Down Syndrome: A New Parent Guide

June 23, 2011 — 13 Comments
This Down Syndrome New Parent Guide is a great resource!

Packed Full Of Helpful Information, Facts, And Resources!

If you’re a new parent of a child diagnosed with Down syndrome (including prenatally) you probably have a lot of questions. Before we get to those, let me first offer you a huge congratulations! I hope you’ve taken time to rejoice in your new addition.

If you are anything like I was when our son was born you are probably going “google crazy” trying to find some information to help you understand what Down syndrome is all about. You probably have a list of questions that’s growing every day. Questions like: possible medical concerns, blood tests, labs, acronyms, speech, eating, things you should ask your pediatrician, schools, day care, and a host of other things.

First of all take a deep breath….you can do this! (And we want to help you.)

2 Problems New Parents Face When Trying To Find Information About Down Syndrome Online

  1. It’s easy to become overwhelmed with the sheer amount of information available for online.
  2. There is no way to verify the accuracy of most of the information that is available online.

How This New Parent Guide Solves Those Problems

social media logos new parent down syndrome information guide

Please step away from the keyboard.....you've found what you've been looking for!

I understand how frustrating the above two issues  can be which is why my wife and I are excited to make available the New Parent’s Guide To Down Syndrome.  he goal of this new parent guide is solve the two issues I mentioned above, here’s how:

  1. All of the information is one place, easy to access and forward to friends,and family (who will also be interested in learning about your new adventure.)
  2. The information in this guide has been written by a Medical Doctor (pediatrician), my wife who is currently doing a great job of raising our son who was diagnosed with Down Syndrome.  (I don’t know of any other “Doctor Mom” who is writing and sharing resources like this for free online.  If you do, please be sure to let us know!)

The New Parent’s Guide To Down Syndrome will be done as a series on this site.  Below you will find a list of the topics, and the order they will be posted.  This list will grow as new topics are added.  Please be sure to contact us if there is a topic you think would be helpful to include in this new parent guide.  We hope you will share this on Facebook, send it to your friends, and most of al we hope you find it useful.  We value your feedback, so please be sure to leave a comment below to let us know what you liked about this new parent guide, what you didn’t like, and how we can make it better!

We are honored to be on this exciting journey with you, and look forward to helping and encouraging you any way we can!

New Parent’s Guide To Down Syndrome

  1. Did I Cause My Child To Be Born With Down Syndrome?
  2. What Is Down Syndrome?
  3. Top Four Medical Concerns For A Baby Born With Down Syndrome.
  4. Important Medical Labs Your Baby Born With Down Syndrome Will Have In The Hospital, And What They Mean
  5. Five Physical Characteristics Of Children Born With Down Syndrome
  6. Top Resources For New And Expecting Parents Of A Child Born With Down Syndrome
  7. Down Syndrome And Development: An Introduction
  8. Three Challenges I Faced As A New Mommy Of A Child Born With Down Syndrome During The Frist Month.
  9. How To Choose The Best Pediatrician For Your Child Born With Down Syndrome.
  10. My Baby Was Born With Down Syndrome : Helpful Ways To Tell Your Friends
  11. Four Areas You Will Need To Have Organized, And How To do It.
  12. A Free Downloadable Checklist For Your First Few Weeks Of Caring For A Baby Born With Down Syndrome

Be sure to visit our connection page so you can stay connected to all of the exciting things we are doing!

We are very excited about making this New Parent’s guide to Down Syndrome available, and hope you are to!

In Resources
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Rick Smith

Noah's Dad is creating an online story about his son who was born with Down syndrome. The story is being told by daily one minute videos, and we invite you to be a part of the story. Please take a second to sign up to receive our daily one minute videos directly in your email.
  • Kirsten Noble

    Hi Rick,

    I am so thrilled that your wife is putting together this guide for new parents. What a gift you’re giving such a special group of parents. Noah is getting so strong and he is really progressing like the champ he is. This is going to be an invaluable resource to parents, family and friends of new borns who have Down Syndrome. I really am in awe of how God is giving you all a crown of beauty instead of ashes, the oil of joy instead of mourning, and a garment of praise instead of a spirit of despair.

    I love my daily dose of Noah – it’s exciting to see him rock your world each and every day. And with the time difference between you and me in Australia, my daily dose of cuteness is in my inbox every morning when I get up! It’s a great way to start my day.

    All my love to the family
    Kirsten

    • admin

      Thank you so much!

  • Leah

    Your little boy is AMAZING!!! Beautiful blog of a beautiful life :)

    • admin

      Thanks so much! We agree! :)

  • http://blog.gretchenmather.com Gretchen

    Hi again. I love the new parent’s guide to Down syndrome! There is so much information out there it is hard to keep it straight.

    • admin

      Thanks! Our goal is to publish at least one new article in that series per week. My wife has really done a fantastic job writing them.

      Feel free to pass the information along, or link to on your blog. We would appreciate it.

