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Thread: What encourages you?

  1. #1
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    Question What encourages you?

    on days where your heart is focused more on your child's disabilities than his/her abilities and blessings?

    That is what I've been struggling with for a few days and one I know we all struggle with from time to time. I'd like to start a list for all of us to refer to on days like that.
    Hollie, Special Needs Forum Moderator
    Wife to my best friend Tom and mom to 18yo Eli, 17yo Kyle, and 13yo Noah (with Down syndrome)
    If a child can't learn the way we teach, maybe we should teach the way they learn. Ignacio Estrada


  2. #2
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    Hollie!

    I really hope I can make written sense out of what's floating around my heart and head. It's sort of a brand-new thought for me, so one that's not well rehearsed by many hours of pondering ... KWIM?

    Anyway, just last night, I was talking to Joel about his eating habits. He is just so darn picky and I'm at my wit's end to know how to feed the child. It's frustrating on several levels ... the biggie being Joel's health is affected by his poor eating habits, but also because it adds friction when his siblings see him not eating something that I'm "making" them eat. Also it is frustrating because I love to cook and (oh I hate to say this) he just zaps my joy in the kitchen.

    So, we were discussing this (calmly) and I mentioned again that perhaps we really needed to look into the Feingold diet or perhaps a GFCF diet. As a single mom, it is hard for me to make this decision because I know what sort of extra work it will bring for me. I *need* Joel's cooperation on it as much as possible. But as we talked about his diet and the possible need to try some new dietary changes, Joel made a statement that struck me to the core:

    Momma, I do not want to lose who I am.

    He went on to clarify: "What if I become somebody new ... somebody who doesn't love presidents and hurricanes? I like being able to memorize so quickly. I like being me."

    I guess what struck me is that so often I'm out to "fix" my son. Of course, I love him as he is, but so often I just want him to be normal that I'm burning my candle at both ends trying to help him get better. And really, to him, this is normal. He likes himself ... and God loves my son because He created him. And for the past 24 hours, this has brought me a great deal of comfort.

    I still might want to try a diet change because I'd like to have a son that didn't freak out about taking a shower, and one who could stand the taste of toothpaste. But I'm pausing to remember that Joel is also who God created him to be and I can rejoice in his beautiful personality.

    Hope that makes sense!
    Paige
    Happily married to Jon and raising a crew of five: Maddie (14), Joel (13), Megan (12), Nathan (11), & Julia (9)
    Focusing on the God's extravagance in 2013

  3. #3
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    Paige...

    I love that. For years, I have struggled with my middle ds, Paul. I wanted him to be socially outgoing, easier to discipline, easier to feed, easier to dress, less strong-willed, and frankly, more like my oldest ds. However, I had an "aha" moment when reading Snowflake Bentley last year.

    Wilson Bentley was most assuredly a "different" sort of fella, but he contributed to the world in a very real way. My ds Paul is for sure "different" from the norm, but he is who God made him and I need to love and encourage him for who he IS and not try and make him any different. He has challenges and heaven knows, he challenges me constantly, but he is also wonderfully sweet, loving, and completely God's creation.

    I decided to try and be more like Wilson Bentley's mom. She not only accepted his differences, she encouraged him, spent money on him, and loved him for who he was.

    Hollie, my boys don't have the same challenges as your children, but what encourages me is that I know for a fact God made them exactly the way they are supposed to be. It is my challenge to encourage their strengths and help their weaknesses.
    Esther wife to Steve, Mom to John Henry-16yrs, Paul-12.5yrs, Sam-11yrs and Lizzy-7yrs
    To teach children, you must love who they are, not what you want them to be. The Trouble With Boys, Peg Tyre

  4. #4
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    Hollie,

    Michelangelo was given a piece of marble discarded by several other sculptors for his famous masterpiece, David. He "found" the beauty lying beneath the surface. Like him, I try to remember that underneath all the outward behaviors that are so difficult to deal with, there is a sweet, loving, caring little boy who can melt your heart with his smile and keep you laughing with his silliness. That even though I may only be able to see the flaws, God made him a beautiful and unique creation within. I just have to "see" harder somedays than others.....

    HTH!

    Blessings!
    Suz
    "If there is righteousness in the heart, there will be beauty in the character. If there is beauty in the character, there will be harmony in the home. If there is harmony in the home, there will be order in the nation. If there is order in the nation,
    there will be peace in the world."

