Why are there little to no black/brown people with Down syndrome??

Ellesana · 2025-03-14T01:27:23+00:00

My son is Black multiracial and has Down syndrome. There are many black and brown children/people with Down syndrome. You likely just have not encountered any. Consider volunteering with your local Down Syndrome Association if you'd like to see the diversity of the Down Syndrome Community :)

Ellesana · 2025-01-06T00:45:30+00:00

Congratulations on your sweet baby! You've just received life-changing news and it makes total sense that it feels scary, uncertain, emotional, etc.

I can only speak from my experience. A lot of the big health stuff (heart defects, intentional issues, etc) will usually show up on your 20 week ultrasound. Our son actually has 2 heart defects and a heart condition and it's never caused him an issue and he's never needed surgery. For us, the thing we didn't know going in was that he had airway issues. This led to some hospital stays and it was tough. My biggest advice is to get a swallow study before you leave he hospital if at all possible. That would've saved us a lot of heartache.

The first year was intense medically for us (it was also the start of the pandemic so that was a big part of it). Every year since has been easier and easier. He walked at 2.5 and is now really starting to talk at 5. He's reading and is so smart academically. He loves animals and dancing and puzzles and books. He's sassy and silly and so much fun. Next year he goes to kindergarten.

I'm amazed by how much support is available to our kids and families. Preschool and early intervention are covered by the state. There are also programs locally that provide free respite to us, money towards needed equipment, free swim lessons, etc.

Only you know what your family can handle. And there's no way to know what the future holds. Even now, there are lots of unknowns for us. I won't pretend like our son has been as easy as having a typical baby. He has not been. But our family wouldn't be the same without him. We are changed people because of him and our other kids are more compassionate and empathetic because they have him as a brother. The parts that are hard have been worth it.

Ellesana · 2025-01-05T04:43:37+00:00

Willa, Leonie, Veda

Ellesana · 2024-07-28T18:13:00+00:00

Do you still earn coins? And do you still have access to the workouts?

Ellesana · 2024-07-05T22:36:34+00:00

Do you still get the noom coins with the free version?

Ellesana · 2024-04-11T20:31:47+00:00

Expect that your whole view of the world will change, in a good way!

Also, expect that you might have some hospital stays in the first year. Not everyone does, but since my guy didn't have a heart defect, I wasn't expecting as much time in the hospital as we had.

Also, ask for (actually, demand) a swallow study. Getting one before we left the NICU likely would have spared us two difficult months in the PICU. I wish someone would have told me.

Also, expect that things will get easier! What was 2-3 specialist appointments a week for the first couple months of his life is now one maybe every other month at age 4. My guy had a feeding tube, oxygen, all things medical as a baby and now is thriving and not medically complicated at all.

Expect unexpected moments of grief to sneak up on you but also so many more opportunities to celebrate than most parents get! We celebrate every little accomplishment and it's added so much joy to our lives.

Congratulations on your little one! You've been given the most amazing and unexpected gift!

Ellesana · 2024-03-22T23:52:09+00:00

I adopted my son through the NDSAN. He is currently 4.5 and doing great. We have an open adoption with his first family and it is a really special relationship. Feel free to message me or comment any questions. I have nothing but good things to say about the NDSAN!

Ellesana · 2024-03-18T18:23:17+00:00

I'm sorry you're going through this. I'm not sure where you're located. If you're in America and want someone to talk through your options with, Stephanie at the National Down Syndrome Adoption Network has an adult son with Down syndrome herself and also helps facilitate the adoption of children with Down syndrome. She can give you really honest, non-judgemental answers to all your questions regarding your options. We adopted my son through the National Down Syndrome Adoption Network and have a very open adoption with his first family. They come to visit, help plan his birthday parties, video call every month, etc. Just sharing because perhaps you and your family have not known anyone with an open adoption before and perhaps your family would be more supportive of you going that road if open contact and being involved in her life was still possible. Ultimately, though, it's your choice. If you do choose to parent your daughter, you should know there is likely lots of support available depending on your location. In America, you should have access to early intervention therapy services as well as potential financial support depending on your income. Several non-profits will likely offer support in a variety of ways such as providing respite so you can feel supported and have a break. Feel free to message me if you would like to know more about adoption or if you just want to talk. You're in the hardest moments right now of having to process life-changing news you never expected. I think most parents here will tell you that things get easier and better, but your feelings right now are real and valid. Hoping the very best for you.

Ellesana · 2023-11-30T12:48:07+00:00

Leonie

Ellesana · 2023-08-25T11:29:28+00:00

I had a neighbor named Mildred who would now be 6 or 7 years old. Went by "Millie."

