Fact: I had some pretty good statistics typed out for this and then had to do other things and now it’s all gone. So today’s fact , you’ll get tomorrow because I’m salty. But, #dadtricks got me a smiley pic of Ryan!! 😍
Fact: Down syndrome can be hard, but we love Ryan for exactly who he is! .
Remember when I got the prenatal diagnosis and then had to go to MFM every week, sometimes twice a week til Ryan got here and I HATED all the stupid ultrasound pictures they gave me because well I was so over it all and they always said like - toes, hands, ear, nose...😒 Here are just a few of the collection of pictures I have. I still saved them because even though I hated it and it was hard, even after the diagnosis, we were still excited to meet the guy. We were still in love with him. .
I’ve been working on this for like two days! I made him a shirt for World Down Syndrome Day! And working on one for his sisters too! It’s frustrating learning the machine, but I’m getting it. Lol. I’m so proud of this shirt though. Lol. 💙💛💙💛
We got our socks delivered today!!! 😬 One step closer to #WDSD! Ryan’s socks are totally appropriate! Especially with today’s (hot poopy) mess! Sneak peek of the rest of our socks if you swipe left! Thank you @johnscrazysocks !!! 💙💛
Fact of the day, we’re going into detail about low muscle tone - no fancy pic to go with because we are currently waiting for our car. So, let’s talk about low muscle tone not to be confused with low muscle strength! Our kiddos have low muscle tone, but believe me, that should not be mistaken for strength! Let me tell you, even I said - what low muscle tone? because he’s a strong little guy. Low muscle tone means that there is not enough tension in the muscle when it is resting. The low tone causes a slow reaction to a stimulus and can’t contract for as long as a typically developing child. Kids with low muscle tone have a hard time maintaining posture without support - so the sitting up milestone is HUGE for our kids! Muscle tone is controlled by the brain unconsciously and is not something that can be changed. HOWEVER, strengthening the muscles, actively contracting the muscles, can compensate for low muscle tone. So, when we do therapy, we are strengthening Ryan’s muscles to make up for his low muscle tone. He is going to be a strong guy. No doubt about it.
Started our day with a LONG POINTLESS genetics appointment. 😒 Don’t even get me started. BUT, we came home to a mailbox full of goodies!! We got our sweet gift from @alilsomethingextra321 (this super cute shirt!) It’s so cute I think it warms my heart to “UP syndrome”. I’m neurotic and like things to be called what they are. Yes, I’m coo coo. But this is such a cute shirt, I couldn’t even wait to put it on Ryan! P.S. GIVEAWAY going on RIGHT NOW on their page! Go enter! 🙌🏼
We also got our information resources to give to families and healthcare providers about @dsdn! Eyan was even blessing them! 🤣 Y’all, if you have a kid with Down syndrome and don’t know about the Down Syndrome Diagnosis Network, get to know them! This has been a staple network in our journey. There are groups for ALL! Moms and dads. We literally laugh and cry together - it’s insanely crazy how you can be so connected to people all over the world and it’s not just a “connection” - there is a connection! Lol. I love this network so much! 💙💛
First of all, there are NO WORDS for the amount of overwhelmingly loving support Ryan gets! It fills my heart. I am so so so thankful for each and every one of you all that support and follow Ryan! Y’all just don’t know! Ryan is set up for success with just that alone! BUT that’s not all! Our state has a program called First Steps which is a program for kiddos with disabilities, not just Down syndrome, that prepares our guys and gals for preschool! Our developmental interventionist (DI) will give Ryan a little therapy and if she ever feels like he needs more, then his team will grow! This DI is specifically from the @downsyndromeoflouisville - so she specializes in kiddos with Down syndrome! 👌🏼 How awesome is that! We love our DI, I even asked if she could come and talk when he’s healing from surgery - they are required to take a 6 week break. 🙁 And finally, Ryan has the upmost stimulating environment and family at home - he might turn it nutty like the rest of us! 🤭🤣
Just got this sweet gift from @alilsomethingextra321 today!! With a sweet note included! This is just in time for our next couple of Weeks and surgery soon! Starbucks is my fuel! And that cup is venti! 😂 Thank you so much!!
Did you see that? “ALL” people with Down syndrome experience cognitive delays. That’s a hard pill to swallow. No parent wants that for their kid. However, the key word isn’t all, it’s delays. Delays just mean it could take a little longer for our kiddos to get there - not to be confused with unable.