  5. #5
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    The Bible tells that God knits us together in the womb, that He chose to purchase our salvation before we were born, that He knew who and what we would be before we were born and that our every step is known to Him. I may not understand why it is necessary for my son to talk so loud and imagine rockets going off constantly (complete with sound effects and hand motions), but God does. DS was made to be just who he is. My job is to recognize who he is to become and help him to get there.
    Blessed to be Home With The Kids
    Logan (14), Hannah (11), Aaron (9), (Little One Eternally Home 2007), (Liam 5)

  6. #6
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    I have 2 of my 6 kids with special needs. An 18 year old developmentally disabled son and a 7 year old daughter with Aspergers. There are days when my heart hurts so bad I just go in my room and cry. But more often than not I love their simple ways of looking at life, their child like trust in God. I think, Lord, I need to be more like them not they more like me! Consider your self I understand.

    Sue C

  7. #7
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    One thing that really helps me is to have a core group of friends, some nearby and some long-distance that truly delight in my little girl...and on days when I'm finding that my own delight has worn thin, I can talk with them and that helps me see her through fresh eyes. My husband and I also play a game (started when we read "Spirited Child", I believe) where we try to re-name some of the things that make us crazy. For example, Anna really flipped out at the fireworks the last couple days, so instead of saying "She is such a wimp or why is she throwing such a fit?" we laughed and said, "Well, thank goodness ONE person in this city is safety conscious." And then we added "And isn't it wonderful that she can so passionately express her fear?" Focusing on her positives (or even on the negatives in a positive way) does help brighten our perspectives.
    The miracle is not that we do this work, but that we are happy to do it. ~Mother Teresa

  8. #8

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    What a great thread. Hugs to you all.

    I know I am usually having the hardest time when I compare. Sometimes it is comparing to typical kids sometimes other kids with down syndrome. I try to remind myself of something a doctor told me shortly after Ronnie was born. He said that everyone has their own instruction manual and time table that they will do things on. He has been proved right more times than not.

    I know God put Ronnie in our family for a reason and that she is doing things in her own time. I also know that God will provide me with the resources and insight I need to move through the challenging times and see her for the real joy she is. There is nothing like a hug and a kiss from that little gal or the pure delight over the simple things in life.

    Sorry for just rambling on. I have been sitting on the thought for a few days now.
    Christi
    Wife to Bryan, mama to Wheatley(18) attending Walsh University, Veronica(13)with down syndrome, Ephraim(8), and Loretta(5)

  9. #9
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    I love this thread.

    Paige, what a great reminder.

    Four of my five children have anything from a learning disability to ADHD to Autism spectrum to medical issues.

    This past year has been really overwhelming and has led to public school for some. It has been hard.

    The one thing that I find myself coming back to time and again in each situation is...

    focus on the strengths of each child

    For example, when you are doing homework with an almost 8 year old that still can't read, watching his frustration and his confidence dwindle in all areas, it is so hard to not show your own frustration and sadness. I have found that it helps us both if I praise every little thing he shows promise or improvement in.

    Each of my children have something special to offer!

    Lisa Schaffer ~ Wife to Tim since 1986... Mom to Sam, Clint-'92~'93,
    Jack, Trent, Cade, & Eli ~ GiGi to Caleb & The Twins-Alex and Uri

  10. #10
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    I love what all of you have shared. Thank you for blessing me and everyone who reads this thread.

    Christi, I do find that comparison is a problem sometimes. Lately, I've been seeing how far Noah is behind many of his peers--the ones who also have T21. I have really struggled with his speech delay and want him to "catch up" with his buddies.

    What do I do? One thing I do is what many of you have talked about--remind myself that he is Noah and exactly who God made him to be. I also will stop and spend time with him--letting him do something that really is fun. Lately, the Go Fish DVD is his favorite and he dances and mimics the singers movements. It is really cute and that brings me back into focus. I also spent time praying for God to give me peace as I wait for His perfect timing.

    Love you all.
    Hollie, Special Needs Forum Moderator
    Wife to my best friend Tom and mom to 18yo Eli, 17yo Kyle, and 13yo Noah (with Down syndrome)
    If a child can't learn the way we teach, maybe we should teach the way they learn. Ignacio Estrada


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