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Showing posts from October, 2018

Your weekly Down Syndrome Awareness Month Digest

I'm having some trouble posting to so many places, so here is a summary of Days 7-14!  Thanks for all of your encouraging comments on this month of DS facts!  It makes it worth the effort! 💙💛 Day 7 DS Awareness: Embarking on the DS journey can be a roller coaster. It is our “framily” who keep us going when life throws some unexpected side trips, and who cheer with us during the many small victories. Thank you to everyone who has supported Evie for the Buddy Walk this year! We love you and appreciate you!   Starting out the Buddy Walk! Evie was overwhelmed by the loud cheering at the start line.  Day 8: An estimated 90% of moms with a prenatal DS diagnosis will choose to terminate their pregnancies. When I first found out our diagnosis, I had to search hard in general literature to find anything positive about having a child with Down Syndrome. Increased availability of non-invasive blood tests that can identify chromosomal defects could potentially eliminate people wit

Day 6 of DS Awareness: Evie is smart, and flash cards!

DS Awareness Day 6: Before I knew anything about DS, I thought that my child would not be smart. I could not have been more wrong. Evie continues to show me on a regular basis how smart she is. She’s asks to do flash cards at least three times a day. She knows all of her letters and her basic numbers. She can tell me which words start with a certain letter, and she’s only 3.  # nolimits   # evietheextraordinary Our favorite flashcards were passed on to us from another family on the DS journey.  They are awesome because of their large size and the sign language pictures on the back of each card! I don't see them on Amazon, but they are at babysignlanguage.com. This is the reference book from the same brand:  Our other favorites are: Evie also loves treating this Eric Carle matching game as flash cards (they make a great gift!). She is working on learning to make pairs to match the animal pictures. Happy flash carding, and Happy long weekend!

Days 4 and 5 of Down Syndrome Awareness! Reading books and Types of DS!

DS Awareness Day 4: When Evie was first born, I couldn’t even think about reading books to her amidst all the medical issues we were dealing with. But her daddy lovingly read books to her from her first week of life, and it has paid off. Evie loves books and has developed very strong opinions about which ones she wants to read. Yet another example of  # dontlimitme  and how Evie can do anything she sets about to do.  # evietheextraordinary DS Awareness Day #5: There are 3 types of Down Syndrome. There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4%, and mosaicism accounts for about 1%. No matter what type, the preferred way to refer to a child is not as “the Down’s kid,” but by their name and mentioning that they happen to have Down Syndrome. Evie is that feisty little girl with the button nose and dimples, who has a passion for music and swinging.  # evietheextraordinary

DS Awareness Day 3: Why Walking is so Hard

DS Awareness #3: Evie’s getting so good in her walker, that she surprised everyone in gym class by taking off to go tag her classmate during a game! Here’s a  # tbt  to the spring when Ms. Sassy Pants took off when I told her it was time to go home. She’s overcoming her hypotonia (low muscle tone) every day! With low muscle tone, walking or standing for long periods of time is hard work!  # evietheextraordinary

DS Awareness Day 2: Why Doesn't Evie Talk Yet?

DS Awareness Day 2: Why doesn’t Evie talk yet? Kids with DS have lower muscle tone, and how that affects speaking, walking, and eating varies widely. Evie has super low muscle tone, and this includes her oral muscles. She is learning now to move her tongue and says B’s, D’s and G’s pretty well. She loves practicing funny sounds with mama. When a good song comes on the iPad, she now makes noises like she’s singing along. Songs about daddies especially get her going on a Dada monologue.

Down Syndrome Awareness Month!

It's Down Syndrome (DS) Awareness Month!  On my 3rd year doing this, my goal is for the facts that I post to sound familiar to friends and family. I want you to think "I already knew that," because you learned from me before!  I want you to be able to share what you learned with other people you know, so that DS becomes a more acceptable part of our culture.  What is Down Syndrome?  Individuals with DS have an extra copy of the 21st chromosome.  They are more similar to everyone else than they are different.  Before the 1980's, the majority of people with DS were institutionalized.  It was standard procedure for a doctor to advise parents that their child was less than human, would have numerous medical issues, and would be better off in an institution.  Evie is our gift and I am so glad that we are not missing out on the joy that we have with her in our lives.  I hope you enjoy this video about a woman with Down Syndrome who was institutionaliz