u/Ok_Cream3748

Pregnant with a DS baby and wondering how other families (especially in the US) manage childcare and work arrangements (especially for when the baby is age 0-5). My husband and I currently work full-time; he earns the higher wage, but I have the superior benefits so it will likely make more sense for him to reduce his work hours than for me to do so, or to leave the workforce. My job is also fully remote. We are technically middle class, but live in a city with a high cost of living and are doing just OK financially. We had plans to move somewhere with a lower cost of living, but will likely wait until our child is a bit older as our state has relatively good support for special needs children.

We are in our 40s and 50s, and our parents are out of state and also quite elderly. We don’t have siblings, other local family, or even local friends we can count on for childcare help.

Questions for the parents out there:

- How is childcare arranged for your DS child? What is a typical weekly schedule?

- If in a 2-income household, does one of you have to stay home or work reduced hours?

- What is your income/how has it changed since your DS child was born? How do you make finances work, given childcare and/or increased medical costs?

I realize the question of childcare is not unique to having a DS child; however I am more versed on the opportunities available with neurotypical infants/ toddlers (for instance neighborhood nanny shares, etc.) to manage the childcare (financial) burdens. I also realize we would likely be eligible for state support, but I wanted to hear from parents who have direct experience what the reality of childcare actually looks like.

Thank you for your insights!

Pregnant with DS baby and have a question about the different types of DS. I frequently read (mostly in Reddit and Threads comments and not corroborated elsewhere) that the “high-functioning” DS individuals (those who are highly verbal, athletic, graduate college, hold jobs, etc.) are the ones in the 1-2% minority who have Mosaic DS, while the overwhelming majority of individuals with DS have more significant physical and mental limitations.

I recognize a lot of ableism in those comments, and my aim here is not to assess the inherent value or desirability of people with different types of DS, but to be able to anticipate the intensity of care required. My question to parents and siblings of folks with DS: can you share a bit about the challenges and limitations your family member has? There is a diversity of presentations and I’m trying to learn more about this range to be better prepared.

Thank you!

My husband and I recently received NIPT results that were positive for Trisomy 21. We have been up and down emotionally about this, but have come to a place of acceptance; we believe this experience will be both beautiful and very difficult.

We know people who have DS in real life and love them very much; we have no problem loving/valuing/accepting a child with DS. Since receiving the news, we have also done tremendous amounts of reading and research. This is where the information can get frustrating: on the one hand there are the online influencers who present an overly rosy picture of the experience, and on the other are online posts from people who resent/regret their DS child or sibling. It’s been hard to really see a truthful and balanced picture.

Additionally so many of the depictions of the experience that we’ve seen are of 1) affluent parents or 2) young parents. We are in our 40s and 50s. While we are both healthy and fit now, we cannot assume our health and stamina will remain this good in the years to come. One or both of us will likely pass on when the child is in her 30s… is it cruel to proceed with this pregnancy knowing that? We don’t really have loved ones that would be able to care for the child, and those who might are around our age so would not be around or fit for this task.

Additionally we are also not well off. Not technically poor, but we work very very hard and are doing just OK, though neither of us really have much retirement savings. If we had a special needs child and one of us had to leave our jobs or reduce our work hours, we would definitely be in financial trouble.

Given these circumstances, I don’t know if it would be kind or fair to our baby to proceed with this pregnancy. I would love to hear the perspective of others who have more insight into raising a child with DS, or who may also be in our specific circumstances with respect to being older parents or financially precarious.

Thank you!