downsyndromeawareness

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    Inclusion Driven by a Pinewood Derby Race

    This school in Pennsylvania read my book, “Kelly and the Great Pinewood Derby" about Kelly, a boy with Down syndrome. They read the book to the entire Kindergarten classes. Now they have started building derby cars. The superintendent of their district was on hand to help cut the cars! Here he is with Drew!! This is so cool! They are getting prepared for a pinewood derby race they will have in honor of World Down Syndrome Day.

    #downsyndrome #downsyndromelove #downsyndromeawareness #koala #Bullying #childrensbook #Kellyandkelso #Friendship #Kindness #Downrightperfect #trisomy21 #TheLuckyFew #t21 #stopbullying #Inclusion #SpecialNeeds #Books #Book #booksforkids #kidsbookstagram #booksforchildren #childrenbooks #childrenbookillustration #childrensillustration #kidsbookswelove #bookswelove #lovethisbook

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    Now what?

    #DownSyndrome #downsyndromeawareness #DevelopmentalDelays
    Today was one of those days where I found myself asking "what next?"  We were at the park with two of our three kids. Our oldest who is nearly 21 and has Down Syndrome and our youngest who is 8. Our 8 year old ran around the park doing her thing. Our oldest picked a swing and I pushed her. Over the years I have seen the posts about the very high functioning people with Down Syndrome getting out of high school, going to college, becoming models etc etc etc. And that's .... super. But it's harder to find the stories from parents whose kids are not so up there on the scale. Last year, before the pandemic, she was involved for a time with a local organization that gives the adults with cognitive delays a place to go. Perhaps they went to volunteer some place, maybe they went bowling, maybe they just drove around and got food. They did something to get out of the house so their caregivers could go to work or take a break. Those are the stories we don't hear about. It only lasted so long, and she refused to go. Now, she's home. Every. Damn. Day. And I can't leave her alone because she doesn't understand, please don't microwave metal. Please don't consume soy sauce. Please don't take a walk by yourself. She needs someone to watch her. And asking for respite care is not as easy as all that. And our family is limited.
    We are one of those families whose kid falls into the category of not so high functioning so they don't make it into a tv show or land a modeling contract. I have nothing against those individuals whatsoever.
    What I have a problem with is that while it's great to want to show the world that a label isn't everything, at least show the world that that label holds many different variables.
    And some of us are left with trying to figure out what happens to our loved ones.
    I'm tired.
    I'm concerned. I go over game plans in my head.
    Financial concerns are one thing.
    But it's the love, the support. The real human connection that she'll lose when we die.
    Because the fact is, she barely has it now while we're alive.
    The world is consumed with feel good stories about the person with the disability who conquered it all and is giving TED talks about the power of positive thinking and not feeling sorry for yourself.
    But it's not nearly concerned enough about recreating a society that needs to make room for people who aren't keeping up with the rest.
    I need a break. And taking that break is impossible while I'm not only fighting her challenges but fighting an uphill battle to raise an awareness to disability.

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    WDSD Treat Bags

    We have had so much fun making these treats for my sons’ class to raise awareness! #WorldDownSyndromeDay #DownSyndrome #downsyndromeawareness

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    My baby Kinda ♥️

    Please follow my girl’s Instagram blog.. instagram.com/kinda.kilany
    we document her journey with #DownSyndrome through pictures and videos ♥️
    #trisomy21
    #downsyndromeawareness
    #nothingdownaboutit
    #NotBroken

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    Down Syndrome Clothing

    There are lines of clothing that have been developed by and/or for individuals with Down syndrome.

    We have struggled in a few areas with AJ when trying to find clothes as well. Pants are often too long, while shirts are too short. All of those cute two piece outfits that come together? Forget it - his top and bottom are definitely not the same size.

    In part this is due to his shorter stature, which is common in people with Down syndrome. It’s also due to his low muscle tone. The lower muscle tone results in his belly sticking out further, as the muscles in the abdominal wall relax more than most people’s do.

    NBZ apparel is a clothing brand that was developed by the grandmother of a child with Down syndrome. They feature pants that have shorter legs, lower fronts that read below the belly, and higher backs.

    Add to this that fine motor skills can be difficult for people with Down syndrome. Things like doing buttons can be incredibly challenging.

    There are a number of brands who have been adding adaptive designs to their clothing lines. Lands End and Tommy Hilfiger have adaptive lines that use magnets beneath buttons, so clothing has the appearance of being buttoned but is much easier to get on and off.

