We love every copy of his 21st chromosome!
One of my biggest fears when I first learned that Noah was born with Down syndrome was that I wouldn’t get to do all of the fun things dads got to do with their sons. Did children with Down syndrome still like to play? Did they like toys? Did they laugh, smile, and have fun? Would Noah want to play on my iPad one day? Would he even be able to use an iPad? I had no idea what to expect. As a dad, it was one of the scariest moments of my life.
(Spoiler alert: it was a very short moment!)
Our family dog (Gizmo) is a little (a lot!) jealous of Noah!
My only knowledge about what it was like for someone to live with Down syndrome came from Corky on Life Goes On, and Becky on Glee. Apart from that I was left with an imagination full of false assumptions about what it was going to be like raising a child with Down syndrome. I guess you could say I wondered if Noah having Down syndrome meant I was going to miss out on some of the best things about being a dad.
If you are a new parent reading this I’ll get straight to the point; boy was I ever wrong! This kid loves to play! In fact I have a hard time getting anything done because of how much fun this little boy is! His personality, his smile, his laugh, the way he likes to roll around on the floor to get my attention; it’s wonderful! I can’t get enough of him!
This kid loves to play...and I love it!
By the way I purposely used past tense verbs on the title of today’s post, everything I knew about Down syndrome I learned from watching tv, for a reason….because it’s past tense. I now have more experience with Down syndrome than what I learned by watching Glee and Life Goes On (I think those shows are helpful by the way in that they help the world get an inside look at the life of a teenager living with Down syndrome.) So as you read our blog and hear story after story about how great Noah makes our life, please know I speak from experience. Not only that, I’m also hoping to give the world an inside look at what life is like for a family raising a child born with Down syndrome. My hope is you’ll see our family is much more normal then un-normal. (By the way, I’m still trying to figure out what the world normal means as it relates to a family….I think every family has a little weird in them….and that’s ok!)
It’s been over a year since we brought Noah home from the hospital; I wish I could go back in time and tell myself not to stress out. Not to worry. That I wouldn’t miss out on anything. That I’d be able to do all the things that any dad would hope to do with their son! (Actually a little more considering how often we get to go to physical therapy!)
I wouldn’t change one little chromosome on this boy.
We love every copy of his 21st chromosome!
As you can in today’s video we’re in the process of moving into our new house, which means we have a lot of work to do. Tonight I had planned on getting my office unpacked while mom was at work….But Noah had other plans. I’m pretty sure he was thinking,
“Let’s play! Let’s play! Look at me roll! Look at me play with this box! Look at me play with the dog! Let’s play! Let’s play!”
And so we did.
To parents of children born with Down syndrome, what where were some of the misconceptions you had when you first started on this journey? To everyone else; what are some of your assumptions about people with Down syndrome? Don’t worry, you can be honest. I knew almost nothing about Down syndrome when Noah was born, and I’m thankful there were people in my life who were gracious enough to help me learn (and didn’t make me feel like a jerk when I said something inaccurate, and possibly even hurtful.) One this I hope this website does is help people become more aware about Down syndrome, and what life is like for families raising children with Down syndrome. Every child is unique, but hopefully between our daily one minute videos, the interaction from people in the comments, and hanging out on our Facebook page, we (and by we I mean the thousands of families who are on this same journey) can help the world do away with the inaccurate stereotypes, and move forward with a more clear and accurate picture of what raising a child with Down syndrome is like.
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Hey Rick, My first thought, was VERY selfish! bottle top glasses, hearing aids and holding my hand for the rest of my life! This was all a saw when i went to the shops and saw people with DS! I was SOOOOOO wrong!! i love my little man so much and he has added the perfect ending to my family! xx
@Libby
I know what you mean. It's amazing how much I didn't know. I guess in a way it's a good thing, because it helps me to be understanding with others who don't know much about Down syndrome.
By the way, I like how you said Ruben was the "perfect ending to your family." So beautiful...and true! oh, and by the way...you never know...it may not be the ending yet! ;)
hahahah oh Rick...don't say that!!! it wouldn't take much to convince me!! :) xx
hahahaahh love it! Another little Holmes!
