Today was one of those days where I just sat in awe as I watched Noah play, grow, and develop. It’s so much fun watching him bang on blocks, sit up, laugh, and tries his hardest to crawl. He’s soooooooo close. Any day this little boy will be on the move….I can’t wait!
I love every second of being this little boy’s dad!
1 Parenting Lesson I’ll Never Forget
He may look like a tough football player, but he's really a teddy bear!
I’ll never forget a conversation I had with a friend, classmate, and former offensive tackle for the Denver Bronco’s just a few months before Noah was born. This friend of mine was doing a fantastic job of raising his two children, and as a new parent whenever a seasoned pro offers to give me parenting advice, I listen.
We discussed many different aspects of parenting that day, but there was one sentence my buddy told me that I don’t think I’ll ever be able to forget:
“Whatever preconceived ideas you have about what your child will be like, I promise you, he will be totally different.”
Boy was my friend right.
That sentence was one of the first things that came to my mind when we found out that our son was born with Down syndrome. I’m glad he took the time to offer that piece of parenting advice to me, because that sentence gave (and still gives) me a lot of comfort. And it’s a great reminder to all of us parents (and soon to be parents) out there….parenting will never be 100%, totally, just like you expect it to be. Never.
We wouldn't change a single chromosome on this little boy. 🙂
And that’s ok.
When It Comes To Parenting, You Just Have To Dive In…Well Sort Of.
Noah's working on his break dancing moves!
Of course neither my friend nor I knew that Noah would be born with 3 copies of his 21st Chromosome when we had that talk. He was simply making the point that parenting is nothing like we expect it to be before we have children. Down syndrome, or no Down syndrome. There’s no class, no weekend retreat, no seminar, no conference, no nothing that someone can go to in order to help them win at parenting.
They just have to dive in, and trust God. Or maybe that should be; trust God, and dive in.*
* I add an asterisk here to say that diving in to parenting doesn’t mean you shouldn’t prepare, and be responsible.. All of the above resources I mentioned above all all good tools, although none of them are the end all solution. Further, a child needs a stable environment. They need a mom and a dad. Trust me, I understand that sometimes in life things don’t always work out the way we intend for them to. Sometimes men don’t step up to the role they are called to fill. Sometimes women don’t. Sometimes people don’t take responsibility for creating a life. And that’s tragic. I could write much about this, but I digress….
Just please know when I say you have to dive-in to parenting there’s a huge asterisk attached.
Different Isn’t Difficult, It’s Just Different. And That’s Ok.
He'll be crawling any day!
People (including me when Noah was born) often assume that raising a child with Down syndrome is more difficult than raising a typical child. I remind them that parenting in general is difficult. Parenting a child with Down syndrome doesn’t make it more difficultt per se, it just makes it different.
And although it’s different, it’s sooooooo worth it. In fact, different can often be a blessing.
I’m sure some people will disagree with me. And that’s ok. Noah is our first (and as of today, only) child, and so different is all we know. Different is our normal. And we are ok with it. Very ok with it.
What’s one area of parenting that turned out to be totally different from what you thought it would be like before you had your first child?
About Rick Smith
My favorite Parenting Quote is: “Don’t be a barrier to your child”….
That’s a great one!
Do ou have any children? If so how old?
Why is it that we try and try to get them to sit up and talk etc etc and then we spend the teenage years telling them to sit down and shut up hahahahahahha
Not in this house…we’ll be talking as long as we can…! 🙂
My son, Alex, continues to teach me so much more than I teach him. He’s remarkable. He also has trisomy 21 and every day I thank God that Alex was made especially for us. Someone once told me, “Being a parent isn’t difficult; anyone can do it. Being a good parent is difficult.” So true.
@23c8a4a5904c421e1adae8dad50b079e:disqus So true. It’s sort of like when people say “God only gives special kids, to special people.” I tell them, no…He ‘gives” kids to people when they have sex. 🙂 Sometimes people have children that shouldn’t. 🙂 I mean that in the nicest possible way of course.
I think what you said is so correct. Being a parent is easy…it’s being a good parent that is challenging.
How old are your children?
