I wanted to reach out and touch someone.....sort of.
If you’ve been watching our daily one minute videos about our son who was born with Down syndrome you may have thought to yourself:
“Do these people do anything other than take their son to physical and occupational therapy appointments!?”
If so, I don’t blame you. We post a lot of videos of Noah’s various physical therapy, occupational therapy, and even a few of his speech / feeding therapy sessions. Our daily one minute videos only show one minute of our day; there are 1,339 more minutes of our day that you don’t get to see. We typically post a video every day and if Noah happened to go to one of his therapy appointments on the day of that video, that’s usually what we show on that day’s video. Make sense? But to answer your question, yes, we do have a life outside of therapy….I promise. 🙂
We ‘hang out’ at physical therapy a lot!
One of the reasons we started this website was to give the world an inside look at what life was like for parents raising a child born with that extra 21 chromosome. (For those of you that have no idea what I just said, children with Down syndrome are born with a 3rd copy of their 21st chromosome, as opposed to 2.)
Initially there were two groups of people I really wanted to reach with this website.
So many parents who receive a prenatal diagnosis of Down syndrome are led to believe that their life is going to be sad, or exceptionally difficult if they choose to bring their child with Down syndrome to full term. (Parenting is difficult in general. Having a child with Down syndrome doesn’t necessarily make it more difficult, per se.)
Many of these parents spend countless hours online researching information about down syndrome pregnancy, down syndrome cures, down syndrome causes, down syndrome resources, and all the rest. They are scared. Nervous. Anxious. Confused. But most of all they are hungry to know what it means to have a child with Down syndrome. Hungry to find out what their life will be like if they choose to bring their child to full term? Hungry to find out how different their life will be as a result of their new baby…who just happens to have Down syndrome. In other words; they are hungry to learn what a down syndrome diagnosis means.
My hope was (and still is) that as those moms and dads are desperately searching the internet for information, they would come across this website and see Noah. See our videos. See a sneak peek into the life of one family raising one child with Down syndrome. And that they would see that our story isn’t a sad one. In fact, it’s quite the opposite. (Then I hope they visit our Facebook page and meet thousands of incredible parents doing an awesome job raising a child with Down syndrome!)
The second group of people are those parents who (like me) were surprised to learn that their child was born with Down syndrome. When Noah was born I remember spending countless hours in our cold hospital room with my trusty MacBook Air trying to find some videos about Down syndrome. I remember going to YouTube, typing in ‘Down syndrome videos’ or “videos about Down syndrome” (I don’t recommend doing this by the way) and hoping to find 20 bazillion encouraging videos about Down syndrome.
Boy was I wrong.
Sure, there were some. But there were also lots of not-so-encouraging ones. Comedians making hurtful jokes. Super-outdated videos. Super-sappy videos. Super-long videos (I don’t want to watch 10 minutes of anyone’s home video…Down syndrome, or no Down syndrome.) 🙂 Super-weird videos (If you ever worry that you and your family are weird, just spend a few minutes on YouTube. You’ll quickly find out that you are not nearly as weird as you think you are. Trust me.)
In other words it was hard for me to see the tree in light of the forest. The needle in the haystack. The polar bear in the snow storm. Waldo on the beach…Waldo on a ski slope….Waldo at a sports stadium…Waldo at the…..I think you get the idea.
Sure, there were lots of great blogs about Down syndrome, but I’m a visual person. I wanted to watch (not read). I wanted videos. I wanted a window into the life of a family raising a child with Down syndrome.
I wanted to reach out and touch someone…..sort of.
To make a long story short, a few months after bringing Noah home from the hospital I came across a video that encouraged me greatly. After watching that one short video I wanted more. A lot more. But once again I had a difficult time finding them. However, watching that one video reminded me of something very important; the power of story.
So I decided to tell ours.
I decided I would create for others what I had a hard time finding for myself. Videos. Lots and lots of videos. In fact I would do a video every day (or at least try to.) I would create an online narrative of our son’s life. I would tell his story by posting a daily one minute video of what life is like for a family raising a child born with Down syndrome.
My hope was (and still is) to reach the two groups of people mentioned above; parents receiving a prenatal diagnosis of Down syndrome, and parents surprised by a Down syndrome diagnosis after birth. To show them that life goes on. That the rush of emotions fades. That stereotypes are whack. (To new parents: sorry to disappoint you, but despite what you’re about to hear pretty much every day of your life; people with Down syndrome aren’t angels.) That our story isn’t a sad one, it’s a beautiful one. In other words I want to show them the power of our story.
Because it’s part of our story…..and he gets to ride a elephant sometimes, why not! 🙂
Sometimes he even gets to eat his shoes at physical therapy!