(Hey by the way, how did you know I had replied to your comment? Did you just happened to check the page again, or did you get an email?)
I'm trying to figure out some of the details about how this new comment system works. Do you like it better than the old one? (by the way when you post you can also share your comment on Facebook...and you can leave a picture / video in the comments. You should try that also. :)
Ill be honest. When I was younger, until I was maybe eleven, I thought people with DS were usually violent by nature, and I was actually a little scared of them. This was based on knowing just one girl in the first few years of my schooling who I now realise was probably never told that her rough play was just a bit too rough. My mind must've twisted that into thinking she did it deliberately.
Once I was a little older, and met more people with Down Syndrome, I found this not to be the case. I started seeing the true kind nature of "sufferers" (for lack of a better term).
For what it's worth, Becky is one of my favourite Glee characters. Her storylines always make me smile and cry in equal measures :)
@Tenielle,
It's interesting you viewed people with Down syndrome as being violent. I usually hear the opposite, that they are all very 'sweet,' 'angels,' etc. Thanks for sharing.
By the way, in regard to the term "suffering" ....people with Down syndrome aren't 'suffering' from anything. I'd encourage you to not sure that sort of language when referring about them. (No offense taken at all, I'm sure you didn't mean anything by it.) I'm also sure I said a lot of things (and probably still) do that weren't the 'best.'
I would just say "I started to learn more about what people with Down syndrome are like." One thing I've learned after Noah was born, is that Down syndrome isn't a bad word. It's ok to say. And parents don't mind people saying "hey, I'd like to learn more about Down syndrome, would you mind sharing a little bit about it with me?"
For some reason I used to think I shouldn't bring it up or something...or that I may offend the person I was talking to. Now I'm learning how much it's ok to talk about it.
Thanks for leaving your comment, and I want you to know you can ask all the questions you want about Down syndrome here. The community around this website is great. They really enjoy helping people learn (especially since we are learning ourself.)
By the way, feel free to join our Facebook page. It's another great place to ask questions, and learn more about Down syndrome (http://facebook.com/noahsdadcom/)
It is so interesting that you bring up that you used to think you shouldn't bring up Down syndrome, and I think that is true about A LOT of people, in many different situations. It's like talking to anyone who has an obvious physical marking of some kind, I'll just use a very bad burn for the sake of an example. In a completely well-meaning attempt to make the person feel at ease, I end up looking ANYWHERE but directly at the burn, even if it ends up being more obvious and awkward than just addressing it in some way.
I think many of us are worried in those situations that whoever it is (be it a parent or child) just wants to be treated exactly the same as anyone else, and so we DON'T bring it up.
It is silly, since it's not as if the parents don't know their child has Down syndrome, but I also think it is probably a very human reaction!
Very true. It's just a reminder of how we make things into bigger deals than they really are. :)
Hello Rick Smith:
My daughter with Down Syndrome is 14 now. For me, life changed dramatically, but Not because of my daughter, but because of all the prejudice I've encountered. All friends and family DISAPPEARED OUT OF MY LIFE after my daughter was born. I have NO more friends, and my ONLY Family is my daughter with Down's Syndrome. Life has been a constant challenge for almost fifthteen years now.
I didn't mean anything by it at all, you're absolutely right :) I was tired when I wrote my first comment, and "people with Down Syndrome" seemed too long for me to type by the time I got to it, that's all :) Just me being lazy haha
Yeah, anyway, up until whatever age it was that I learnt better, that first girl was the only person with Down Syndrome I ever met, and she was only in my life for a year or two when I was fairly young. I wish now that I'd known she wasn't *trying* to hurt me, we might have become friends...
ha,ha..no worries. I get lazy also, so I know just what you mean! :)
One great thing about the internet is how much it helps people to learn about people / things / places they may have not have known much about prior. I hope this site, and all the great people who comment, and share on Facebook does just that; helps people learn more about Down syndrome.
By the way,I'm using a new comment system, so hopefully you wouldn't' mind answering a few quick questions; 1. how easy was it for you to leave a comment, and 2. how did you know I had replied? Did you get an email, or did you come back to the page to check?
