when i was pregnant with Reed and we found out he had Down Syndrome my reaction was just "oh, ok". i did not feel like it was a big deal.
but of course i was worried (i was not worried about his health, that came later on when i started reading about DS and the accompanying health issues :) but i was certainly worried that people would not accept him.
i was not worried for now, i knew as a baby and toddler that everyone would love and adore him,
i mean who doesn't love babies?
i was worried for when he gets older, like when he starts going to school, especially the teenage years.
what if nobody wants to be friends with him, or no girl has a crush on him?
and man did i bawl at that.
but then i realized, i would worry about these very same things anyway even if my child did not have Down Syndrome.
so i calmed down.
we'll just deal with that when we get there.
right now we'll just continue enjoying toddlerhood, and all that stubborness that comes with it :) #inclusionmatters#countmein#choosetobekind#downsyndromeadvocacy#DSawareness#reedsworld#downsyndromelove#igtoddlers
Sixteen month old #Colt is a curious #toddler who loves music! Whenever he hears it, he follows the music to shake and dance. Life of the party! His developmental report was completed in June when he was 13 months old. At that time, Colt could raise his head when lying on his stomach, turn over by himself, and grasp his feet to play. He loved to tease people. He will stick is tongue out, make faces and laugh. When he’s excited he says things like, “Ah ba da!” He babbles in response to people. When he goes outside, he is very curious about his surroundings. He engages people with eye contact, and he can nod his head for “yes.” He is strong-willed, and if he doesn’t like what you’re doing, he lets you know! Colt is closest to his caretaker. He enjoys colorful toys that make sounds. Colt was diagnosed with #Downsyndrome , and he has had surgery to correct an #atrialseptaldefect . http://reecesrainbow.org/121916/colt #downsyndromeawarenessmonth#downsyndromeadvocacy#downsyndromerocks#theluckyfew#chdawarenessmonth#chdawarenessphotochallenge#babyboy
October is Down Syndrome Awareness month and to be honest i don't know what that means to me.
is it to let people know that my son has Down Syndrome? (seriously, clueless here)
now i see other mamas sharing information that educate people (family/friends/strangers) as to what Down Syndrome is and what it isn't.
but then i thought, why is that my responsibility?
i don't care what other people think.
but that of course is not what it's about.
in my perfect world Reed will be loved and protected.
for as long as i am alive Reed will be cared for and will be safe.
but we don't live in my perfect world
and i won't live forever.
soon Reed would want to seek adventures on his own
and though i can prepare him for the world
i at least have to try and do my part to prepare the world for him
Down Syndrome Awareness Month, Day 15, Advocacy: Emma is in a new class this year for one period a day. At the school's open house, I went to introduce myself to her teacher, and I thought she was pretty snotty to me and seemed very disinterested in telling me how she was incorporating Emma into the class, nor did she have any questions for me about how to do so. I was already concerned that, because Emma goes to the class with two other girls from her special ed class, they were being marginalized and ignored. (I had no reason for this concern, and I’ll share later how it was dispelled!) Fast forward to last week, when that same teacher came to Tricia's office, waited for her to finish speaking to another teacher, and with great emotion told Tricia how much Emma means to her because EVERY DAY she stays after class so she can tell the teacher, "I hope you have a good day!" It's a highlight in this teacher's day.
So the awareness is for parents like me, parents of teenagers who are quickly turning into young adults: we've spent years being their voice, being the person who parses every bit of information and every nuanced situation, the person who is always ready to kick some ass on our kids' behalf, but at some point our kids become their own best advocates. Emma didn't need us to complain to the principal or set up a meeting with the teacher. In this case, we just needed to take a deep breath and let her do her thing...because Love Wins! #Emmanence#DSAM2017#Downsyndrome#downsyndromeadvocacy#LIFEisbetterwithyou#lovehersomuch
Cute #Heidi is identifying her ABCs and is able to write her alphabet. With some assistance she is able to write numbers 1 through 10. She receives tutoring from in home teachers and participates in other various learning activities at home. Her speech has improved greatly, but she would benefit from speech therapy. She is verbal, but not everything is understood by those who don’t know her well. She speaks in sentences of 2-3 words in both English and her native language, and can name caregivers and other children in the home. She uses sign language to communicate things like wanting food, water, or the bathroom. Heidi is observant and reserved when getting to know new people, but she does warm up to people and likes to share with her friends. She is comfortable playing independently and enjoys coloring. She loves to help around the home and can often be found cleaning or helping other kids.