But on a serious note, when we first started on this journey I had no idea what Noah’s therapy visits were going to be like. Were they going to mega hard for him? Could I come? Was it going to make him cry? Was it going to make me cry? (I can seriously cry like a little girl at any given moment, I promise.) Was it going to be boring (to him, or me!) Was was he going to do during his visits? I was clueless. I would have liked to have known what to expect. Sure, I could have read a number of the fantastic blogs that are out there, and that may work for most people, but I’m not like most people (really, I’m not) I wanted videos. As it turns out we receive a lot of emails from families who enjoy seeing some of the things Noah is doing in therapy with their own eyes. They find it helpful. (Which is good, because it’s a lot of work.) 🙂
In addition to that we receive emails from people all over the world (literally, all over the world) asking me to post more (and longer) videos of Noah’s therapy sessions. Many of these parents have no therapy resources where they live, and they actually use the videos to get ideas of things to do with their own children. (This of course comes with its own dangers since you should never try out anything you see on any of our videos without the explicit permission of your pediatrician and pediatric physical/occupational therapists. But still, that’s powerful.) Each and every one of these emails do 3 things for me:
Anyways, sorry for the long blog post today. I just wanted to take a second (or a half hour!) to shed some light on why we post so many videos. I hope what you see (and read) here is encouraging….and shows you that the story isn’t as bad as some OBGYN’s would lead you to believe. In fact it’s not sad at all. It’s beautiful. I wouldn’t want to live in any other story. I really mean that. (And if need more proof there are over 12,000 families here that will tell you the same thing.)
To parents of children with Down syndrome: What are some of the things you searched for online when you first found out that your child had Down syndrome? What things were helpful? What things did you have a hard time finding? What things did you want to find, but couldn’t? And if you really want to be super awesome, I’d be interested in hearing what some of the exact phrases you typed into google were. Don’t worry we won’t judge. I promise. 🙂
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You forgot about the third group! Parents like me who do not have a child with DS, but know someone who does, and through them have been introduced to your site! Who knows which one of us may be the next one who gets the diagnosis while pregnant, or finds out like you did after birth, but either way, our opinion of what it means to raise a child with Down syndrome is NOTHING like the outdated ones we had before actually learning what it means to raise a child with Down syndrome. Just think how many parents will not be scared, because of you and other parents who are so open about raising a child with DS!
Thanks so much for leaving your comment, that REALLY means a lot! In fact that's why I said 'initially" when I was describing the two groups. But now there are several other groups I want to reach...one being parents like yourself.
We are so glad to have you on board. Please feel free to post pictures any time you want. Either on the Facebook wall, or the comments. We love seeing everyone's little ones.
Oh yah, feel free to ask any questions you have. We (and most all the parents on here) are very open about what life is like raising a child with Down syndrome, and don't mind sharing at all. :)
Love this!!my son jake will b 6 in August,I did get the tests while pregnant just because I thought I was supposed to and that's what I did when I was pregnant w my now 12 year old. I never dreamed that I would have positive results that my unborn child had Down syndrome .when I was told w 99%accuracy that my baby would b born w down s I found out the
same day that he was a boy,22 weeks along and I cried for a half hour while they discussed w me what they called options which for me were NOT options.I knew I wouldraisee him no matter how scared I was.the night i gave birth to him the doctor who delivered himcame to my room a few hours later and said" I just wanted to come in and shake the hand of one of the bravest women ive ever met .I want you to feel as honored to have him as I was to deliver him w you ,you will make a difference in this world,I wish there were more people I this world w strength like yours,we woukd all live inas better place"and then he thanked me.thats the begining if my journey w jaje and I cant wait to see more about noah,he is beautiful btw,thanks for your bravery too.you have a lovely family
I just wanted to tell you that I enjoy your post and I've been a rehab nurse for over 20 years (sos that makes me old) so I've seen alot of dedicated parents and alot that werent so I'm happy you guyus are there for Noah as from what I can see he is a smart kid with lots of potential. Keep up the good work. I don't blog alot but just wanted you to know you two are great parents.
Thanks so much for your kind words. I really appreciate them. How did you find out about our website? I'm glad to have you following our journey by the way. :)
Ha I was looking at my blog and realized I must have been real tired when I typed it. Lots of mistakes!!! How did I find your website something was posted about the target ad and thats how I found you. I have several of my therapist friends following also. One OT is an instructor at University of MO, Columbia and I got her to connect so her students can watch the progress Noah makes, see the challenges and hear a parents side of raising a special needs child. I have a nephew who is 5 now that has CP and I took him for a summer when he was 13 months old and only army crawled, hated taking baths, only ate certain textures like oatmeal or pudding. after 3 months of constant work he no longer W sat, he went from army crawl, to crawling , to pulling up, to walking with rear walker, to independent walking. We got him AFO's and I made him use his left side so that he would have a good helper hand. I also taught the basics of sign language so he could communicate, he just really started talking alot in the past 18 months as I got him started in the early education program at the public schools here in MO. Ok enough rambling. good night
Amy Power ha,ha..I never view anyone's comments as 'rambling' .. I love getting to learn about our readers / friends. :) Thanks for sharing.