I love reading your blog. I am a 22 year old mother to a 2 year old baby boy with Down Syndrome. He is my first as well! Jacob adores his dad. He will turn all the way around trying to following him and keep him in sight. He just laughs and smiles all the time! Jacob has definitely taught me that he is his own person and that I am here to help him to become the man God intended him to be. I am grateful that I had Jacob first. Having Jacob has helped me to realize that parents can not live their life through their children. I use to have all these plans on what my children would do; softball, ballet, dance, baseball, football, etc. Now I realize that as long as my child has a happy fulfilling life thats what is important. If Jacob wants to play baseball then I will support him 100%! If he doesn’t, I will support him 100%! Keep blogging you are truly wonderful and inspiring.
What a lovely post Laurenne – Jacob is a lucky little guy to have such a clever and wise Mummy – perhaps you should start your own blog too? Hint Hint!!
I 2nd that…!
I’d be glad to help you get started. Just let me know how I can help. 🙂
I have often thot to start a blog for my 45 yr old brother.
Other than time, is it hard to get started?
@a42853e8e431382d3e0f868b60076cfc:disqus Nope. It’s very easy actually. But it does take time. 🙂
I’d be happy to help you if you decide to get something going. And by the way..you should. Your story has power. Did you read this post —> http://noahsdad.com/power/
When I heard from friends and colleagues that they let their children climb into bed with them in the middle of the night I thought, I will NEVER allow this. My husband and I work all day and need our sleep too. When our little ones started to do it, it didn’t seem so bad. I looked it up on the internet and some of the “experts” said they do this because they crave closeness because you are apart all day long. Awwwe and we loved to cuddle them back. But now they are 8 and 10 years old and still doing it. The same “experts” say not to worry, they won’t do it when they are 14 years old. Gosh I hope not, our bed is not big enough right now as it seems 🙂
@457e52f1ebb3e375bedbd966ff6b6acc:disqus ha,ha. I know just where you are coming from. You’ll have to ask my wife @noahsmomMD about my thoughts on that… 🙂 She has to pray Noah out of my hands some night…I just love cuddling with him so much. 🙂
After my son (with Ds and WPW) had heart surgery he recovered in my room… a couple nghts turned into weeks… I felt guilty that I wasn’t a “better” parent until we went to see the cardiologist who did an echo of my son’s hardworking heart and then did another echo while I hugged my son. His heart wasn’t working as hard when I held him. I was his pace heart and his place of rest… couldn’t think of a “better” thing I could do as a parent. Trust your heart too.
love the jammies he is doing so good hes gonna be walking soon then dad you will be on the run all the time . go noahhhhhhh hugs lil man
Thanks…! We are a little behind on our videos (as you may have noticed from the date on the site, but I’ll give you a spoiler alert….he is crawling all around!) 🙂
I totally agree – my kids were going to cure cancer, bring about world peace, solve world hunger and win Olympic gold medals in every event known to man – but I forgot that each has their own life path / personality / goals and that we as parents don’t write the script – “Somebody” else does!
Who knows, they still might. It’s the “how” that you and I get to watch unfold. How awesome. 🙂
Good
morning (2/28/12): Does anyone know of a support group focusing on (middle-aged)
siblings who are the sole caregiver of their adult brothers/sisters
w/Down syndrome? I feel very isolated and abandoned, not to mention
broke, worn out, and worried about the future. Hope all you young
parents will be thinking far ahead. I have an idea about building
cohousing communities to solve the problem of what happens
when our DS loved ones grow up, especially if their parents haven’t
made a plan and/or when only one sibling (as in my case) cares (and is
struggling, not just financially, but in attempting to deal w/my brother
who is in decline; don’t worry, that won’t happen to every DSer).
Thanks a million in advance of any info you can impart. (P.S. We are in
NJ now)
hi you should check with social services/ Here in Oklahoma we call it DHS they may know of a group. Talk to the special needs teachers in your area they might be able to give you some help. At the very least maybe they can hook you up with the parents of someone from thier class room that might be some kind of support. hope this is helpful. take care and prayers for you and yours
My nephew doesn’t have DS but is high functioning special. I am his legal guardian. Each state has some type of Department of Human Services. It may take many calls to finally get to the right place. Also, contact a local Special Olympics. This organization is full of parents/families that are a wealth of knowledge. I have a long term plan in place for my “WesBuck”. There are attorneys that specialize in setting up paperwork for after you are gone. Remember it’s a life of baby steps. Prayers for you : )
I’m not sure how actively they help folks to create support networks but I think these folks are pretty much best practice in terms of figuring things out and might be helpful http://www.neighbours-inc.com/newjersey/nj.html I’m not in the states, but in our area talking to some of the best agencies can go a long ways towards learning what might be out there and what’s working for other people in your situation.