  • Brenda Ray

    Hi I just read your blog as I was searching for a ‘feeding chair’ for my son Luke born w/DS. We live in Madison, Wi. We were blessed Dec.12th,2009 with the birth of our son we found out at birth as well. Have you heard of Welcome to Holland written by Emily Perl Kingsley? that was great for us in reading… Noah is adorable and I love your blog I look forward to reading more but duty calls my toddler is acting like a 2 yr old YAY!! he is only 21months… have you heard of Changing Minds ? just curious what your thoughts are & also Dr. Costa’s NY Times article…. e-mail me any time brenda.jean.ray@gmail.com. I serve on the Board for our Madison Area Down Syndrome Society. You could google that so you know I am for real. Blessings! Brenda J Ray

    • http://noahsdad.com/ Noah’s Dad

      Brenda,

      Thanks so much for your comment. My wife (a pediatrician) and I have read some of the information by Dr. Costa. It sounds like he is working on helping children born with Down syndrome reach their full potential…and we’re all for that. Where we draw the line is when people try to play “god.” Trying to “cure illnesses” that aren’t really illnesses….if that makes sense.

      I have not read Welcome to Holland. If I had a dollar for every copy of that book I’ve either been given, suggested, or sent the poem, I’d be a rich man. :)

      To be honest some of the best advice we received when Noah was born was to skip all of those sappy books on just work on helping Noah become who God created him to be..and that’s what we’ve been doing every since.

      We bought all of the developmental books on this link http://noahsdad.com/top-resources/ and got after it.

      I did read the first little bit of Roadmap to Holland, but the main characters story is so much different then our story, so that changes everything. I don’t think that is a good book for new and expecting parents. The lady in the book had so much to deal with, and it can be a little overwhelming for new parents to consume. Especially since every family is unique, and one’s families story will be different than another’s.

      We aren’t the type of family to sit around and read sappy stories….so from 3 weeks old we’ve been in therapies. Working (and playing) hard. This is the internet, so please excuse me if my comment seems to come off a little sharp, or rude. That’s not my intent. :)

      I just like to encourage parents to spend less time reading books about other families, and instead start thinking about how to move their family forward; helping their children to become all they were created to be.

      It’s a fun ride. I’m glad you were able to connect with us. We look forward to learning more about your story as well. By the way, be sure to “like” us here as well —–> http://facebook.com/noahsdadcom/

      There’s lots of really great families on there. Feel free to post a picture there as well..we’d love to see your little Luke! :)

      • Brenda Ray

        Hi I should have clarified what that read was about!! just a short poem. Not a sappy book. I agree I do not have time for sappy books exactly why I do not read them either(& why I am not on facebook) my spouse and I took charge and I agree with your outlook and not trying ‘to cure’. We just hope to give Luke the very best & to increase his independence we can tell how proud he feels when he is learning something new or doing it by himself!
        I am not on facebook unfortunately. We found that it took up too much time and I use G-mail w/Picasa Web albums. We do a lot of our groundwork and think outside the box a lot. I like to do research on many things. Such as we needed to thicken our son’s fluids due to he is a silent aspirator see you-tube video by my husband Jesse: http://www.youtube.com/watch?v=lqhkOiHJgKg
        When I read your blog I was touched because it was all the feelings we had as new parents but just never blogged about it. I find your website very informative & inspiring to new parents. I am working to increase awareness within our community in Madison as a board member & first & foremost a parent! I want to help other families out in difficult times within our country. We need to bridge together more than ever. =) Grace be to God and we are abundantly blessed with our Luker Duker I can not wait to show you pictures!
        I will be sure to check out all of your references that you have found. This is why our families born into a blessing of DS can help each other out. I have met some amazing people I never would have had the great fortune to meet. Luke has the ability to light up any room despite the darkness in society at times.
        Take good care ..Blessings to you,Noah,and of course MOM MD you must be so proud =)
        Here is the Poem:( I would take Holland over Italy any day! )
        WELCOME TO HOLLAND
        by
        Emily Perl Kingsley.

        c1987 by Emily Perl Kingsley. All rights reserved

        I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

        When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

        After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

        “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

        But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

        The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

        So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

        It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

        But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

        And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

        But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

  • Shugie

    This is so sorely needed. We were (are still to some extent) Google crazy after the diagnosis. We have one of our routine appointments with our developmental pediatrician at the Down syndrome clinic at the University of Virginia (Kluge Children’s Rehabilitation Center) and I will be sharing this with the doc & staff & all the other parents in the waiting room!

  • http://mdbeau.blogspot.com/ Michelle

    It’s great that your wife is putting these articles together. You said to let you know if there are any other ‘Doctor Mom’s’ who are writing and sharing resources like this for free. So I’m letting you know about Dr Len Leshin :) Not a Mom, but a Dad. He is also a pediatrician and has an 18 year old son who has Down syndrome. He has a written several articles related to medical issues and Down syndrome with numerous articles from guest professionals as well. He has a pretty comprehensive list of links on his website. Here is is: http://www.ds-health.com/

  • Pam Romano

    What a handsome baby!!!  I think this is a great site and a great idea!  My son was born with down syndrome which was a huge shock since I was 20 years old when I had him.  He was born with tetralogy of fallot and AV canal which is of course compatible with the downs, so I also became “doctor mom.”  My son is 4 now and is constantly surprising me by how smart and sweet he is.  He is absolutely my favorite person!  All the best to you both and that little cutie, Noah!  :)

    Pam Romano

  • linda

    Please continue with your valuable information in the New Parents’ Guide. We need 6-12 posts!!! Thanks for what you are doing.