I remember having a hard time saying disabled. My husband has a disability as well as my twins and it's just one piece of who they are, not the whole picture. So that word is fine, just like you would say my daughters are female or they are 14, those are just part of who they are not definitions. I think in our quest to be sensitive and politically correct we can go overboard and make words more powerful than they really are.
@4ad7425dddcfad79d1bafea85909eeef:disqus I totally agree! It's like the whole issue with people first language. I'm an advocate of it, and often (lovingly) correct my friends when they don't use it. However I know they don't really mean anything buy it.
I will say I have become much more sensitive after Noah was born to the things I say. I hope no one gets mad at me for being hones and sharing this, but my wife and I both used to say the word "retarded' to each other We meant nothing mean at all by it, it was just something we said. It wasn't until Noah was born that I learned how much this word can hurt other people.
I stil have so much to learn. :)
I know exactly what you are saying Rick. I spend a lot of time now reminding people gently not to use the r word. It's people I work with. I know they don't really mean anything bad by it, but I didn't realize just how much that word was used until Monte was born. I also had someone refer to him as a Mongoloid. I hadn't heard that word for years. My first reaction was to slap him to tell you the truth, once again, I realized he just didn't know any better. He didn't realize how painful it was for me to hear that. I'm so glad you have this website. People really need to be educated so they realize people with Down Syndrome are more alike than they realize. Monte plays ball and does things all the other kids do. He may do it a little slower, but he gets there. And I agree, he isn't suffering from anything. You've done a great job on the website. Thank you
About person first language, I'd just like to mention that not all disabled people find it respectful. I'm autistic, and if you call me a person with autism, I'll correct you. Autism isn't something I have, it's a part of who I am. You wouldn't call me a 'person with female gender', but I feel autism matters more to my identity than my gender does. I also find that often people who use person first language see only the person or the disability, when I want them to see both.
When we found out Dax had Ds the day after he was born, I was most concerned about how the diagnosis would affect his older sisters. I felt like I had disappointed them in some way- not giving them the perfect little brother we were all anticipating. We explained the basics to them about what Ds is & the likelihood that he would need more time to learn things,live with assistance,etc & they were unfazed. They immediately each asked if Dax could live with them when he was older. In that moment I really knew it was all going to be OK. My oldest is now considering becoming a physical therapist after working with Dax and his therapists.
@Shugie,
Wow, that's awesome! Thanks for sharing that. It sounds like you have some amazing daughters. How old are they if you don't mind me asking?
I really like the name Dax by the way! He sounds like a cool guy. Have you posted a picture of him on our Facebook group? We'd love to see him...and your entire family!
Also, do you have a Gravatar? If not, you should grab one. It makes commenting so much more fun since we can "see you." :) http://en.gravatar.com/
I did get way luckier than I deserve in the husband & kid department :) Amira is 12 (& a certified Red Cross babysitter experienced with adorable baby boys with Ds...if you're ever in Virginia & need a sitter) & I have 10 yr old twins -Zoë & Kayla. Throw in an adoring Daddy & all I can say is that it is good to be Dax :)
Wow...it sounds that way!
It also sounds like you guys have a house full of fun! I love it!
p.s. you should grab a Gravatar. :) http://en.gravatar.com/
One of the greatest blessings I have seen is how the siblings respond to the special needs child. My oldest wants to be a special ed teacher when she finishes high school. Yes the sibs need support sometimes, but often they become such compassionate people and open to others much more than other kids their age.
That's great! I really enjoy hearing that. You may have already shared this, but how old are your children?
I have a couple of friends from high school who both have kids with DS. They are high functioning, pretty normal little kids. But when I was told after my amnio, that yes, my baby had DS, I immediately pictured this person that would do nothing more than sit and drool and drain our finances with medical bills. Pretty selfish right? I still will get a gut wrenching pang of shame and guilt when I think about how I felt back then. I was of course so very wrong and I am so proud of my little Alaska, I love showing her off! She has brought my world and our family so much happiness! Just so in love with her! I pray that there is a way to get to new parents before they feel so negatively and decide to terminate. This blog is a great start!!!! Im so glad it has become so popular!