P.S. Keeping up with these daily facts is some work! As you can see, the later and later daily posts! Maybe I’ll do better tomorrow, but we’re starting our day off with an appointment! These next couple of weeks are super busy! 😕 💙💛
I only have 45 minutes left in the day! This guy is FOUR MONTHS today! He is getting ready for his big surgery, just a few weeks away!! 😧 He is excelling at tummy time, rolling from tummy to back, and back to tummy assisted. He loves to clasp his hands together and put them in his mouth. He is a pretty happy fella. He sucks on the phantom bottle when he’s hungry and will cry when he is hangry! He’s almost got the reaching and grasping down. I think just a week or two and he’ll have it. He did an amazing smile the other day, and does them still but always too fast for me!! 😑 And he will talk your head off! He has the stinkiest gas. 😵 And he has been awake a lot more, so keeping me busy! His peak time is 6:30 AM right now, Week need to change that! I’m over it. We’re so proud of our guy and his smiles are the best! 💙💛
People with Down syndrome can do ANYTHING you can do! I often hear rants about moms of babies/kids with Down syndrome being told unsolicited stories about how the storyteller knows that a person with Down syndrome works at the local supermarket and that said person with Down syndrome is super sweet. What’s the rant about? I’m often a little confused because the person is working and friendly, etc. I guess it’s because the storyteller might be putting a limit on the person with Down syndromes abilities? I’ve never asked, so I don’t know. I feel like it’s taboo to ask what the fuss is about. 🤷🏻♀️ Truth is, what would society be without our people with disabilities, not only Down syndrome, working these positions? Truth is, people like me and you are too good and prideful to accept a minimum wage position. The way I see it is these guys are so proud to work and be included and accomplish a goal, it’s not the end for them. Just like it’s not the end for me or you. World Down Syndrome Day is March 21 and the cool kid thing to do is wear crazy socks! Who is participating?? Raise your hand! I’ve got our socks ordered from @johnscrazysocks, you should too!
It’s times like this when I’m okay with being a fluff. 🤷🏻♀️
It’s so crazy that when I was born the life expectancy for people with Down syndrome was only 25 years! I love how far times have come! Expected a whole nother lifetime and more! 🙌🏼 Swipe to see how we think Ryan will look at 60 years old! 🤣
All jokes aside. DO YOU ALL KNOW HOW INSANELY JEALOUS I AM THAT RYAN IS SMILING IN THIS PICTURE AND DAD GOT TO BE THE ONE TO GET IT ON CAM FIRST?!????? This is so freakin cute. 💙💛😘
There are a few common characteristics that people with Down syndrome have (see picture). I think this is why people with Down syndrome prefer the people first language. Because the characteristics are sometimes obvious and seeing that person as Down syndrome before the person can be judgmental. The characteristics do not define the person; every person is different. Every person has their own journey. Every person will have their ow personality. (Also, NOT ALWAYS happy!) I think one of the things on the list of what NOT to say to a mom of a child with Down syndrome is that the child “doesn’t look like it”. That doesn’t matter. It doesn’t make anyone feel better. It’s an observation...most babies you probably won’t even be able to tell the characteristics. If someone says that like it’s a good thing, it can be hurtful because, what if the child did look like it? They wouldn’t be cute anymore? Ryan is the cutest baby on the planet, even when it shows. I’m in a huge group of moms with babies with Down syndrome and EVERY SINGLE one of these babies are cuties and they all look different!! So, while we have some same characteristics, it does not mean everyone is the same. What I do appreciate is when we are at an appointment and the doctors let me tell them that he has Down syndrome, and they don’t say he doesn’t look like it - they say they suspected it but weren’t sure. But I understand when people mention it or something related, it’s all in good spirits.
One characteristic is upward slanting almond shaped eyes, Ryan has that...but he’s also got some Asian in him. The characteristic that I notice most, that others probably don’t, is the low muscle tone in his shoulders and arms.
Let’s not look at people with Down syndrome and automatically think Down syndrome or happy. Happy is the biggest myth. Ryan is the hungriest male I know.
However, we are blessed to have Ryan. Because a person with Down syndrome can really change your life. And he can’t even talk. He can barely smile! But I know when he wants to. Lol. I think that got off topic, but 🤷🏻♀️. The fact is the important part. The rest is opinion. Lol. Also, Ryan thinking about sleeping. Typical.
Just another sleeping pic of Ryan. 🤷🏻♀️💙
So there is a campaign called R-word! Fact is, today is “Spread The Word to End The Word” day. The r-word is the word “retard(ed)”. This word is exclusive, offensive, and derogatory. The campaign asks people to pledge to stop saying the r-word as a starting point to creating more accepting attitudes and communities for all people.
I don’t care for the word; however, I made my pledge to stop the use of the word. Why? Because it’s almost always used to describe something dumb or something a person doesn’t like. That’s offensive to our community. And if this could ever one day offend Ryan and I have to witness it - I’d be pretty heartbroken. My hope is that he will never know the word or have to hear it. The goal for his life is INclusion, not exclusion. Have you pledged to end the word?? Make your pledge at www.r-word.org ! 💙💛
Also, pic of his face because I love it. ☺️
Forgot to add this to the fact! This was when we got home today! The one and only pic to took today. 😕 He was not himself for a little while tonight - crying, screaming. I almost cried with him. Now he is sleeping peacefully and I don’t want to wake him to feed him! I’m torn!