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#1
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For all special needs kids parentshttp://www.youtube.com/watch?v=vpOprrQfryo See the child With the golden hair Yet eyes that show the emptiness inside Do we know Can we understand just how he feels Or have we really tried See him now As he stands alone And watches children play a children's game Simple child He looks almost like the others Yet they know he's not the same Scorn not his simplicity But rather try to love him all the more Scorn not his simplicity Oh no Oh no See him stare Not recognizing the kind face That only yesterday he loved The loving face Of a mother who can't understand what she's been guilty of How she cried tears of happiness The day the doctor told her it's a boy Now she cries tears of helplessness And thinks of all the things he can't enjoy Scorn not his simplicity But rather try to love him all the more Scorn not his simplicity Oh no Oh no
__________________ Mom to an 12-year old boy with Lennox Gastaut Syndrome; on the ketogenic diet since June 2004 and AED free Being happy doesn't mean everything is perfect, it means you have decided to look beyond imperfection. Last edited by Dutch mom; 04-16-2009 at 05:12 PM. |
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#2
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| Wow!! What a powerful and moving song!! This really portrays the injustice of a world that doesn't have enough compassion for the burdens people carry and the ways special children and mothers alike suffer every day as a result. I also wanted to share a poem that someone sent during a similar discussion on the epilepsy foundation site. It focuses more on mothers of special children, and is not as deeply profound of a portrait, but is still very heart-warming: "The Special Mother" by Erma Bombeck Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. "Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity." "Forrest, Marjorie; daughter. Patron saint, Cecelia." "Rutledge, Carrie; twins. Patron saint, Matthew." Finally He passes a name to an angel and smiles, "Give her a handicapped child." The angel is curious. "Why this one God? She's so happy." "Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel." "But has she patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it." "I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy." "But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!" "I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side". "And what about her Patron saint?" asks the angel, his pen poised in mid-air. God smiles, "A mirror will suffice." |
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#3
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| Well, you both made me cry at work. Happy? I am. We truly are blessed aren't we? Thanks for helping that fact before my eyes. |
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#4
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The Woman in the Mirror We could collect these special needs parents poems and texts here in this thread. I'm sure most of us know 'Welcome to Holland' and other 'famous' ones but there will be new parents reading them to who these will be new. Katie's mom: Emma Bombeck's last scentence about the mirror made me think of one I've posted before in the Creative Writing Page (social groups on CWE.) I'd like to add this one here because it has brought tears in my eyes many times. Reading it always makes me have a look in the mirror, I seed myself again and again but in different periods in this story. Rackelsmom: You have to get your kleenex before you start reading. Yes, we're blessed. But are they...? Quote :
__________________ Mom to an 12-year old boy with Lennox Gastaut Syndrome; on the ketogenic diet since June 2004 and AED free Being happy doesn't mean everything is perfect, it means you have decided to look beyond imperfection. Last edited by Dutch mom; 04-17-2009 at 05:18 PM. |
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#5
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| Thank you Dutch mom. That was just beautiful. I can relate to that woman. The one who is comforted by hope, and is led by faith through the night into a peaceful calm day where the sun shines and my child laughs, unaware that others percieve her as different. She is blessed. God has shined His love on her and she is filled with joy that other 8yo's I know don't seem to possess. And when she is truly struggling to do something new, she reminds me that in Heaven she will run on streets of gold and will be able to voice all the thoughts that here on earth are locked up in her head, for now. I believe since she has struggled so hard here that there will be a very special place for her and all the other children like her. |
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#6
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| Dutch mom/Cheryl, what a thoughtfully-crafted composition! You have written such a touching testimony to the special calling of the special mother. It is an honor and responsibility whose tribulations will never be fully recognized and whose rewards will never be fully reaped in the fallen world we live in but through faith we learn that it will ultimately be redeemed by the Almighty in the life everlasting. So often I think of the passage, "whoever would be the greatest among you must be the least and servant of all" I think that it is also a wonderful idea to start this thread as a collection of special texts. I love Ann's imagery of the child running joyously through the streets of gold!! Wonderful words of hope, Ann!! This reminds me of a post from another epilepsy foundation mom who said: "They call em, Angel Babies. Here to teach, not to learn! I truly have learned a lot from my little one. But one day, joy unspeakable will happen when they receive their glorious new bodies that are completely healed. The Lord has lent us these special children of His to take care of and learn from. I know He carries them when they can't go another mile, and me, too. Praise to Jesus! So.... We press on with our greatest hope to come and our small miracles with us, awaiting His return. " Again, thanks for the inspiration!! Last edited by katie's mom; 04-20-2009 at 11:16 PM. |
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#7
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| Wow, the lyrics to this song are very touching, and really resembles my lowest functioning autistic child. |
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#8
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Sue Stuyvesant's 'Where are the parents?'Quote :
Where Are the Parents? By Sue Stuyvesant Where are the parents? They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed. They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy. Where are the parents? They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet. They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters and switching oxygen tanks. Where are the parents? They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering: is this the time when my child doesn't pull through? They are sitting patiently, in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child. Where are the parents? They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of there own. Where are the parents? They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves. Where are the parents? They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything. They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families. They are busy, trying to survive.
