great things in this life and because of them I am a better person. So who am i now well lets see..... I am Amber I love to read, blog, be with my family, and love life in General. I am great to talk to I love to be able to help others. I have been happily married to the man of my dreams for 6yrs now. We live in the country in a small town called De Queen, Arkansas. Its nice and peaceful and not alot goes on here but I love small towns. If you would like to know more about me or my wonderful family please stop by and view my sons site.....www.prayforbrandon.org and feel free to drop us a note.

    I wanted to share with you something I posted awhile back on Brandon's Blog.

    Well as some of you may have heard we have been accepted for Make a Wish program. Part of the wish I want is called a Sensory Room area. I found some really cool videos on this and will share them with you soon. I have seen how sensory rooms effect Brandon because we have certain areas in the house like his bed we have a twilight turtle a friend bought him for his birthday that lights the room with stars...









    We have a seahorse that another friend got him that plays music and sounds like bubbles and water.













    He has a music box with all different sounds that help him feel relaxed and calm




    He is light sensitive and visually impaired so dimmed areas of the house with a movie or not bright lights make him happy.

    At school they have different areas for him they call it his quiet area where he goes when too much is going on and he gets upset. They have different feel and touch things on the wall, they have a mirror just different things for him. I love that and with a house of 6 I think he will benefit from this if we had a area in our house for just him.

    So let me explain what a Sensory Area Room is :
    a place where your child can go to relax, explore, and find new ways to communicate.


    I got this from this site to help you better understand what a sensory room really is:


    By the term "sensory room", we are talking about a specific room, with specific sensory equipment and activities, to benefit specific sensory processing difficulties. The room must be tailored to one's specific sensory needs just the same as, for example, you purchase a mattress and/or pillow. Some people will prefer a firm mattress and firm pillow, some prefer a soft mattress and soft pillow, and some prefer a combination, soft mattress with a hard pillow or vice versa.

    Although a sensory room will be tailored to address an individual's unique needs, (and ideally would be set up with input from a knowledgeable professional such as an occupational therapist) there is also certain equipment which can have therapeutic sensory system effects on most anyone.


    There is a lot of good information on that site that is very helpful to you if you are more interested in.



    Its a therapeutic way of learning while in a good frame of mind. To me it would be like a day in the spa for us. So just watch the videos and find out how you can do this for your children to. Oh just a reminder I only want a part of a room made for him like this the rest I have other ideas for the rest of it lol wait and see them on the next post.





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