Hi I too am the guardian of my brother who is 45. We have had help thru the DHS program here in Texas
Hope you find a program/support group there in NJ.
Thanks for being there for your brother! Best to you n him
Blessings
Bea
I went to the Nation Down Syndrome Congress’s Annual Convention with my parents and older sister(with DS) last summer and they had quite a bit of info for siblings as the sole caregivers. I haven’t looked much into the resources they provided as I am currently in college and have not yet taken on the main caregiving role. One of the resources a lot of people really recommended though is called the Sibling Leadership Network…it does not focus exclusively Down Syndrome but still has a lot of really good information! Also it’s probably worth looking at the National Down Syndrome Congress’s website as I’m sure they have a lot of valuable resources too. hope this was helpful and sending positive thoughts your way!
First of all let me say I understand some of what you are feeling. I have a 20 year old son, Jesse with DS and it has taken my husband, Jesse’s two brothers and me to care for him over the years. I am fortunate that income is not an issue at least for now but looking ahead I worry about what will become of him when we are old or no longer alive. He can never be left alone and that will never change. Jesse does not speak or sign and has no understanding of danger. We do get some respite relief and that is a life saver to us. He is in a program now that watches him after school for us. It costs but it is not terrible. Look for help anywhere you can, go through Department of Human Services, Social Security Dept etc. There should be someone who can at least give you a break. I hope you get some relief. We have a decent program in TN where many of our adults live in group homes. They generally seem to like it and the families are still active in their lives. You are good to care for him. I am trying to arrange it so that my sons do not have to take responsibility for Jesse on a daily basis should he outlive my husband and me. They love him and will make sure he is in a good place but I could never ask them to physically care for him everyday. It is exhausting and is more difficult as he gets older. We do not have an extended family so it is really worrisome.
in your state, contact the area agency on aging, it is part of a service, with info what is available in your area, next contact a agency in your area for DS, and than most hospitals offer, support groups so you might check with your local hospital to see if they have a group, than in the newspaper usually support groups post, on Sundays you should be able to go online for the newspaper in your town and read the back issues for listings, than also one person wanted a support group for something else as they lived in a very small town and I managed to find a support group on line for him and family on that Google; DS support group for adult siblings….hope that helps you…Cj
I have an idea about building
cohousing communities to solve the problem of what happens
when our DS loved ones grow up,……when you contact area agency on aging ask for the info on….independent living, assisted living, boarding homes….the boarding home is a sort of mini assisted living they are state inspected, and cannot have over 10 residents and are usually in a ranch style home sitting, and the care taker lives in the home with them, and than they usually have a few more workers…so ask them about that…..it is cool actually ….a friend has one of the mini homes…it is a new built home, they each have their own room…so bigger house….everything just like a home, they all go out on outings as a family etc….
I too am caretaker for my brother, who is now 43 yrs. old. It is a huge responsibility. When I retired, I moved in with him and my Mom.
I quickly discovered that being a full time caretaker puts a lot of weight on your shoulders and can bring a lot of strain…emotionally, financially, and physically. I made one phone call to the Dept. of Human Resources here in Texas and received lots of help and information. Here’s the main # in New Jersey.
http://www.state.nj.us/humanservices/staff/hotlines/index.html
Please call them and let them help. Your commitment to your brother is amazing, but you can’t do it alone. Also, be sure to ask if New Jersey has a plan that actually pays full time caretakers. It may not be much, but it will help. Tx. does not have this program, but many states do. You can also go to medicare.gov and enter your brother’s social security #. You will immediately see what services are available for him. It’s so easy now, you simply enter his SSN. No more waiting on the phone forever.
I hope you find help and encouragement soon.
Thank you to everyone who left comments. I really appreciate you guys stepping in and filling in a gap I don’t know much about. This is an incredible community here. We are blessed to be on this journey with you all.