I LOVE all of your posts, videos, and photos! Thank you so much for sharing! You are touching so many lives in such a positive way.....people that you do not even know and will probably never even meet! How many people can say that about themselves? I was wondering though...have you posted any feeding therapy sessions on here? I have searched your site, but can't seem to find any. Any suggestions? I work as a speech therapist and I thoroughly enjoy watching Noah's daily progress! Thanks...so please....keep them coming!
Thanks so much! It's so cool to have a speech therapist following our journey! :) Noah is about to start seeing a private speech therapist here in Dallas that's supposed to be really good, so we are excited. However we do a have a few posts that you maybe interested in seeing. One is his barium sallow study ( http://noahsdad.com/swallow-study/) and if you go to the search box (on the top right) and type in "z-vibe" "beckman" "spoon" "eating from a spoon" you will find some other really ones. I'd be interested in hearing what you think of them. I also have some great videos of him with the speech / feeding therapist that I took before we started the blog. I'll have to find those, and post them for you also.
Anything that shares the joy of Down syndrome with others is Fantastic - off course! We love Down syndrome.
Thanks Mike! We appreciate all that you do!
Well, I didn't look anything up on the internet, my family did! (just where I was at the time) Reuben would have been 9 months or so and I was laying in bed at 2am and couldn't sleep, so I googled "down syndrome" and there was "NoahsDad.com" so I read the birth story of Abbie and Rick's and for the first time in 9 months or so I didn't feel alone! Abbie and Rick! Thank you guys so much! I love reading your blog and catching up with people on you facebook page! You two have both both blessed me in so many ways and I'm so proud to call you my friends! oxoxoxoxox
Awwwww..thanks Libby. Your family has blessed as us well. It's been so great getting to know you guys (and we LOVE your family!) :) Thanks for sharing how you found us, I really enjoying hearing these sorts of stories. It's like the fuel that keeps me banging out these videos and long blog posts. :)
first off I love your blogs short or long n I love the pictures n videos you do. they not only help the parents out there with ds children but they also help the parents of the children who aren't ds kids. it lets everyone know what goes on in the life of a ds child and the family. maybe the blogs n videos will help some one who was given the news that their child has ds and it will help others to understand that ds kids are just like their child they just have to try a little harder to do some things. you n your wife are blessed to have a sweet loving lil man and to share him with the world is great and to want to help others only shows what kind of parents noah has god gave you noah for a reason n I think that reason was to help others get thru their days n life with a ds child and know that they are not alone. thank you for sharing your family with us and please keep up the great job you do. noah is a very lucky little boy and you n your wife are very lucky as well god bless you all.
Thank you so much for your kind words, and encourgment. I really appreciate them!
I just love watching Noah's therapy sessions. It gives me ideas to do at home. Oliver has PT twice a week and OT once a week, but they come into our home. Which is fabulous, but I wish he had access to some of the equipment they use with Noah. Like the treadmill and harness. But we are lucky to have the services we do have. It was hard at first because Oliver cried during it, so I cried, his big sister cried and told them to stop hurting her brother, it was tough. But now he smiles and waves and talks to them. They become part of the family. Since having Oliver our family definately became larger, we now have a pediatrician, cardiologist, thereapist, and many nurses in our extended family. Keep the video's coming, we learn so much from them. But most importantly we know we are not alone!
@Beth: My son cries every time he goes to PT with one certain therapist (he works with two in the week). As a matter of fact, he DIDN'T cry for the first time on Tuesday, and you can better believe I took video! Turns out my little man likes techno music, and that therapist has techno music on his phone. Who would've guessed?? I agree with you about his "team" becoming a part of the family!
Lydia Norvell How old is your little guy? Oliver is 20 mths and it was about 4 mths ago he finally stopped crying for all of them. It was one in particular he cried for. It was actually kind of funny, she wouldn't even talk or anything and he knew she was here and he would look at her and cry. now they are friends. Oliver had his 2nd heart surgery over Christmas, so he couldn't do therapy for awhile, so I was worried we would start over with the crying when it started back up, but he didn't. He was a champ. That is great about music, Oliver likes any music, his little feet just go and go.
Beth Sheehan James is 17 months...so there's hope! I'm happy to hear that someone else's child didn't just love it, and that he outgrew it! I'm hoping James will, too. Thanks for the encouragement.
