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Are you the parent of a child born with Down syndrome and just want to say hello?

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Something we missed? It’s all good. Please fill out the contact form and we will respond as soon as posable. Although we do read every single message we receive; we unfortunately aren’t able to reply to each of them. We look forward to hearing from you.

 

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Comments

  1. Dear Noah’s Dad, 

    Thanks so much for sharing your and Abbie’s incredible story and love. Noah is a treasure! I am so thankful God has entrusted you with this beautiful child and given you the faith to believe he is extraordinary! And what a beautiful testimony to see your wife’s choice to smile as she greeted Noah for the first time. I LOVED that! Thank you, Abbie.

    I taught special ed for three years but am currently taking a break to be a mommy, but one of my sons’ teachers asked me for resources in discussing Down Syndrome with her class. Do you have any recommendations for short stories on a 1st grade level to introduce Down Syndrome?

    Thanks so much,

    michelle

  2. hello, 
    my name is emily, and i am 14 years old.  my uncle billy has down syndrome just like noah.  i love to spend time with him and all people with down syndrome.  i feel like we can learn so much from watching them learn.  at my school there is a special needs class. everyday i take time out of my study and go spend time with those kids.  i feel blessed that i am able to help these kids learn and be a part of their lives.  just recently, allie, one of the girls with down syndrome, saw me in the hallway and recognized me!  that made me feel so special.  i just wanted to let you know how inspiring you are to be raising noah in a wonderful way.  i will continue to watch your videos.
    god bless,
    emily

  3. Terrimontes says:

    I saw this story and it’s so motivational because so many people believe that children with Down Syndrome are retarded or severely handicapped and I believe that raising awareness will save more babies in utero and give parents resources on how best to help their special children. Thank you for sharing!

  4. Dadsroutine says:

    Hello Noah’s Dad,

    Have to say this site definately shows your labor of love for your son, such a cutie.  Like you said who cannot love that face.  I want to sincerely say thank you for sharing your amazing story with everyone.  It is a testimony to the strenght of parenting and parents like you that show that all children are loved and so lovable. 

    I am now certainly a follower now…as one dad to another…proud to say you are an amazing dad!

    All the Best!
    Joe
    Dadsroutine.com

  5. Susan (David's Mom) says:

    Hello Rick,     I wanted to let you know that I sent an e-mail to the contact listed on the brochure we all received this week letting her know that I found the term Birth Defects offensive.  I was so happy to receive a response today.  See below.  She’s asked for alternative terms they could use.  All I can think of is “Genetic Differences”, but I’m sure your readers would have some good ideas.Thank you so much for giving us all a voice!
    Susan(David’s mom)

    Dear Ms. Rogers,
    Thank you for your feedback on our publication, “Does your child have special needs?”. We always appreciate the thoughts of those who receive our publications as they bring important concerns to our attention. Although the term “birth defect” is widely used in the public health, medical, and research fields, I can understand that this term may be offensive to some people. Is there another term that you would find less offensive? We appreciate your feedback.
    Thank you,
    Katie Tengelsen, MPH
    Communications SpecialistBirth Defects Epidemiology and Surveillance Branch, MC 1964 Texas Department of State Health Services 1100 W. 49th St., Austin, TX 78756 Phone: (512) 776-2814
    Email: Katie.tengelsen@dshs.state.tx.us
     

  6. JoshuasDad says:

    Rick, I love your story and your web site. We have a Down syndrome blessing that was born September 18, 2009. His name is Joshua Riley. We live in Greenfield, Indiana. That just outside Indiandpolis. I was hoping I could have your permission to use some of your web pages for mine I’m putting together and some information. It won’t look nearly as nice as yours but it’s my first try. I will give you proper recognition. We have five kids. A 17 yo boy, 15 yo girl, 4 yo girl, Josh at 3 yo, and a 9 month old boy. Josh has truly become the center of our family after God of course. I hope you and I can become good friends. We just got out of the hospital for a five day stay with double pneumonia. He has a delicate respiratory system. I have lots of app advice and books that you will love. Keep in touch.

    Be God,
    Kenney Montgomery

    • My son has a very delicate respiratory system as well. Any advice or things to do to help with this issue. We have been in the hospital many times and just recently a few days ago he has pneumonia, but they are treating it with oral medication and this is the 2nd go around with pneumonia this month. My son is 20 months old and has had croup and strider so frequently during the winter months that the nurses at the hospital remember us. :(
      Thanks for your help,
      Heather

  7. Alex's Mom says:

    Hi there – I just liked your page on FB and posted about how people with DS seem to recognize each other and gravitate towards each other. Thought you might be interested in our story – The Ordinary Life of an Extraordinary Girl (on FB and  www.downsyndrometeenager.blogspot.com) – I have been blogging since August 2009 and relate all about Alex’s birth, early education and day to day life and the magic she brings in to our lives. Thanks for checking us out! I love learning about your little boy,,,you have a very fun life ahead of you!!

  8. Kimberly Rice says:

    Dear Noah’s Dad

    I have loved reading your blog so much. I know that you have a big following among families with children who have Down Syndrome. I was wondering if you could pass on this information for me to help get the information spread faster. I am from The Down Syndrome Partnership of Tarrant County, emailing you and your blog in regards to a special camp that will take place this summer from July 30 through August 3 called Lose the Training Wheels (LTTW). This camp will help people with disabilities ages 8 and up learn how to ride a bike without training wheels. It will be located at the University of Texas in Arlington.