@856341c265078754d161a6838d4ebdce:disqus Please keep us posted and let us know any way we can come around and help support and help you.
Are there any specific things we could be praying about for you? Also would you mind sharing where you are located? Perhaps there are some others that read our site that live near by and could offer their friendship.
Your posts are great and I am so glad that God specifically chose you and your wife to parent this amazing boy, Noah! My youngest (of 4) Elizabeth, has DS. She has taught me from the moment of her birth that there are no professional parents only devoted companions committed to making the journey with her. Whenever you think you know what you are doing that seems to be the time when you need to learn something new. Thanks for the inspiration:)
@facebook-1350157543:disqus Thank you so very much for your kind words. I really appreciate it. And you are right, there is no such thing as “professional parents.”
By the way, you should post a picture of your family here in the comments, and on our facebook page. We all love seeing pictures of everyone’s families. 🙂
When we discovered my infertility, we adopted two boys from
foster care. They don’t look like I imagined my kids would when I was growing up-I’m white and their African American. They have some issues they would not have had if born into a stable home. But as you said, all parenting is work, and we have been incedibly blessed with our boys.
Wow. It sounds like you guys have an amazing story! I’d love to hear more. 🙂
Do you guys have a blog?
There’s nothing fun about going with the herd! I think standing out and changing history, for even 1 person, makes life what it should be.
True that! 🙂
he’s such a cutie, I was watching one of your videosa couple of days ago and Josh saw what i was watching and waved to him. Thought it was cute, when he starts walking you will be on your feet non stop, that little man will keep you on your toes
@3dae5921093d2358a750a5dab2bc5e34:disqus awwww. that is very cute indeed! thanks for sharing that with us. I can’t wait to be posting a video of Noah walking…that will be an epic day indeed. :0
How old is Josh by the way? And is he your only child?
I would argue the point that parienting a special needs child isn’t more difficult. I am mom to a 16 year old who is typical and twins with developmental delays who are 14. I can guarentee you I have never had to fight with doctors, insurance, school districts, etc. for my typical child. I don’t mean to be a discourager, but as time goes by resourses tend to dry up unless you have a lot of money to pay for them. Insurance companies tend to expect the schools to provide things like speech therapy, OT, etc. and schools are strapped for these things. Also people assume that once your child is out of the preschool or early elementary age that you don’t need support. Don’t get me wrong, I love my girls and I will fight for them. But it is harder.
Also there is the difficulty of the unexpected. Normal transitions are anything but normal. I have girls and something as normal as puberty brings issues I didn’t have with my typical child. How do I insure that they are safe sexually, because they don’t understand they could more easily be victims. Then there is a somewhat silly one- shaving, how do I teach children who don’t have good motor controle to shave their legs? Are there difficulties in raising a typical child, oh yeah. But there is a heck of a lot more people out there who’ve already been through it, there is a system to help you guide them through the pitfalls of parenting, and you’ve already experienced growing up yourself so you sort of know what to expect.
Thanks for your comment, I certainly understand what you are saying. (And no worries, no discouragement was taken.) 🙂
However, I think you sort of proved the point I was trying to make. Each child is unique, and each will comes with their own individual parenting challenges. You talked a lot about the challenges of your 14 year old with developmental delays, but you didn’t mention any of the concerns that come along with raising a 16 year old girl. I’ve worked with teenagers for almost a decade, and I know that 16 years come bundled with all sorts of great parenting adventures. 🙂
I think the issue is people often laser focus on the needs of a child with special needs, which in turn makes it seem as if they are more of a challenge to rise than the non- special needs child. As I mentioned in the post, I wouldn’t say that helping your 14 year old daughter with the concerns you mentioned is going to be harder than the things you will go through with your non-special needs daughter. Just different.
I’m sure you could write a long list about some of the challenges of raising your 16 year old that haven’t came up with your 14 year old as well.
But in the end parenting in general is a challenge…but what a wonderful challenge it is. 🙂
O.K. First of I never said that It wasn’t a wonderful challenge. But to pretent that parenting a special needs child is just like parenting a typical is just wrong. My twins will also face the pressures and challenges my 16 has and does, drugs, alcohol, dating, bullying, etc. About the only thing they probably won’t face is the pressure to be academic all stars. So couple that with the challenges of developmental delays and then you get the idea of what life with an older special needs child is. As much as you want to be positive, you also need to be realistic. Parenting any child is not for the faint of heart, even more so when you add special needs. I’m not saying it’s all doom and gloom, but it’s not sunshine and roses either.