Lydia Norvell He will, keep me posted. I would love to hear how it goes!
So much was going through my head reading this post. But the one line that just stopped me dead in my tracks was this one.
"Many of these people have no therapy resources where they live"
It makes me insane to think that people cannot get the simple , (and PT for our children when they are little is simple), help they need. The simple exercises that will strengthen their muscles, the simple ways to adjust your hands to help them , help themselves to climb, or sit up or pull to standing.
it's not right! it's not fair!
Stephanie,
I agree. That's what I was thinking also. It breaks my heart that there are so many people who don't have access to even some very basic therapy. I've actually been brain storming / talking with people about some ways to help some of these people.
You wouldn't believe the number of people who write in that have the same story. It keeps me up at night.
I looked up Down Syndrome on You Tube and yes I found ridiculous stuff and a few touching videos. When I searched on regular search engines I found a group on babycenter and I found your blog. I remember saving it under my favorites because it looked awesome and full of information. I worked with teenage kids with Ds, but I had no idea what to expect with a baby. I was mostly looking for info on how to help James and what to expect with development.
Wow, thanks Amy. I really appreciate the kind words. What sorts of things did you type into Google when you are searching? This also helps me to think about what sort of resources I should work on to help other parents. I was hanging out with some other parents this weekend, and asked them the same question. It seems several people searched for "down syndrome cure" and "is there a cure for down syndrome." I found that interesting.
Like Libby Holmes, I didn't do any searching. Someone sent me a link to Kelle Hampton's blog, and I kinda stuck with that. But I was really wishing she would put more information on her blog. I would try to decipher her photos and words to figure out what Nella was achieving and how. Then a friend in the DFW area heard your story about the Target post, and she sent it on to me. It contained exactly the answers I was looking for.
We have a blog for our kids, and I know what kind of work you're putting into this! I'm trying to do better about videos I put up--taking your cue and including "child with Down syndrome" in the description, and tagging with "Down syndrome" so the videos are more readily available to people who are looking. There are several people here who keep blogs. Maybe one day you could give us a post on the simple things we could do to make our blogs/videos more search engine friendly.
That sounds like a GREAT idea Lydia! I have a background in social media and technology, and was a tech nerd long before Noah was born. :) So this is sort of the thing I 'do." :) But yes, I actually have written down on my long list of things to do, to create a series on how to use your blog to advocate and inform others about Down syndrome (or other topics.) There are people who write in just wanting to learn how to even set up a blog, all the way to more technical questions like you asked about how to help your site be found by people who are searching. So yes, I think this would be a great series to write. Thanks for suggesting it...an thanks for all the kind and encouring words you always leave for us. It's been great getting to know you and your family. :) I"m glad your friend turned you on to our site. :)
By the way, it's been about a week since I started the Facebook comments. What do you think? Do you like them? Is it easy? Pros? Cons?
NoahsDad.com : I'm not sure about the FB comments, yet. I like that it connects to your page on FB, but it seems that the posts people put directly on FB aren't making it over here? So the conversation is still disjointed. And then there's the second comment section at the bottom of the page using Disqus, so I have to remember to scroll down there and read those comments, as well. I don't think I get notifications of any comments this post gets (where I used to get e-mails because I subscribed to the post). Hm...in looking, I see that I could still subscribe at the bottom of the page. I wonder if I would just get the Disqus comments in that subscription, or the FB posts as well. I'll have to try it. So...all in all, it's fine, I'm just not sure it solves the problem of connecting the two sites to create one conversation. Maybe I'm missing something?
I'm sure you have a very large list of things you'd like to accomplish! I'd like to say I was a tech-nerd, being a Mac person, a designer and photographer, and hey, a Gen-Xer, but I'm not. Otherwise I'd offer to do that post for you. I do know how to start a blog. :) Anyway, I'm sure you've thought of it, but it might be a good time to start having some guest bloggers! You keep up with the Noah's Minute and other things close to your heart, and let others tackle some things that you want done, but may not want to spend the time doing. This is a large community; surely there are many varied talents here! I'd be happy to help any way I can.
Lydia Norvell I agree. I'm trying to figure it out the pros / cons also. I like how the other comments notify you by email. I like how these comments make it easy for Facebook friends to log in. I don't like how it doesn't bring in the other comments like I thought it does. I don't like having 2 sets of comments. However, I do like how people can choose to comment to their wall, and continue to the conversation there...which in turn lets other people chime in...
decisions, decisions.... :)
Lydia Norvell By the way, have you tried to 'follow post' yet...? I'm curious what that does.
Lydia Norvell actually I just followed this one. :) Time to see what it's all about.