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 with DS in certain countries. For me and Evie, our goal is to raise awareness and show the joy in being a homie with an extra chromie! 





 Day 9 DS Awareness: Since the 1970’s, public schools have had to by law provide a free and appropriate education to individuals with Down Syndrome. We already see the benefits of this, and evie is only in preschool! And apparently she likes chess! Thanks for supporting public school education. They are pivotal for our children and our future,no matter who they are or where they are.




DS Awareness Day 10: Being included is priceless. Evie is fully included in her preschool class with appropriate assistance so that she can participate. These include an aide for safety, a special chair for support, and an electronic communication device (NOVA Chat). Evie loves being included, and just blossoms when she goes to school! Scroll for your daily evie pic!





DS Awareness Day 11: Babies with DS often spend some time in the NICU for various reasons. Evie was admitted for heart defects, pulmonary hypertension, and failure to gain weight. Our NICU nurses were lifesaving in so many ways. Massachusetts is currently voting to restrict nurse to patient ratios. While I strongly support having quality care and safe boundaries (Evie’s nurses in the NICU had two patients each), the way that #1 is written would likely be more costly and impact healthcare access in a negative way. Imagine going to the ER and being told to wait or to try another hospital because they have reached capacity. I don’t know about you, but when I go to the ER for help, I like to be seen! Safe limits are important, but with such a sweeping change that gives only 37 days to enact, they need to write the regulation with more care for consequences.  Evie says, Vote No on #1!



Evie's first bath

DS Awareness Day 12: People with Down Syndrome are not always happy, contrary to popular belief. They have the same emotions as everyone else. And sometimes they are sad that Mommy is testing out Halloween outfits and the skirt is so poufy that it’s scary.



DS Awareness Day 13: Some kids with DS take longer to speak verbally. It takes a lot of coordination to move the tongue and oral muscles correctly, and their tongues tend to be bigger for their smaller facial structure. Evie can say a few words, but gets frustrated when we don’t understand her utterances or signs. She started an augmentative communication device called a NOVA chat this week. So far she is very pleased with it. We are getting used to carrying it around everywhere, but so far so good.




DS Awareness Day 14: People with Down syndrome attend school, work, participate in decisions that affect them, have meaningful relationships, vote and contribute to society in many wonderful ways. The book that Evie is reading in the photo is called “I Love You for You.” It teaches various animals that they all have their own unique traits, and each one is special. This message is especially important for Evie, but I believe all children (and adults) need to know that each person has their own unique abilities and contributions to the world. When we set apart others because they are different, we ALL lose out. 


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 institutionalized for 35 years and then became a renowned artist.

https://themighty.com/video/this-artist-with-down-syndrome-was-institutionalized-for-35-years-now-her-work-is-world-renowned/

Little newborn Evie with a bowling ball head--I was definitely keeping her!

Mommy Achievements and How To Support Evie

Guys. I had a huge breakthrough today. I actually did something the feeding therapist told us to do at home.  She had suggested putting food on Evie's tray to help her feel comfortable with finger foods around her, but to actually remember to do that and implement it is another story (along with all the other therapists' suggestions for various parts of her body).

This Labor Day weekend, I found myself with time to focus on her eating with the intent of being creative.  We started lunch time with a canister of star puffs. I told her I was putting 10 stars on her tray, and because she loves counting, she actually watched me do it. Then we proceeded to eat her pureed mac and cheese while singing the Hokey Pokey.  (If you want to know alternative body parts to sing to entertain yourself during the 20th verse, I'm happy to share.)   It doesn't sound like much, but Evie didn't cry or throw her star puffs, and was willing to touch them and put them back in the canister.  She even picked one up to put in my mouth, and chortled when I chewed it and said how good it was.  For a kid with a feeding aversion, this was a great meal.

Of course, then I turned my back and she took the whole canister of star puffs, dumped them on the tray, and reveled in the feel of many star puffs.   If you think this was a bad thing, it wasn't.  If she wants to play with any food at any time, it's a victory.  So we played some more in the fabulous world of star puffs.  

Finding this moment in time where we have nowhere to be, no agenda, and just time to work on star-puff-touching is a moment that caught me off guard.  Sometimes life is busy, running to school, work, therapy appointments, trying to help Evie to walk more, eat more, and talk more, and it feels endless. But a moment like this in which we were just enjoying the star puffs was priceless.
A moment when Mommy has given into bribery to get Evie to eat


Evie is going back to school on Thursday.  It's been a good summer, mostly full of summer school, but still full of summer activities and more time together as a family.

Cape Cod life.

Evie has been missing the routine of school, and I'm hopeful that she will make tons of progress in the fall in every way.  At our recent appointment to check Evie's ankle braces (SMO's), the orthoptist mentioned that maybe next time he sees us, Evie will be walking.  He said that he could see how much progress she had made in 3 months by the way she was walking with assistance.  I told him that if she is walking by November, I will bring him cake and throw a party in the exam room.  Here's hoping for a party!

Walking with assistance!
The fall also brings a key event that allows us to raise awareness about Down Syndrome and to include our family and friends in supporting Evie.  Evie's Extraordinaries is up for the 2nd year in a row!  The money raised from the Buddy Walk on Sunday, Oct. 7 will be given to the Massachusetts Down Syndrome Congress.  The MDSC has been instrumental in helping us and many other families with prenatal and postnatal diagnoses of Down Syndrome, as well as providing events for support like baby sign language classes and new family socials, and workshops for learning about the scary IEP process.  If you would like to walk with us or support us, the links are below.  It's a short walk around the lake in Wakefield, MA.

Here's the link to join our team or donate: http://mdsc.kintera.org/faf/donorReg/donorPledge.asp?ievent=1179869&lis=1&kntae1179869=EB5146D47EF5459EAFB73ABC6CB7DE40&supId=449041033 Choose the Register Here button, and then Register Multiple People option. From there, you can choose Join Team, and find Evie's Extraordinaries.  Let me know if you have any trouble!
The event information is here: http://mdsc.kintera.org/faf/home/default.asp?ievent=1179869
Anyone who walks or donates at least $30 will get a special edition 2018 Evie's Extraordinaries T-shirt!




Hope you all have a pleasant start to your fall!

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 th...