You make the point that people always laser focus on the needs of special needs kids. I have also experienced the fact that special needs parents are suppose to be happy and positive all the time. After all special needs kids are all adorable little angels. Yes I have heard that exact statement. So I stand by my point that it is harder to parent my twins with disability than it is to parent my typical child teenage adventures and all.
@4ad7425dddcfad79d1bafea85909eeef:disqus I left a response above as well. I’m not sure if you saw this post (http://noahsdad.com/down-syndrome-angels/) but I certainly don’t believe children with Down syndrome are ‘angels.”
Also about parents of special needs children being positive all the time, I don’t think the way a family acts or their outlook on life has anything to do with the challenges of their children. I think that is based on something much deeper than that.
We are Christians, and have 100% trust in God’s plan. He has been in the business of running the world for a really long time, and He’s really great at it. We trust His plan for our life, and the life of our children. Are we positive all the time? I wish. But we are growing all the time. Learning all the time. And seeing life through the lens of truth more and more. And the more we see life through that lens, the better this life becomes. And so yes, we view life as wonderful. We do try to be happy and positive as much as we can. But our real joy doesn’t come from anything this world has to offer, it comes from the deep joy of knowing Christ, and living in that truth every day. 🙂
I have 2 children with learning disabilities, our daughter with Down’s syndrome will be 11 withing the next 2 weeks. We get a mixture of toddler strops with pre puberty strops along with the extreme stubborness that seems to coincide with alot of children/adults with DS. Our son 17yrs old has complex and severe learning disabilities and most nights has seizures overnight. They are both very challenging in very different ways…although out daughter is a lot more able than our son she can sometimes be more difficult. This is because of our sons diffiucutlies he doesn’t argue, call you names or throw impossible strops, but on the other hand it takes at least 2 people to change him(he’s still in nappies) as he kicks out, hits, and pulls hair. He’s very difficult to go round shops with, but it’s easier with our daughter so long as she doesn’t do the sitting down strop refusing to move! lol It is VERY challenging and SOME bits are harder than having neuro typical children. Like parents of most 17 yr olds can go for an evening withouth worrying about a babysitter….but even finding a sitter now is a challenge. When he leaves school he will need a day centre or somewhere to go and watching him ALL day is exhausting….with most young adults who are out of work and least you can leave them at home watching the telly or even better helping around the house where as if my son was at home i’d have to take him with me and struggle with the shopping with him pulling things off shelves etc.
However I look the problems some of my friends have with neurotypical kids…..and as parents they are sitting up late worrying where they are, some have got into the wrong crowd, some have got into drugs and one has even been in prison for armed robbery. Now some of those i would find REALLY difficult
@ce39755247692b044415f56f11fb057d:disqus sounds like you get what I’m trying to say! 🙂 Thanks for your comment.
It sounds like you guys are doing a great job. I’d love to see a picture of your family. You should post on in the comments, and on our facebook page. 🙂
I agree, it is more challenging to raise a child with developmental delays than a “typical” child. Having one of each and being a sibling to a developmentally delayed brother I am aware how much more time and patience will be exerted to reach and maintain future goals. But do not be discouraged, there will also be many rewards along the way….some small…some big. And remember nothing in life is a guarantee or easy for anyone.
I never said I was discouraged, just realistic. Pie in the sky, life is wonderful isn’t real. The reality is my 14 year olds will face the same issues my 16 has and does only they will do it with special needs in a world that isn’t always supportive.
I know that life is a guarentee and that is precisely why we need to have a REALISTIC view, not some POLYANNA view of these struggles.
@4ad7425dddcfad79d1bafea85909eeef:disqus I’m totally agree that ‘pie in the sky” isn’t realistic. (I would however disagree with you saying that life being wonderful isn’t….I’ll assure you, life is very, very wonderful indeed.)
If anything I’m painting the picture that parenting is hard. Very, very hard.
