Were towards the end of October, which means closing out Down Syndrome Awareness Month. On the 29th, we will be attending the Buddy Walk in Anaheim for Down Syndrome. We finally got our Adaline's Army shirts, and I can't wait to see how you guys rock them! We are so grateful for all of you who are apart of her army. It takes a village, and in this case it takes an Army. When I was pregnant, and shortly after her birth my biggest fear was how the public will view her and treat her as she grows up and become an independent adult and braves the world without her mama. And all of your love and support and encouragement has helped ease my anxious heart for her future. I Know there will be those who are just evil at heart and don't understand her beauty and value, but for every 1 of them there are thousands of you who love her.
While I try to keep my page uplifting and sharing the beauty of Down Syndrome, I also feel like it is educational to share the bad things as well. A lot of us mamas that use Social Media to show the world our kiddos who have a little something extra are just as "Normal" as the rest of us, have received some flack for only preaching rainbows and unicorns. They have actually classified it as a "Unicorn Fart". That we don't accurately display the trials of raising a child with "special needs". Soo...heres the thing. Yes, Down Syndrome comes with some scary not so magical trials. But doesn't parenting in general? Is it the medical treatments that are scary and need to be talked about more? If so... isn't it safe to say that all of us have some sort of health issue? Life threatening illnesses aren't only happening to children with Down Syndrome? And you don't see parents of typical kids saying that their children aren't worth it because they spend more time and money in hospitals making their child healthy than they thought they would. When you decide to have sex and get pregnant you're choosing to love and care for your child no matter what their diagnosis is. No matter how healthy they are or aren't.
We have been blessed with Adaline's health. There have been some minor issues but they have worked themselves out and so far she has never needed surgery or to be hospitalized longer than a night. I would say I'm more unhealthy than she is. The other things Ive read is that us "DS" mamas tell their kids they can do anything they want, "when that just isn't true". My question is why aren't we allowed to be as supportive and encouraging as other parents are to their kids. If I want Adaline to believe she can be a doctor or even president (though I would hate for her to have that job), I am going to make sure she knows she is capable of anything she wants to do. Because the reality is she's not going to be president, and if she doesn't want to be a doctor than she won't be. Our parents told us we were capable of being anything we wanted to be, and how many of you have been president, or governor for that matter? I won't stop pouring encouragement into my children and building up their self esteem just because SOMEONE things she isn't capable. The world is going to limit her, but I AM NOT. And just because she has an extra chromosome doesn't mean I'm going to love her less or encourage her less than her sister.
People with Down Syndrome are so happy all the time. They don't feel anger.
This could not be more false. Though Adaline is happy more than 50% of the time, she gets MAD. And her mad is uncontrollable. She feels emotion with all of her being. When she is happy it radiates through every inch of her. Her smile, her eyes, her body movements, her voice. But when she is mad, its INSANE. Sometimes its over absolutely nothing. She will just randomly scream at the top of her lungs if she doesn't like the shopping cart she's in.
People with Down Syndrome are your forever babies.
As much as I would love that idea, that is also not true. People with Down Syndrome grow up to hold jobs, get married, and move out of their parents house. There are cases (just like with typical people) that they need more help than others. Heck I am 25, married, and have almost 2 kids and still living a foot away from my parents in the back house. (Though that is due to the fact that California is OUTRAGEOUSLY expensive.)
Only older people give birth to baby with Down Syndrome.
Most children with Down syndrome are born to women younger than 35 years old simply because younger women have more children. However, the likelihood of having a child with Down syndrome increases with the age of the mother, especially after age 35.
Adults with Down Syndrome have the cognitive ability of children.
People with Down syndrome have a mild to moderate cognitive disability, or intellectual disability. This is not indicative of the many strengths and talents that each individual possesses. Sometimes it might take a person who has a disability a little extra time and effort to get things done or said.
There are different levels of Down Syndrome
This one is so funny to me. I understand how some can think that. I used to describe it as "more severe or less severe", but thats just not correct. Because Down Syndrome is a diagnosis based on the genetic make up (number of chromosomes), you can't be more Down Syndrome than another person. You either have Down Syndrome or you don't. And just like the rest of us, their intelligence and cognitive abilities vary. Im a huge proponent for being proactive with her therapies and education. * I personally think that people get this idea from comparing Adults now with Down Syndrome to this new generation of kids with Down Syndrome. You have to remember that 25-30 years ago, there were not as many resources and people didn't know as much as they do know. There are so many resources out there and communities. I believe we are going to see a HUGE revival in the work place and school place in this new upcoming generation of people who have Down Syndrome.