Heidi has a $5000 agency grant offered by a specific grant. #trisomy21awareness#trisomy21#downsyndromerocks#downsyndromeadvocacy#downsyndromeawarenessmonth#trisomy21princess#nothingdownaboutit#upsyndrome#theluckyfew http://reecesrainbow.org/121849/heidi-2
Little #Haidyn is only 1 year old and is an incredibly #adorable little boy. Just look at that little grin! Melt.my.heart into a puddle on the floor. Haidyn has #DownSyndrome and an extra digit on his right hand. Haidyn recognizes his name when it is called and rolls over independently. He holds toys in his hands and plays with them. He is a smiley little fellow and like his bouncy seat. This little guy needs a family! Could he be your son?
Haidyn’s current agency has a $4000 grant available towards his adoption fees. Can you think of any good reason this baby should wait for a family? Neither can I. http://reecesrainbow.org/121223/haidyn #trisomy21awareness#trisomy21#downsyndromerocks#downsyndromeadvocacy#downsyndromeawarenessmonth#downsyndromeadoption
As part of our participation in the Disabilities Works II conference coming up at Old National Bank, we were challenged to come up with something awesome for our booth. We decided on a video project on self-advocates with Down syndrome in the workplace, which is currently in the editing stage by our friend 3 Tree Films. In the meantime, we would like to thank all of the area businesses who employ our self-advocates. This is just the first in a series of posts about how #DSworks for Evansville and the Tri-State, so be on the look out for more information on how our self-advocates love their jobs in the community and how you as an employer might consider a more inclusive workplace by hiring a self-advocate with Down syndrome or other disability. Thank you for your time in reading this, and please share if you have a moment!!! Warmest regards, Nikki Warner Davis, SMILE on Down Syndrome Executive Director
Cute #Marcus is the definition of #adorable ! This sweet boy with his kissable cheeks and happiest little grin recently turned two years old. Marcus was born with #downsyndrome . He is an energetic little guy. When he would be laid down for a nap, he used to wiggle around to the point of trapping himself in his blanket. He knew just how to get out by giving a good cry to get his nanny to the rescue! Marcus appears to have a good attention span, and he will happily play, babble, or simply watch whatever is going on in the home. His nanny says that with his bright eyes and sweet smile, Marcus makes people want to cuddle and talk to him. http://reecesrainbow.org/120806/markus #theluckyfew#t21#t21love#t21baby#downsyndromerocks#downsyndromeadvocacy
I am both disgusted and disappointed with some people in this world! I know this will be perceived as religious or maybe even about rights, but I'm going to speak up! Yes, I was scared to death when I found out I would have a child with Down syndrome, yes, the world made me scared. If we would just have more compassion, more love and respect for human life, people wouldn't be afraid of being different. There wouldn't be so much hate in this crazy world! I'm ashamed of people who think babies should be killed because of their disabilities. What makes their own life worthy? Everyone's life is worth living! I cannot imagine our lives with out our Jordan Grace...she's full of life, full of joy, full of hope, full of worth!!! It's plain and simple, if someone doesn't want kids, avoid the obvious! If someone doesn't want to gain weight work out and eat well, it's common sense people. Where's the rights of all these unborn children??? Why should the rights of the person who doesn't want a kid over trump the precious life without fault? I'm sadden and sick to my stomach to learn of these horrible people (including the "professional" who pressured me to eliminate my own pregnancy) who think it's ok to just discard a life in the garbage like a piece of trash. BE KIND! RESPECT! INCLUDE! Get EDUCATED! 😊
Come along with me as I attend the #2017NDSC National Down Syndrome Congress conference in Sacramento.
Follow me as I attend workshops, man a booth (as Interim Executive Director for Lumind RDS), network, cultivate friendships, and have fun learning by following me at #marlaatndsc
People from all over the globe will be attending the #2017NDSC convention to hear the latest information in the world of down syndrome from world-renowned experts on how to care and support their loved ones with #downsyndrome . *
Parents and caregivers learn about how to advocate, educate and care for their loved ones with Down Syndrome.
While #selfadvocates come together to learn, and create friendships.
And siblings share about their life having a sibling with Down Syndrome.
From workshops, vendors, awards and dances. This will sure be the place to be next week.
Find us on Facebook
Down Syndrome Association of Laredo Our mission is to bring families of individuals with down syndrome together for educational, emotional and social support . We encourage and invite all members of our community and surrounding areas to our monthly meetings and/or events. #dsalaredo#advocacy#DownSyndromeAdvocacy
Malachi is home!!! I've prayed so much for this precious angel to come home to his amazing family! So to be present the moment he stepped off the elevator along with his loving mother, I couldn't help the tears from flowing. Knowing Jalena and Emmy has been such a blessing in my life! To watch her bring her son home today has filled my heart with all the goodness that we fail to see each day! Tonight as they sleep under the same roof in his forever home, I thank God for answering so many prayers! 💙 you are home sweet Malachi and you are so loved! 🦋
There's a mother somewhere out there with an appointment for termination of her pregnancy because she found out her baby would have Down syndrome. I read this last night and that precious baby and life hasn't left my mind, deep feelings of despair came over me, to the point where I shed tears in a way I hadn't in over three years. I couldn't sleep last night thinking of the unmeasurable love I have for our Jordan Grace and thinking someone being so scared that they may miss out on this precious being. My heart understands the fear, uncertainty and especially the deep dark hole one can fall into. But now that I'm a mother to this precious one, I was never told of how much joy, laughter, love and worry, just like our oldest, she would bring. I was only told of the negative and the scary! If you could say anything positive to someone who has just been diagnosed with a baby with Ds, what would you tell them?
