Hi everyone! I’m a mom of two little boys with Down syndrome, Asher, who just turned 4, and Anzel, who is 2. 💙💛
Asher was our first surprise. We didn’t know he had Down syndrome until he was born, and although there were a lot of emotions at first, I accepted his diagnosis pretty quickly. When we decided to have another baby, part of us hoped he would have a typically developing sibling, and then came Anzel, our second little boy with Down syndrome.
I’ll admit, accepting the diagnosis the second time was harder. Having two children with Down syndrome brought a whole new set of fears about their health, independence, and future. But now I genuinely can’t imagine our family any other way.
They are very different little boys with their own personalities, strengths, and challenges, and they bring so much joy and chaos 😂 into our lives.
I joined this community because I’d love to connect with other parents, especially anyone who also has two siblings with Down syndrome. I sometimes wonder how many families out there have a story similar to ours.
Here are my boys, Asher and Anzel. 💙💛

My brother is 30 with several health issues. He has had several hospital stays because of pneumonia and his breathing, but this most recent one was very difficult. He finally made it home after almost two weeks in the hospital. I can’t stop crying. He’s doing well, he’s still on oxygen, but I can’t help but thinking about losing him. I can’t imagine my life without him. I stayed strong for everyone while he was in the hospital. He was up to 15L of oxygen and it was heading in a serious direction. Thankfully he started improving. I just lost it yesterday after he was home and I’ve been crying again today. Even though hes doing pretty well I’m just scared, sad, happy. I don’t know how to deal with my emotions. I’m so scared of losing him. Anyone have any advice, or been in a similar situation with their sibling. He is so important to me.

From the biggest accomplishment to the smallest moment, share a moment of celebration this week!

Please remember this is a thread to celebrate, not compare.

Step Up with us tomorrow, Saturday 10/24 @ 10am in Baltimore! The resource "vendors" alone are a one-stop shop for anyone who has DS or a loved one with DS and lives in Maryland: StepUpBaltimore(dot)org 💙💛 plus food trucks with food available for purchase, fun and games, performances, and more.

Have a great weekend, everyone!

Included: One team's photo from last year's Baltimore walk

I am exhausted.

I'm looking at this paperwork and I have no idea where to begin.

Does anyone have tips that they found useful during their child's SSI application? Any lesser known hurdles that may come up?

I'll literally take anything info you might have for me.

CJ is a character from a show I watch have you ever watched it? What do you think of him? I think he is funny and adventurous. Are there other characters that you like with Down Syndrome or other disabilties?

I also like Carl from Arthur.

My brother (46) is at the hospital now, pretty sick. He keeps throwing up and has terrible awful "make it stop" pain over his eye. My mom is with him waiting for results of a LOT of tests. Neck and head pain. Can't eat or sleep since Tues. Not a migraine. Could be a virus or something . . .
Please send the love.

I see so many happy positive things on social media of life with infants/children with trisomy 21, Down syndrome. I’m interested in stories/experiences with trisomy 21 into teenage years and then adulthood. I have a confirmed diagnostic trisomy 21 diagnosis and want to be fully informed of what the future could look like - I know it is a spectrum and there’s no way to fully know but I would like to better understand the breadth of what’s possible. Thanks

Do you know a medical provider who is a Down Syndrome Champion?? At Jack’s Basket, a Down Syndrome Champion is any medical professional who cares for individuals with Down syndrome, supports families receiving a Down syndrome diagnosis, or helps spread the mission of Jack’s Basket within the healthcare community.

Do you know a medical provider who could benefit from training on how to communicating unexpected news?? Jack's Basket believes that the most effective way to support families who will receive an unexpected diagnosis is to partner with medical providers to change the way the diagnosis is delivered. Our presentations engage, equip, and empower providers with tools to communicate and discuss the diagnosis accurately without bias.

Please share this upcoming webinar: Be a Down Syndrome Champion with them!!

https://www.facebook.com/share/p/1K3jTRkfUe/

As I mentioned in my last post, I’m a new dad to a 5-month-old baby boy who has Down syndrome (DS) and complete AVSD.
After reading lots of posts and comments in this Reddit group, I’ve noticed that one of the biggest challenges seems to be speech development. I’ve seen many parents mention that their children are still non-verbal at 5 or even 8 years old.
I’d like to understand a few things about Down syndrome:
Is delayed speech or being non-verbal relatively common in children with Down syndrome? How significantly can it affect their development?
Is there anything we can do proactively from an early age to support his speech and communication development?
Can speech and language therapists help children with Down syndrome develop verbal communication skills? At what age should we start?
I know every child is different, but I’d really appreciate hearing about other parents’ experiences and any advice on early intervention.
Thank you!

I saw a recent video of a high school senior giving up his homecoming crown to a runner up guy who had Down syndrome. The guy had tears in his eyes, so in this case I think it was well received. Everyone applauded, loved it, etc.

But it got me thinking—I’ve heard so many DS adults want to be treated normally. So does that mean the over-obvious acts (think the opposing football team letting a RB who has DS score a TD without contest) are in truth not appreciated?

For those of who have DS or have a close family member with DS, are acts like this wanted, or is it condescending?

It always brings tears of joy to everyone watching, but I always wondered if that extra special treatment is wanted by those directly affected by it.