All People with Down Syndrome look the same.
This one makes no sense. People with Down Syndrome can be any race. White, African American, Asian, Hispanic. They can have brown hair or blonde hair. green eyes or brown eyes. Tall, or short, round or lean. Just because they may have the same almond shaped eyes, or flat nose, doesn't mean they all look alike.
Negative Comments We've Received about Adaline
I don't usually like to talk about these things because they get me so angry, but I believe if I share the negative things people say, then hopefully a parent reading this will feel inspired to educate their children on people with disabilities and together we are able to stop people like Adaline from being bullied later on in her life.
"Awww. Im sorry, did you know before you had her?" - This one may not seem very negative, but to me as her mother, I find it extremely hurtful when someone insinuates that I would have made a different decision on her life had I known before hand. And yes, I actually did know.
"So are all your kids going to be like Adaline?" hahaha.. Dear God I hope so. She was the easiest, happiest, newborn and is just the funniest toddler. And If I was only able to have babies with Down Syndrome, that wouldn't stop be from having them!
*This next one I didn't hear, my family member did when we were stepping off the plane*
"Mommy, that baby is so cute." "Yeah, but she has Down Syndrome". Wait what? what does that even mean? So what... what does her having Down Syndrome have to do with her being cute. This one still stumps me.
"What is it...bring your Retarded kid to the mall day?" -This is probably the only time (thus far) where I have reacted emotionally in person. First off... EVERYONE needs to stop using the R word. It is hateful and mean. Secondly, this woman must have so much hatred in her heart and life I can't even imagine. This happened to me in the line at Victoria Secret. She turned around, looked at me holding Adaline, and turned to her friend and made that comment. I may have called her some ungodly names, and turned around and left. Had I not had Adaline in my hands. God only knows what I would have done.
"People with Down Syndrome need to put down. They are just a drain on this world. When they are 60 years old and $h*ting themselves and our taxes are paying to clean them up they won't be as cute. " - This was a comment I received on my Instagram a few months back. This account pretty much just goes round commenting mean things on peoples accounts who promote Down Syndrome. And also.... I was unaware that when Adaline turns 60 she will loose all control of her bowels. *eye roll*
* Some other comments that you might not know are incorrect to say*
Babies who have Down Syndrome are not "Downs" babies. Maybe its just me because I am her mother, but the term "downs" seems to have such a negative meaning behind it. Which is why I like to use UpSyndrome. There really is nothing Down about Adaline.
(Hannah) is the mom who has the Down Syndrome baby, Adaline. I really really want to make sure Adaline knows her diagnosis is not all that she is. She is Adaline who just so happens to have Down Syndrome. It shouldn't be the first thing people see about her. We don't describe each other as "the white" person, or "brown person". I really hope people can learn to view Down Syndrome as such a genetic trait. Just like she has blue eyes or auburn hair. We don't lead an introduction with physical traits.
She looks so Downs. Again with the word downs. And of course, she has down syndrome, sometimes she will do things that hight light those certain traits. Theres not a reason to point it out. Maybe its just a thing that bothers me, and not other mamas, but my whole hope for her life is that her diagnosis is not her identity. I feel like it shouldn't even need to be a talking point. But thats just me.
If you got to the bottom of this, you're a trooper. I know all my blogs are so long when it comes to talking about Up Syndrome. I just don't know how to shorten them and get my point across with out over explaining things. I never want you guys to leave my blog feeling offended. If you've ever said any of these things to me, I'm not upset. I just want to educate and explain how sometimes what we say comes off the wrong way. I too have said things that were hurtful or "wrong" before I was in this situation. And the reality is, not everyone is going to have a child who has Down Syndrome. Heck some of you may have never even met a person with a "disability". So my hopes are that we can all learn and grow together so that when we are faced withs something we don't know much about, we are careful and slow to speak.
Alright, thats it for now.
Much Love <3
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