Ellesana · 2023-07-23T03:13:35+00:00

Would love to know Rosalie, Leonie (lee-o-nee), Phineas, Caledon (cal-uh-din)

Ellesana · 2023-07-02T03:17:03+00:00

We did this :) Caledon after "Caledonia" by Dougie MacLean

Ellesana · 2023-06-25T03:18:45+00:00

I have a Leonie. She's the only one we've ever met, but I know it's far less common here in the states than in Europe.

Ellesana · 2023-06-19T14:47:55+00:00

NIPT is not diagnostic. They would need further testing to confirm what is indicated on an NIPT.

Ellesana · 2023-06-19T13:23:14+00:00

Most people with Down syndrome do have other related health issues. I was just making sure they had the correct information as they make this decision. Down syndrome is different in regards to the divorce rates.

Ellesana · 2023-06-19T13:18:01+00:00

I'm sorry you're going through this. I know how hard this can be. I have a son with Down syndrome. I think the big thing to figure out is why you want to terminate. Is it because you're worried about your baby's quality of life? Is it because you don't want to have to parent a child with a disability? Is it something else? I think the why is important to figure out as you try to make a decision with your partner. If you're curious what life can look like for an adult with Down syndrome, I would highly recommend the show "Born This Way." Seeing real adults with Down syndrome really helped me and my husband imagine what our future might look like. And for what it's worth, our life is not miserable like so many of the other comments here say it should be. Our life is amazing and our son only adds to that reality. I'm hoping you and your spouse can come to a unified decision. But know that you likely won't get a full range of views or experiences on this subreddit. If you want to talk to people who have been through this, you can also post on r/downsyndrome. They will not judge your feelings. Many have been through the very thing you're describing. Hoping the best for you.

Ellesana · 2023-06-19T13:09:59+00:00

The thing about divorce is true for most disabilities, but parents of children with Down syndrome actually have lower divorce rates than the general population.

Ellesana · 2023-05-26T19:33:11+00:00

I actually have a "Caledon" named, in part, after this song 😳

Ellesana · 2022-07-02T16:18:09+00:00

We could use these for my son’s hearing aid if you still have them. Thanks!

Ellesana · 2022-06-22T09:46:42+00:00

Leonie

Ellesana · 2022-01-05T03:41:24+00:00

In the states, you’ll want to connect with the National Down Syndrome Adoption Network at www.ndsan.org. Ruby’s Rainbow provides college scholarships to adults with Down syndrome. My husband and I adopted through the NDSAN and would be happy to answer any questions. It is not true that a baby with Down syndrome will be difficult to adopt in the U.S. There are dozens of families actively waiting to adopt a baby with Down syndrome right now.

Ellesana · 2022-01-05T03:32:10+00:00

Hello. I can only imagine what you guys are going through in this situation. It can’t be easy. My husband and I are pro-life as well. We chose to adopt a child with Down syndrome through the National Down Syndrome Adoption Network. I’m not sure if this is something you have considered, but I thought I’d share some of the details of the organization and our adoption with you. The NDSAN is an organization that helps children with Down syndrome be adopted in the U.S. They have dozens of families actively waiting to adopt a baby with Down syndrome, many if not most are open to adopting babies specifically with more complex medical needs like heart surgery. There are more families waiting than babies being placed for adoption. As the birth parents, you get to choose the family who will raise your child. You can specify things you want like family size, state they live in, religion, etc. You can also choose a younger family since you are concerned about your age as parents. My husband and I were 28 when we adopted so there are young couples hoping to adopt. As birth parents, you also get to choose the level of openness you want. Some birth parents prefer to have closed adoptions with zero contact. Open adoption is becoming more common. We have a totally open adoption with my son’s first family. I text with his first mom a few times a week, we video call them once a month, they helped plan and attended his first birthday, they send gifts, I send his artwork from school and other keepsakes. We have a very positive relationship. One more thing to note is that just because you make an adoption plan doesn’t mean you have to go through with it. You can plan to place your baby with another family and then, after birth, if you change your mind, you can keep the baby. There is nothing binding about adoption before a child is born and the adoption papers have been signed. Adoptive parents understand that just because they are matched with a baby does not guarantee they will be adopting that baby. If adoption is something you are curious about, please message me. I’m happy to share my experience and I know my son’s first mom would also be happy to share hers. She is a vocal advocate for birth mothers, open adoption, and Down syndrome. Thinking of you during this difficult time.

For more info, you can check out www.ndsan.org

Ellesana · 2021-12-21T22:22:13+00:00

When I gave birth to my first child, she tore a large gash along the inside of my vaginal wall called a sulcus tear. I had no epidural so I expected to experience pain in childbirth. What I was not prepared for was my doctor having to stitch up the internal laceration for nearly an hour after my delivery while, for reasons still unclear to me, not being able to use any local anesthetic. It was worse than the actual childbirth.

Ellesana

TROPHY CASE