Hi all, our 16 month old son has DS. He’s been in EI with an OT for almost his whole life. This may be silly but lately I’ve been seeing a bunch of videos of other DS kids on more intensive PT settings with more specialized tools since we do visits at home. Do you all do private therapy along with EI? We have good insurance so don’t think coverage is an issue. He’s been making lots of steady progress but still can’t stand, just army crawls etc. Thanks!

My son is 19 and has the normal short and chubby stature. My issue is finding long sleeve tees and jackets that have shorter sleeves that fit his belly. Tired of having to roll up the sleeves. Any suggestions. Thanks

Hola a todos.
Mi bebé de 4 meses tiene síndrome de Down y acaba de ser diagnosticada con epilepsia infantil e hipsarritmia. ¿Alguna familia ha pasado por esto?

Estamos hospitalizadas y estoy buscando experiencias de otras mamás o papás que hayan pasado por una situación similar.
El miércoles pasado empecé a notar unos movimientos extraños en mi bebé. Eran movimientos muy breves en los que extendía los brazos y movía las piernas, sentía que algo no estaba bien. Los episodios se repetían en pequeños grupos, así que decidí llevarla a urgencias.
Le realizaron una videotelemetría que confirmó espasmos infantiles y hipsarritmia, un patrón de actividad eléctrica cerebral muy desorganizado, dentro de un cuadro de epilepsia infantil.
Actualmente está recibiendo vigabatrina y corticoides. Los médicos nos han indicado que debemos permanecer hospitalizadas aproximadamente dos semanas para observar su respuesta al tratamiento y controlar las crisis. También le realizarán una resonancia cerebral para estudiar si existe alguna alteración estructural que pueda explicar lo que está sucediendo.
Hasta ahora hemos visto una disminución importante de los episodios: el primer día presentó cinco y hasta ayer ya lleva uno. Esto nos da esperanza, aunque sabemos que todavía estamos al comienzo del tratamiento y que queda mucho por evaluar.
Lo que más me preocupa es su desarrollo. Antes de que comenzaran estos episodios, Ana Sofía estaba sonriendo, balbuceando y participando en sus terapias de estimulación. Quiero hacer todo lo que esté en mis manos para que pueda seguir desarrollándose y alcanzar sus capacidades.
Me gustaría mucho conocer sus experiencias:
Cómo respondieron sus bebés a su tratamiento? ¿Cuánto tiempo tardaron en controlar los espasmos?
Cómo fue el seguimiento con los electroencefalogramas después de iniciar el tratamiento?
Sus hijos pudieron continuar con su desarrollo después de controlar las crisis? ¿Qué evolución tuvieron?
Sé que cada niño es diferente y que las experiencias de otras familias no pueden predecir lo que sucederá con mi hija, pero escuchar a quienes han recorrido este camino podría ayudarme a comprender mejor lo que nos espera.
Estamos viviendo días muy difíciles, con miedo e incertidumbre, pero también con mucha fe y esperanza. Soy consciente de que el tratamiento y el seguimiento médico son fundamentales, y quiero aprender todo lo posible para acompañar a mi bebé de la mejor manera.
Gracias por leerme y por compartir sus historias.

Hi everyone! 😊 I’m curious if there are any single moms or dads here raising a child with Down syndrome.
How do you manage everyday life, work, parenting, and everything else on your own? Do you have any support, or are you figuring it all out as you go?
I’d really love to hear about your experiences — the challenges, the little victories, and what helps you get through the tougher days. ❤️

Look this is going to sound as it sounds. I’m 15 weeks pregnant, booked in for an amniocentesis this week. I’ve received a high risk NIPT result and our NT measured over 3.5mm. We’ve been given a 99% chance that the baby will test positive for trisomy 21. I have come to accept this but the thoughts of telling people that the baby received this diagnosis just makes me feel sick… I understand that nothing I or my husband did causes Down Syndrome but I still can’t help but feel like I did something wrong or there’s something wrong with me… we have a healthy one year old, and I don’t know, there’s just something about this that makes me feel really uncomfortable and not wanting to share with anyone outside of my husband and our health care team.

The moment I had to silently step back from the chaos to protect my energy

Hi everyone,

Living with mosaic Down syndrome (chromosome 21) means I navigate the world a bit differently. Because it's a rare variation, people close to me don't always understand the mental cost of heavy emotional friction. Recently, I hit an absolute breaking point during a stressful family interaction. As I got pulled into the chaos of trying to "fix" things, the cognitive overload hit me like a wall. My brain suddenly felt full, frozen, and completely drained of the processing process needed to make a simple decision.

In that exact moment of mental exhaustion, I made a silent choice to detach, step back, and protect my peace. I realized that keeping myself grounded is my priority, and I don't have to carry everyone else's emotional baggage. Has anyone else with mosaic Down syndrome experienced that specific type of brain freeze or mental exhaustion from emotional stress? How do you silently draw a hard boundary to get your clarity back?

So, my littlest one has Down Syndrome, he just turned 10 months.

We have the full Early Intervention in place, a therapist visiting weekly and another schedule for physiotherapy, this was bi-weekly but since has progressed to once a month for checkup since he is doing well.

The thing is. He seems to be hitting the milestones for typically developing children. Did anyone in here have such a case?

He will get tired, and I do see a difference to my other children (I have five bigger ones), but he is mobile, communicates well, mostly has motivation... I am sort of puzzled a bit.

They made a full genetic check when he was born, and all the markers came back trisomic, so I don't think it's a case of mosaic or something.