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I have to say Thank you for your website, I too have a baby with DS. He is 13 month’s old and there does not go a day without him doing something that amazes us.He is awesome just like Noah. I have been glued to your site all day long. Aside from the adorable pictures, videos and milestone alerts I especially love all the informative information you post. I have shared your site with 5 of the moms(and dads) who live here in Del Rio, Texas. We are in the process of getting our own “chapter” here and appreciate the information you post to help us and give us idea’s to help our little one’s with DS . Continue the good job and may God Bless you and your family as he has blessed us. :0)

Dear Noah & Noah’s Dad,

So I just got a tip from someone to start following your website. 3 weeks ago I became an aunt for the first time! Our first baby was born in the family, my big brother was now a father and my parents grandparents 🙂 When my brother called to tell me he became a father I could tell something was wrong. He did not sound happy and excited, but really sad. Lara my niece has Down Syndrome…. Which of course was a shock to all of us. I think that we were mostly worried about my brother and his girlfriend. It is there first child and they do not know what to expect, will she be healthy, how will she develop, what will the future hold… Questions which will be answered over the coming years.
Another thing that I personally experienced is that for some reason I found it difficult to tell colleagues and friends that I became an aunt… Which is weird because I was very excited (still am) but for some reason I did not feel like sharing this with other people… But I did tell people I became an aunt and I told it with pride, because under any other circumstances I would be proud and excited so why should this change? And other thing I noticed is that other people (colleagues/friends) are less excited, they do not ask how the baby is doing, they do not say “oh what a cute baby” when I show pictures… This is what makes me sad, and I feel it is my responsibility to let people know I am proud of my little niece and that she is the cutest thing ever!!!

I will send your website to my brother and his girl friend and hope it will help them on their journey of raising their daughter,

Kind regards,

Lieke

Hola, soy la muy FELIZ madre de un nino con la condición de síndrome down. en la prueba que hacen durante el embarazo mi hijo no salio con la condición.

Al contrario conocí a una madre que la prueba durante el embarazo decía que venia con síndrome down y no fue así, imagina si la hubiera abortado.

cuando nacio mi hijo ademas de estar pasando por una situacion personal muy dificil, llegaron 2 medicos a mi cuarto luego de haber dado a luz y con caras tristes me informaron que mi hijo tenia ciertos rasgos de sindrome down, y que si yo estaba de acuerdo en que le hicieran las pruebas para estar seguros. les dije que si. cuando se fueron del cuarto el cual compartia con otra cama una muchacha y su madre que habia dado a luz, hubo un silencio absoluto en la habitacion, yo estaba sola, luego llego mi madre y una sobrina y les dije muy triste lo que me habian dicho.

siendo una profesional busque en mi mente que sabia yo de sindrome down? y no me llegaba nada a mi mente, fue como un archivo bloqueado del cual yo no sabia nada. cai en un limbo o en un hoyo profundo y quede colgando sin saber que pensar ni que decir. mi madre se puso triste tambien.

no me trajeron el bebe al cuarto como yo habia pedido y fui a darle el pecho sin instrucciones ni nadie que me dijera nada sobre la forma de ser de mi bebe, demas esta decir que era el bebe mas hermoso de todos los nacidos ese dia, las personas lo veian a traves del cristal y decian que era el mas hermoso de todos. pero no habia felcidad, no habia fiesta, solo un sentimiento de cuanto lo siento.

a diferencia de cuando tuve mi hijo mayor que todo el mundo reia, felicitaba,

cuando fui a darle el pecho mi hijo era bien tranquilo, casi no abria los ojitos y tenia un ojo mas cerrado que el otro, no quiso tomar lehe de mi pecho, se pasaba durmiendo. tenia todas esas dudas y muchas mas pero nadie me oriento.

cuando lleve mi hijo a casa me llamaron de una fundacion de sindrome down me dijeron y enviaron informaciones, me invitaron a ir pero me quedaba muy lejos y nunca fui. lei todo lo que pude, y lo comenze con las ayudas que me ofrecieron de las clinicas, evaluaciones, terapias poco a poco desde que nacio, todo lo que he averiguado lo consigo para mi hijo.

creo que he sido muy afortunada por encaminar a mi hijo hacia una vida independiente y normal. academicamente esta por grado y lucho por que sea tratado con respeto y los derechos que tiene y nadie se los puede quitar. estoy dispuesta a llegar a todos los foros pertinentes por que mi hijo tenga una vida digna como lo he hecho con mi hijo mayor.

demas esta decir que Fernando trajo a nuestras vidas un amor de proporciones incalculables. mi hijo mayor y yo agradecemos a Dios a cada momento por habernos dado el placer y el honor de tenerlo con nosotros, es quien me anima cuando decaigo, quien me da fuerzas cuando las pierdo, es el que me refuerza la paz y la esperanza, es quien me ayuda a luchar aunque este cansada. la familia, mi mama, lo aman mas alla de lo explicable. cuando mi mama esta con Fernando ella olvida los achaques, ella es Feliz.