@Lori,
Thanks for sharing that story with us. I know what you mean. I remember wondering if Noah would be a 'vegetable." It didn't make me love him any less, or think anything negative about him. I loved him no mater what. I was being selfish. I was sad about what I thought I was going to 'miss out on.' Sad about what I thought the both of us was going to miss. Sad that Noah wouldn't grow up like and experience all the things a boy should experience. And sad that I wouldn't get to experience all of the things a dad should experience. Boy, was I wrong.
So glad you, and I, both learned how wrong we were. I hope you know there's no reason for you to feel guilty. From talking with so many people, it sounds like those feelings are normal. Thankfully they pass very quick.
I also hope people who are searching for information about raising a child with Down syndrome is going to be like come across our site. It's one of the main reasons we started the site. We wanted to show people that Down syndrome was ok.
In fact the other day I wrote post called 25,000 reasons not to be worried about the results of a Down syndrome blood screening test. I really hope that people who have just received a Down syndrome diagnosis come across that post. That smile tells a much different story than what so many first think. :) (http://noahsdad.com/not-worry-down-syndrome-screening-test/)
@cd38f258090b5d51b38db4f9e8f660b8:disqus I almost feel embarrassed for how I felt...but remember, we didn't know. And the best part is...you decided to learn! Learning is powerful and we all know now just how great a person with Down syndrome can be. Just google online and you'll find graduates, professionals, wonderful people who are doing everything they can to live the best life they can! I have big dreams for my Enzo, big dreams just like every other parent out there.
Hi Noah's Dad
To answer your questions....Like to play? Like toys? Laugh, smile, have fun? Play on you IPad? Use any IPad? Thats a big YES ! and you will probably be buying him his own IPad not to long from now.... Warren has used an IPad for a couple of years .... and has his own now. He will be 7 in July.... and he is a joy...
GreatGrandma.... Gigi...
@Gigi,
That's awesome! What are some of Warren's favorite iPad apps???
I didn't have a whole lot of thoughts about it, I don't guess. A very good friend of ours had adopted a baby with Ds when I was in high school. I remember her being like any other baby, only when she got sick, she got really sick. She is 13 now.
Even when James was born, it didn't bother me. I had actually thought that I would have a child with special needs someday (just preparation from the Lord, I'm sure), so it didn't shock me. I mentioned before that I did mourn the loss of a daughter-in-law, grandkids, an empty nest someday...these things happen to some people, so maybe they'll happen for James as well. Who knows. I tend to do best when I don't think about the things that could happen or might not happen. Enjoy my boy as he is today, and let the future take care of itself!
@Lydia,
I agree. It seems like I remember Someone once saying to not worry about tomorrow, and to take life one day at a time. Trusting in God each day. ;)
It's going to fun to watch all of our families / kids grow up together. Heck, who knows...maybe a few of us can start the worlds coolest Down syndrome gated community! :)
Before I had my daughter, Kara, (who is 16 months old) my only association with anyone with Down Syndrome was a 40 year old man in my church. I realize that the reason people have all these "stereotypical" ideas of DS is because that is really how it used to be. Down Syndrome for your Noah and my Kara is a completely different world than it was for this man's mother who is now in her 60's and her 40 year old son. They are the ones that people see in public, and what they see is scary to them. I have watched this man at our church and cried for the waste...for what his life could have been. This mother loved her son, but had no help, no therapy, no knowledge, (he was 2 before she found out that he wouldn't just outgrow it) no resources, and was advised to just put him away somewhere (which she didn't do). There was nothing for her to go on or know what to do to help him reach his potential. Of course, he was treated as if he didn't have any. Our children, and all the others are turning the tide. As they grow and show the world all that they can really be, hopefully Down Syndrome will not be something that is so terrifying and overwhelming, that people will be willing to murder their own babies, rather than face it.
I can't imagine destroying one of the greatest blessings that God ever gave me, because I was that afraid of it.
The problem, is of course, that our society doesn't understand the blessing of Down Syndrome.
