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family life with a twist of Down syndrome

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Contributor of the book “Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives, 10th Anniversary Edition”

Top Posts & Pages

Seven Annoying Things About Having a Baby With Down Syndrome
Reflecting on a diagnosis a year later
Free Printables
The Physical Characteristics of Down Syndrome
A Forgotten Anniversary
What I've Learned So Far in the First Six Weeks About Having a Baby with Down Syndrome

Today is World Down Syndrome Day! We celebrate on March 21st because Down syndrome occurs when there are 3 of the 21st chromosome, which happens at conception. So for World Down Syndrome Day this year I will give an update on Gigi. In the past I felt compelled to spread awareness about Ds but lately I’ve been posting less and less about her and Down syndrome in general because these days we are just living our normal lives. Gigi is, in many ways, your typical 5 year old. She goes to school in an inclusive setting with mostly typical children and a few who have special needs. She takes the bus home; the ride is about 30 minutes. She’s getting ready to read! She often speaks in full sentences and is completely aware of everything you say, so never assume that you can speak in front of her and that she won’t be listening and absorbing. Yesterday Carina was complaining to Lia that she would spend her birthday cooped up in the house. Gigi leans over, hugs her, and says, “Don’t worry, Carina, I won’t let you down”. I can’t wait to see what her plan is to not let her down today, but in all likelihood she forgot about that promise. This morning at breakfast Lia wanted to lick the whipped cream bowl but Gigi said, “It’s Carina’s birthday”. So now you know who’s boss. Gigi can dress and undress herself. In fact as I was writing this I told her to go get dressed. Before I knew it she was back with her shirt (backwards), socks and pants on. However, she didn’t change her diaper (I didn’t expect her to). Yes, she’s still in diapers, so we definitely have our challenges with her. She wants one of her parents to sleep with her at night too. She has times during the day where she moans and drools for stimulation which can really wear on your last nerve. She has the sweetest disposition. Always complimentary, telling you that she likes your hair or shirt or your head. Gigi often uses please and thank you. But don’t get me wrong, there are times when she doesn’t want to listen. (More in link in profile) #wdsd #wdsd2020 #downsyndrome #trisomy21 #nothingdownaboutit #upsyndrome #theluckyfew #morealikethandifferent #downsyndromeawareness

Thrilled to get out yesterday. #downrightperfect #downsyndrome #trisomy21 #nothingdownaboutit #upsyndrome #theluckyfew #quarantine

Our first day out of at least 42 of quarantine and this happens. Her favorite toy. 😭 Help #Hasbro ! #babyalive #downsyndrome #thisis5 #theluckyfew

Gigi does yoga regularly at school so we tried it out today. She knows yoga! This is her first official day at home although I've kept her home since Thursday due to a cold. Is it a bad sign if mommy's borderline insanity causes her to try kid's yoga too? She said I was doing it wrong. 🤣 #bored #theluckyfew #morealikethandifferent #downsyndrome #yoga #cosmickids #quarantine

Indoor skating lessons on 18x36 inches of synthetic ice. #nothingdownaboutit #upsyndrome #theluckyfew #morealikethandifferent #downsyndrome #skating #bauer

"Mom, curl my hair." #theluckyfew #morealikethandifferent #nothingdownaboutit

Gigi had her annual Snow Ball dance at school tonight. "I can't wait" she said this afternoon. When I picked her up she said she danced, made a snowman and snowflake craft, and ate pizza and juice. I doubt the pizza thing because there is no evidence of pizza anywhere on her so we're having a late dinner. #downrightperfect #downsyndrome #theluckyfew #nothingdownaboutit #upsyndrome #morealikethandifferent #inclusion

This lucky girl is loving her sisters' stash of princess dresses. #downrightperfect #morealikethandifferent #disneyprincess #theluckyfew #snowwhite

#sisters #theluckyfew #nothingdownaboutit #upsyndrome #downsyndromeawareness #downrightperfect

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three with a twist

family life with a twist of Down syndrome

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