Gracias a Dios Fernando nacio con buena salud y hemos conseguido ayudas academicas y de terapias para el. es una gran lucha y esfuerzo en que a veces nos olvidamos de nosotros mismos, pero el resultado vale la pena.

Espero en Dios ver a Fernando terminar sus estudios, lograr un trabajo digno, y tener una familia que lo ame. asi quisiera que en la medida de cada nino con sindrome down , que para mi no son angeles como hay gente que les dice, para mi son ninos, adolescentes, personas, que logren las metas que su capacidad les permita y la sociedad y familia les ayuden a lograrlo. quisiera ayudar con mas a otros que necesiten orientacion, ayuda, comprension en este mundo de nuestros hijos.

I love, love, love your open letter to an ob/gyn post! I live in a smaller community a couple of hours outside of Houston. There are many less resources and our doctors here tend to be even farther behind times. In fact there were so few resources when my son was born that I started my own Down syndrome support group. We now have our own Buddy Walk and many involved families. One of the campaigns we began delivers welcome baskets to new babies born/or unborn with Down syndrome. I have offered to meet families many times but have never been asked to by a doctor. I would love to include your open letter when I make my visits to the local offices!

I am worry for my son

Thankyou for sharing your posts with us. I have a three year old daughter with DS and I really relate with your your story. My husband and I did not get the testing when I was pregnant with Laura as we new that it would not make a difference for us, so when she was born we were shocked to say the least, she was whisked away from us and it seemed like hours before any news came of her although in my heart I knew that she was DS. Those first 24 hours were hard, I was in shock and did not want to see my baby, she was in special care and required oxygen and all sorts of tests were being performed on her. On the second night I prayed I said Lord I know that you love this child, and I am sorry but I am not feeling the Love please Lord give me your love her. My prayer was answered immediately the Lord directed me to Psalm 139:14 ” I praise you because I am fearfully and wonderfully made” something shifted in my spirit that night and I was filled with a mother’s love for her baby. Since then Laura has taken my family on a beautiful journey , I have 4 other children ranging form 23 to 3 (laura our baby) and we all adore her, she is smart, funny, loving, quirky and just a true blessing to our family. We embrace her uniqueness, as we are all created unique and we wouldn’t have her any other way Down Syndrome is part of who she is .

When I was a pre-teen I met a little cousin for the first time. He was blond, blue-eyed, always grinning and into mischief, and I was fascinated with him. I felt the definite impression, “This will be your life’s work.” As a kid, I very literally assumed that this meant I would work with kids with Down syndrome. It has turned out that as a special ed teacher who has always loved working with kids, period, I have been privileged to work with kids with all kinds of conditions. I also work with a special needs Boy Scout troop. Many of my Scouts are also very active in Special O and a few of them have world records in their own events! They have traveled to parts of the world that I will never see. They are strong, positive, talented, interactive, social, loving, fun people! If this is not a family position or a career field for you, there are wonderful opportunities in volunteerism and community service. Forget “the r-word” and open your heart!

Noah is an amazing little guy, love your post about him.

Hey Noah and Noah’s Dad,

If you are ever interested in sharing your story and your inspiration with children and families in Africa please let me know. We need more families like yours around the world. Just showing the love you have for each other and the acceptance can have an incredible impact on the way families treat children with disabilities in Africa.

I’d like to join with your friends. I have a DS blog on Word Press which describes the birth of my baby and her later shenanigans, and am finishing up a blog post called “My Name Is Mandy.” I have not meet criteria of weekly blogs because I have not announced the blog before. I also am new and don’t know how to use “reblog,” “share,” etc.

I am on the Downs Syndrome page of Nan Mykel.com. Thanks for the great work you are doing! I believe there are 2 DS pages on my blog. One is a mistake and empty and I can’t get ride of, so try again if that one comes up.
I’ll send an image as soon as I’m certain how.

Noah is precious,m as you know! Visit our site? Mandy is now 44.

My 21 year old nephew was just let go from McDonald’s in NJ. He was hired for permanent position. He has autism spectrum disorder and was hired with a job coach. The manager immediately complained about him. He complained when my nephew could not do a task the first time explained, complained that my nephew did not “look like” he wanted to work there. He complained my nephew looked “anxious”. The job coach was not allowed behind the counter to assist him. There was no winning with this manager. He was just let go because summer is over and manager is now stating he was hired temporary. I just checked web site at this location and they are hiring people to do what my nephew was doing.

Hello All,
I run a farm here in Leicester, NC. About 5 minutes from Asheville. Several years ago I worked a a GM for Johnson and Johnson where we had a great relationship with special needs community. We employed about 15 special needs folks for part time work and it was awesome for everyone!!!

Does that type of community exist here in Asheville.

Thanks,
Tony
828-838-4247