I believe God has given each of us, not only the privilege of parenting one of His "special" gifts, but also of teaching the world of His "blessings".
@RayLene,
You are right about things be much different now than they were decades ago. And I also think this generation of kids, their parents, and all of the tools the internet provides (such as all the awesome families on our Facebook page), really will help the world see that people born with Down syndrome (and other disabilities / special needs) are capable of so much more then people ever thought.
Also I hope we can help people become more aware of people with Down syndrome so they aren't 'scared', or feel uncomfortable. I know before Noah was born I wouldn't have known exactly how to interact with someone with Down syndrome (I still don't 100%)...it's not that I was scared or anything. I just didn't want anything to be awkward, or uncomfortable. Now I know that it's ok to ask questions. Parents love helping people learn. That's one of the things i tell people now that want to learn more about Down syndrome.....just ask. If you meet a parent, just ask them to tell you about their life, what sorts of things they are working on in therapy, etc. I think the more we get people taking and learning about Down syndrome, the more comfortable they will become. And that's a good thing!
By the way, do you have a Gravatar? http://en.gravatar.com/
@da915c8ddb998319647ea9094657bed9:disqus
If there is one thing my husband said when Enzo was born...."Thank God it's 2011, not 1911!" You are right, this is the right time and people with Down syndrome are changing the world! God has blessed us all!
@a710cdd3108a5e80ab419b45313709d2:disqus So true! Things sure are different now than they were even a few decades ago. To quote someone who told me this when Noah was born; "There's never been a better time in the history of the world to be born with Down syndrome!'
I had never been around anyone with Ds in my life. I knew zero and my mind was full of wrong sterotypes. I saw a woman with Ds once that was short, very heavy, pants pulled up to her arm pits, terrible hair cut and her tongue hung out of her mouth. She was being lead around by her care giver. that image stuck in my head my entire life. When we got our prenatal DX it all came rushing back. It took tons of education and seeing with my own eyes the potential that people who have Ds have. The only limitations Journey will have will be the ones I put on her. Sky is the limit! I pray everyday the Lord will equip me to help Journey reach her destiny. I know it's gonna be awesome.
@Kristi,
I agree! The sky really is limit for our kids. It will be lots of fun watching everyone's children grow up.
I really like the name Journey by the way! How old is Journey, if you don't mind me asking?
By the way, do you have a Gravatar? http://en.gravatar.com/
@87ac9c3ae0c6d29b56876f5e999ee11a:disqus I bet you nowadays you see more people with Ds around you and realize just how blessed everyone is!
@a710cdd3108a5e80ab419b45313709d2:disqus I bet so! :)
Sometimes even the best laid plans don't always go the way we'd like them to. I found myself pregnant at the age of 40, and needed a Quad-Screen done. The markers for DS came up way elevated, but I chose not to have an amnio which could have confirmed the suspicions. I chose not to, I loved my baby, no matter what. She is now a feisty, normal 5 year old. I was willing to accept whatever I was given, and have loved her fiercely no matter what. Noah is such a cute, happy little guy who never fails to lift my spirits when I see his picture! You are a lucky man indeed.....
When Heidi was born, the paediatrician asked "Do you know anything about Down Syndrome?"?
Me: "Down Syndrome, of course!.....um....they all....look...the...same?" :(
I really thought I knew everything there was to know... I never saw anything like Glee or Life Goes On.
I'd read a book when I was young by a boy with DS and I saw a few kids with DS when I went to Kindergarten & High School... I could pick them out of a crowd and know they had Down Syndrome and they were usually a little difficult to understand so I tried to avoid having a conversation with them...but other than that, I knew nothing.
I was shocked when I was given a printout outlining all of the medical issues they can have, I never realised it had anything to do with chromosomes or low muscle tone or anything!
It's sad to look back and remember how I felt back then and how unbelievably ignorant I was...
I wouldn't change my daughter for the world now, and for some reason, I can no longer pick someone out of a crowd and say "they definitely have Down Syndrome"... Everyone is beautiful in their own way to me now, and I have Heidi to thank for opening my eyes to that (amongst the billions of other things) :)