    LTTW is on Monday-Friday with training on Sunday (a couple of hours) and lots of volunteers are needed to help teach participants how to ride a bike. 

    Terrific stories come out of it, too, such as a girl whose parents and teachers had been trying to teach her for 5 years; then, she goes to LTTW and learns in a week!  There’s another story about a young man and the greater independence LTTW provided for him.

    Here are some notes for volunteers:

    –Varied volunteer opportunities available:  spotters, photographer, planning committee, and administrative help during Lose the Training Wheels week.

    –Most volunteer spotters commit to the same 75-minute session each day Monday-Friday.  Bonding happens between bikers and volunteers and facilitates success.  Sessions will be 8:30am-9:45am, 10:05am-11:20am, 11:40am-12:55pm, 2:00pm-3:15pm, and 3:35pm-4:50pm, so someone who works full time but wants to help can do so if they have flexibility in their work schedule.  If someone would like to help, but cannot make it every day, we will need extra spotters Thursday and Friday.

    –Spotters will be walking and/or running with the bikers, so it’s very physical.  Recommended fitness level is to be able to jog at a moderate pace for one hour with short breaks.  Invite your friends to be on a volunteer team with you; you can give each other breaks!

    –We will be happy to provide documentation for community service hours. 

    If you have any questions or you want more information, I would love to come share photos, testimonials, and video with you. If you know anyone that might be interested please foreword this email to them. My number is 512 618 7075 if you have any additional questions. 

    THANKS!

    Kimberly Rice

  9. Mariana76am says:

    I live in Dallas, and want to thank you for sharing your story and creating something like this.  I am 13 weeks pregnant tomorrow and had part 1 of my screening done.  I am on bed rest and the genetics counselor called me today to tell me I have a 1 in 9 chance of having a baby with down syndrome.  I am 35 years old and have had two miscarriages already.  I was not necessarily surprised, but saddened for a moment.  I was scared at what would happen, what my child would go thorugh, if my husband and I could get through this, and then finally overwhelmed by thoughts of what would happen if my M.S. (which is in remission) started up again.  I still don’t know what will happen and would be lying if I said I didn’t want my baby to be born as one of the other 8 in the statistics they gave me today, but found TREMENDOUS peace in hearing your story and seeing little Noah’s pictures & videos.  Thank you again for sharing and reminding all of us that the miracle of life comes however God plans it.

    Much love and gratitude
    Mariana

  10. Hi Noahs Dad..
    I just want to say that you and your wife are so fortunate to have the solid relationship that you do.  Of course, your faith in God and his plan for you has everything to do with that!  My husband and I did not have that and, unfortunately, our marriage ended when my son, Boomer was only 4 years old.  He died of a heart attack just 7 years later…  Maybe, sometime, I will be able to share that story and can help others in doing so.  Oh, and the account of Noahs birth that you wrote about, brought back such a flood of memories!  That day will be clearly etched in my mind forever.  It was made even more traumatic by the way the hospital staff handled everything.  It should not be that way for anyone and hospital staff should be more educated in that area!  After my exerience, I volunteered myself as a resource at our local hospital so I could maybe be of help to anyone who might have a child born with a disability…  Anyway, God bless your family and I will be watching your little Noah grow up in your upcoming posts!  Sincerely, Deb  (Boomer’s mom!)

  11. Hi Noah’s Dad,
    Dear friends of ours have a gorgeous boy by the name of Asher who was born with Down’s Syndrome. Please check out their story and help us with our project inspired by Asher – to build the first accessible playground in Centre Wellington, ON. You reach a lot of people with your blog and Facebook, and I know my friends follow you closely, and would really appreciate your help with this.
    http://www.avivacommunityfund.org/ideas/acf13678
    Many thanks and thank you for sharing your amazing experiences with the world – it’s a wonderful thing you do.
    Sincerely,
    Kirsty

  12. Hi guys,

    We are off to see the paediatric cardiologist next week for our initial visit regarding Nate’s (our four month old born with Down syndrome) ventricular septal defect. Are there questions you can recommend we ask when we see him? I know he’s doing well but it’s just a huge worry as his momma, as I’m sure you guys can appreciate. Thanks so much! We follow the handsome mr Noah’s story almost daily! It’s so nice to hear from someone who is going through the same thing. Thanks again!

  13. Hello!

    I recently came across your work and love the support you’re providing to mothers and babies.

    Birth Memoirs is a newly-launched project, sharing birth stories of all kinds and resources for women. It would be my privilege to share your information with our readers. If you’re interested, I’d be happy to provide a link to your website on our Resources for Mamas page to be added in the next week.

    Would you be willing to share a link to Birth Memoirs and/or our How to Write Your Birth Story guide on your site? The new guide is an infographic featuring 8 helpful steps to encourage women to record the birth of their child – whether or not they choose to share it publicly.

    Please let me know what questions you may have. We would gladly appreciate your support as we work to encourage the anxious, inform the inquisitive and inspire everyone once born themselves.

    Take care,
    Christy Knutson
    Birth Memoirs

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