Also I do not think your 14 year old daughter will face all the exact same issues that your 16 year old will face. They will each face different (and challenges) things in their life. And will need support from their family and friends to walk through them with them. It’s not easy, and certainly not “Polyanna”…. (I’m actually not sure who Polyanna is….was she a mom??) 🙂
It sounds like you are doing a great job though raising your children, keep it up!
Don’t limit your children or yourselves! Every goal is achievable with preseverance.
I agree 100@ with this! 🙂
Believe it! 🙂
@c7f3cd974aa5ff68d206fc1240d27480:disqus Totally! 🙂
Our family also has a Noah with Down Syndrome and his Dad has a blog too http://carpe-weekend.blogspot.com/ We enjoy your Noah and ours!!!
Thanks so much for sharing this link! I can’t wait to check it out.
How old is your little Noah? And how did you find our site? (We always enjoy hearing how people found us!) 🙂 And we are so glad you did!
Our Noah is 20 months old. He was born w/ duodenal atresia (repaired) but no heart problems. We are really having fun with this guy! We found you via a Facebook link on DS Assn of Memphis about your now world famous Target post!
@8d6db6b68dea55318c6a076cb8e50301:disqus Glad to hear everything is going well! you should post a picture of him (you can post one here, and in the comments of the blog post!)
We’d love to see him. 🙂
There is nothing greater than having a child to call your own. Are there really “typical” children in the world anymore? I wouldn’t doubt that everyone would agree with what your friend said. Yes, our children has Down syndrome but you are right…it is the best thing in the world. There is nothing more rewarding than being a parent! Now all I see is that you’ll have to teach Noah to be a Offensive Tackle and return the favor to his friend! Go NOAH!
@a710cdd3108a5e80ab419b45313709d2:disqus Well said! I have no idea what a ‘typical’ person is. The thing we all have in common, is that we are all a little different. 🙂
And who knows..maybe Enzo and Noah will play on the same team some day. 🙂
Parenting James really isn’t any different than my other 3. I stayed home with them as well and actively played with them. Sure, I incorporate the work from therapies into play, but everyday stuff is the same. What has been different is all the medical appointments! I have yo admit it is more the same than I thought it would be!
@a97124d2f047b31aed9ea466570475ae:disqus I totally agree. 🙂 I must admit, I had no idea what to expect when Noah was born….
If I only knew then, what I know now. 🙂
I was so excited when we went to your blog and saw Noah in a Denver Broncos bib!! Our little guy Treyton is almost 3 and lives in his Tim Tebow jersey. Praise God for how he is using Tim Tebow!! Anyway, we need to get a group together and go to a Bronco game!! My husband has a blog he is just starting called Treyton’s Posse. Love what you are doing for the world of DS. We have been so amazed how “typical” our little guy is. He is even reading!! What a blessing and Go Broncos
@c7467b1704cd81330312423b822f8248:disqus That’s awesome, thanks for your comment! I’m actually good friends with Matt Lepsis (the guy in the picture.) He has a Super Bowl ring from when the Broncos won! SUPER great guy. The bib (and some other Bronco gear is from Matt and his family.)
And yes, I agree we should all go to a game some time. 🙂 My wife’s family is from Colordo, so we go there pretty often. (Is that where you guys are from?)
I do think the fact that your Noah is still a wee one (where support and resources are widely available) clouds your judgement, just a tiny, tiny bit. Resources and support were so easy to find and utilize when my older (almost 13yo, autistic) son was a toddler/preschooler. The older he gets, the schools are less able to care for him (his current school is a diamond in the rough, a true rare gem of a placement!), and the community support is just not there for teenagers, young adults and adults. Sure, there are the far and few between resources but if your child doesn’t mesh with them, then you are quite literally, out of luck because there isn’t a wide variety of programs for the older kids/young adults, etc.
Thanks for your comment. But the same is true for any teenager. Having Down syndrome presents different challenges, not necessary more difficult challenges.
I have worked with teenagers and there families for over a decade now, and the one thing that all families have in common is that all parenting is difficult. Is raising a child with any sort of “special needs” challenging? Sure. Is raising any kid challenging? Absolutely.
Each will have unique needs that have to be solved.
Hello! We thank God for what you have! And we found your web site! We very love of Noah! It very useful for us! Thank you!
Our baby is already 15 months old and he do not still creeps and do not get up on all fours…
Can you have for us any tips?