We want Jordan Grace to know that she has Down syndrome, she came up with "It's cool" part. We want her to be proud of who she is, but not defined by her diagnosis. Each day she shows us what she's capable of and we are just here to support and love her, she makes it so easy! 🦋 don't forget to watch our friend @sean_from_born_this_way on @aetv tonight!!! ❤
I've been working on a book. I stopped writing for about two weeks because it became just so difficult, some chapters bring out all the emotions that bring me down to my knees and take me to that place of deep sorrow. It has been extremely therapeutic but also a bit humbling to open up about some of the feelings I haven't even shared with some of my close friends. Each time I'm about to write, I remove myself as the character and become the reader. I want to be helpful to those who have experienced this kind of pain, to be an advocate and to also be a source of support for anyone who may need or want to talk. So if you are following and need to chat with someone, please know I am here!
Yesterday I had the pleasure and privilege of speaking to student midwives at the #UniversityofBrighton . We were sharing birth stories and talking about the language used when a baby with Down's Syndrome is born. I just showed this picture to Audrey and she said "Daddy's wearing a hat. Daddy's holding a baby." Little does she know, this is Audrey just minutes old. At the time, my world came crashing down, but now I look at this picture and know it's when my world was changed immeasurably for the better. #awesomeaudreyemily#downsyndromeawareness#downsyndromeadvocacy#tellitright#downssyndromeassociation
❤️Porque es bella.
Porque tiene un gen extra y eso la hace brillar!✨
Porque las personas con síndrome de Down tienen mucho que aportar al mundo tomemos consciencia y abramos el corazón a la #integracion con infinito amor, respeto y admiración! 🕊
🙌🏻Gracias @fofuricesdebela por esta preciosa foto de Bela 😍
•LINK IN BIO
I finally was able to take time to finish the book #theluckyfew a couple nights ago. •
I was so encouraged by this book. Not because I have a child with Down syndrome but because God gave me the unexpected and asked me to embrace it. Boy oh boy, isn't it so much sweeter that way? That's really what the theme of this book is. Boldly stepping into what God is calling you to and watching him make it better then you could have thought up on your own.
Such a good read. If you are looking for encouragement I recommend #theluckyfew 100%!! •
• Still available for preorder and there are lots of awesome freebies that come along with it!
4 days until the release date (WDSD!!) so hurry!! 😉😉 •
LINK IN BIO!
"I get angry, understanding that we had let our culture taint us into thinking that Down Syndrome should go on the con list when it should have been one of our pros. Friends, Down Syndrome is only ever a pro." •
FRIENDS! I have the absolute privilege of being apart of the #LuckyFew book launch team!! I have been following @macymakesmyday on Instagram since shortly after I had Moses. In the beginning learning about Down Syndrome was very intimidating, but seeing the Avis family (via Instagram ) live a normal life while having 2 children with DS, was such an encouragement.
I am only 3 chapters in and I have been in tears more than once! The good kind! This book is not just about Down Syndrome. It is SO much more. I'll be giving updates as I read!
I encourage you to consider preordering this book so that you too can share in this beautiful story. Hits the shelves 3/21/17 ! World Down syndrome day!! #downsyndromeawareness#downsyndromeadoption#downsyndromeadvocacy#adoption#theluckyfew#downisup#nothingdownaboutit#heatherAvis#theAvisfamily
We are $580 shy of our $5,000 goal in support of @ndssorg an amazing human rights organization who service the beautiful community of people with #DownSyndrome and their families. We were fundraising in hopes of collectively creating a more inclusive world for all and one day being able to celebrate everyone's differences and unique ability. Can you help us? Even a $5 contribution from each of you would mean the world. Standing together there is nothing that we cannot accomplish. Thank you!! Lisa & Blake ((to all of you who have donated you have my eternal gratitude and respect)) 🌹💛💙 #Charity#Giving#Donate#SeeTheAbility#ShareThisPost#NDSS#DownSyndromeAwareness#DownSyndromeAdvocacy#Advocacy#AdvocacyMatters#AbilityParent#Disability#DSAM needed yesterday but put work for this community continues. X www.classy.org/Blake5for5 link also in profile.