    —-

    #DownSyndrome #trisomy21 #downsyndromeawareness #SpecialNeeds #adaptive #AdaptiveClothing

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    See the Momma Behind the Child

    For Down Syndrome Awareness Month, be aware of the Down syndrome momma. The momma that loves her child unconditionally but struggles from time to time with a life she didn’t expect or ask for. Nevertheless she is her child’s greatest protector, advocate and champion. She persists when the world tells her it just isn’t possible because she knows anything is possible when it comes to her child. The Down syndrome momma’s heart softens to those around her that are different or in need while her spirit finds a strength and determination she never knew she had. She is exhausted mentally, emotionally and physically in a way she could never describe but still somehow finds the energy to advocate, write letters, read new research, try new therapies and schedule appointments all for her child. Be mindful of the Down syndrome momma that keeps a smile on her face that hides her struggles. She doesn’t want your sorrow, pity or disingenuous comments but she desperately wants your understanding, support and friendship. She finds it hard to balance celebrating the absolute joy her child brings her whilst admitting that life with Down syndrome can be hard. Very hard. The Down syndrome momma doesn’t want to change her child but she will do everything in her power to make sure the world changes for them. This Down Syndrome Awareness Month, take a moment to see the momma behind the child. Original words written by Baskets of Love Down Syndrome Support Society. @basketsofloveds

    #takingthescenicroute #MoreAlikeThanDifferent #DownSyndrome #downsyndromeawareness #downsyndromelove #downsyndromerocks #TheLuckyFew #downsyndromeisbeautiful #chromosomallyenhanced #homiewithanextrachromie #seetheability #alittleextra #designergenes #upsyndrome #nothingdownaboutit #t21 #trisomy21 #shouttheirworth #differentisthenewnormal #luckiestmomsever #lifeisbetterwithyou #WouldntChangeAThing #basketsofloveds #DownSyndrome #downsyndromelove #WouldntChangeAThing #lifeisbetterwithyou #TheLuckyFew #T21Club #takingthescenicroute #nothingdownaboutit #nonprofit #spreadinglove

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    #downsyndromefacts #ndss #Love

    The average life expectancy for a person with Down syndrome is nearly 60 years old. Some people with Down syndrome have lived into their 80s. #Life #DownSyndrome #DownSyndromeDiagnosis #downsyndromeawareness #Friends

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    World Down Syndrome Day 2019

    Every night I lay down having a grateful heart. I am humbled daily by various demonstrations of love and faithfully count my blessings.
    My heart is especially full tonight because of all who showed love and support to Savannah by “Rockin’ their socks” today for #WDSD ! (See my stories on instagram.com\Ladypositive 🙌🏼)

    Spreading awareness helps to educate so many, like me, that just three years ago didn’t know much about #DownSyndrome . I definitely wasn’t aware there was a day to honor it globally!

    The negative stereotypes associated with DS makes me angry! Those lies are what instilled fear in me after our prenatal diagnosis!
    I want to let you know that there is nothing scary about Down Syndrome! It isn’t a negative thing! It doesn’t make anyone less worthy! Individuals with DS still thrive and become anything they want to become! They have purpose and I will spend the rest of my life shouting their worth!
    These beautiful lives enhance others they encounter, including this momma!
    I wrote a blog post shortly after Savannah was born that transparently shared how while I was still pregnant, I desperately prayed God would heal Savannah. I also used these crazy apps to try to determine what Savannah would look like after putting photos of JR and I in it. At times, my mind was overwhelmed with fears of the unknown and the negative scenarios my specialist told me only added fuel to the fire consuming me.
    Here is the answer to all the questions that exhausted my mind.....
    God makes no mistakes. Savannah was the one used to purge me of discriminations I didn’t even realize I had. Savannah, Alexis, and Ava have made me see life in a more beautiful, fulfilling way. Life isn’t about what we tangibly obtain... it’s about who we become! So while I prayed for healing, I received it. I was the one who needed it, not Savannah.
    God is so good and has blessed our family with a miracle.... that miracle’s name is Savannah Lanier White! .
    .
    #SavannahLanier #RockYourSocks #DearMom #SheChangedMeForTheBetter #Love #Kindness #BeTheChange #PositiveVibes #downsyndromeawareness #advocate #AdvocateLikeAMother #nothingdownaboutit #IWillShoutYourWorth #TheLuckyFew #Momlife #Momblogger

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    From the darkness

    Waiting for my two year old to start smiling again was one of the hardest things I've ever done. He is fighting B cell Acute Lymphoblastic Leukemia. He is definitely a warrior. #teamreadyfreddiego #downsyndromeawareness
    #Cancer