__________________ Mom to an 12-year old boy with Lennox Gastaut Syndrome; on the ketogenic diet since June 2004 and AED free Being happy doesn't mean everything is perfect, it means you have decided to look beyond imperfection. Last edited by Dutch mom; 04-25-2009 at 03:22 PM. |
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#9
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| Oh wow, that is really good. I bet a lot of foster parents can really relate also.. I know as a former foster parent and mom of 7 with several special needs we sure can relate to that. |
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#10
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| Dutch Mom, Wow! That really hits the mark, I have an IEP meeting today and believe that this would be a good thing to pass on to our joke of a meeting facilitator. He fought tooth and nail to keep Rachel in public school and then when I finally brought in the big guns and got her into an appropriate placement, he fights to move her back with every meeting. Thankfully the staff at our new school is very skilled in dealing with him. I just find it such a disgrace that they would place someone with so little compassion to be in charge of special needs children's education. Perhaps this will open his eyes... |
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#11
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| Here's another poem from: http://www.all4jake.blogspot.com/ No offense to Dutchmom about the Holland vs. Italy allegory, but I still think it's a good one, country names aside!! WELCOME TO HOLLAND byEmily Perl Kingsley. I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. "When you feel like giving up, remember why you held on for so long in the first place."~ Unknown |
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#12
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| Absolutly no offence, Katie's mom, off cause I - and I guess most Dutch specials needs moms- do know this text by byEmily Perl Kingsley. Did you know there are 2 follow ups? These do catch the differtent stages of emotions and acceptation we go through during the years, Follow up, part 2 Quote :
Part 3, I like this one in particular, because I've been to Ireland too, being a Dutch special needs mom from Holland and being mom to his twin siblings. Quote :
__________________ Mom to an 12-year old boy with Lennox Gastaut Syndrome; on the ketogenic diet since June 2004 and AED free Being happy doesn't mean everything is perfect, it means you have decided to look beyond imperfection. Last edited by Dutch mom; 05-09-2009 at 08:45 AM. |
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#13
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Welcome to Holland A woman who is dear to me sent me this and I feel compelled to share. My daughter and I live in "Holland" now, and we have come to love it here, but in Heaven, my little Dutch girl will speak Italian! WELCOME TO HOLLAND by Emily Perl Kingsley. c1987 by Emily Perl Kingsley. All rights reserved I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. |
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#14
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| Such a beautiful & poignant metaphor, Dutchmom & Ann. Thanks for giving it this attention & sharing! Katie is still in Holland for now, but she still has a fighting chance for Italy - which is a gift that I never truly appreciated until our trip to Holland. Katie's experience with epilepsy has been a life-changing and faith-defining journey for us. It has helped me believe that God will always take everything that the world tries to throw at us and use it for a good that we can't always see, but will matter tremendously in the life to come. I just have to believe that there is a higher purpose for all of the pain and the biggest challenge of all is learning to believe that even when it doesn't seem possible at all. Last edited by katie's mom; 05-26-2009 at 11:23 AM. |
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#15
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I am the Child I AM THE CHILD (Author Unknown) 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 strife's 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.
__________________ Mom to an 12-year old boy with Lennox Gastaut Syndrome; on the ketogenic diet since June 2004 and AED free Being happy doesn't mean everything is perfect, it means you have decided to look beyond imperfection. |
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#16
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A prayer for all I pray you enough sun to keep your attitude bright no matter how gray the day may appear. I pray you enough rain to appreciate the sun even more. I pray you enough happiness to keep your spirit alive and everlasting. I pray you enough pain so that even the smallest of joys in life may appear bigger. I pray you enough gain to satisfy your wanting. I pray you enough loss to appreciate all that you possess. I pray you enough hellos to get you through the final good-bye. Wish I could take credit for the prayer above, but I can't...it was forwarded to me by a friend. But I thought about all the dedicated parents and caregivers here and thought that it was more then appropriate to share. So this is my prayer for everyone on the site.....I pray you enough. skilly
__________________ "Watch your words, for they become actions. Watch your actions, for they become habits. Watch your habits, for they become character. Watch your character, for it will become your destiny." Epilepsy 101 |
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#17
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| I am working and helping disabled person. If I have a free time, I definitely surf on different forums in how to sustain the needs of disabled person. I think this song can enlighten the mind of every disabled person. |
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