If you’re reading this, you probably just found out your baby has Down syndrome. Let me guess: you Googled “I just found out my baby has Down syndrome?”

It’s OK to laugh, because you know it’s true. We all do the same thing when we get the news. I mean, what else can you do?

The first thing I want to say about your baby is this:

CONGRATULATIONS! 

Whether you just had a baby or you’ve still got a few months to go, your new little chicken nugget is perfect. Beautiful. Yours.

But you’re scared. If you’ve heard anything about Down syndrome, all of it has probably been negative – maybe even from your doctors. They might have even suggested you terminate this pregnancy. You hear about potential health problems, milestones they may never reach, how the diagnosis might affect your family. None of that is what you imagined throughout your pregnancy. And you don’t want those awful things for your baby. You love that crying, pooping little thing. She’s perfect. Beautiful. Yours.

I’m here to tell you that Down syndrome doesn’t change how beautiful, perfect or poopy she is. All of those terrifying and awful mays and mights can happen to any child, not just the ones with Down syndrome. But those other kids come with congratulations, not warning labels. Why? Because our society hasn’t properly conditioned us to think of difference as a regular part of life. 

But the truth is that your baby isn’t suffering because of his extra chromosome. He will walk, talk, go to school, have friends, want a partner and seek independence. He has a bright future ahead of him. His siblings’ lives will be better because he is in it. So will yours. I cannot begin to describe for you how much better your child with Down syndrome will make your life. 

I cannot begin to describe for you how much better your child with Down syndrome will make your life. 

How do I know? Because after giving birth to a child with Down syndrome, I adopted another one. Yup. That’s absolutely right. I chose to adopt a kid with Down syndrome, because he had Down syndrome, and I’m only a little bit crazy (but the fun kind). I’ll tell you more about our family’s story in another post, but trust me: I know from first hand experience that having children with Down syndrome makes families part of the lucky few.

Enough from me. Here’s a collection of some of the best online resources for new PODS (parents of DS).

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Start Here: Living with Down syndrome

1. What is Down syndrome? Most humans have 46 chromosomes, but people with Down syndrome have an extra copy of chromosome 21. Having three copies just means some of the genes from chromosome 21 might show up differently. 
2. Advocate Frank Stephens gives a speech to a Congressional committee Because you should learn about Down syndrome from a person who actually has it.
3. Instagram: The best way to know what life will be like when your baby has Down syndrome is to see what other families look like!
   • Start with @etst, @katie__jameson and @rubysrainbow.
   • The hashtag #scootovernow specifically features Black families with DS.
   • You can also search more general hashtags like #downsyndromerocks #homieswithextrachromies #changingthefaceofbeauty #anythingbutsorry and #lifeisbetterwithyou.
   • The DS community on Instagram is amazingly warm, supportive and kind. Reach out to people individually; you’ll be surprised by how happy people are to connect and help. Make sure you follow the accounts of people with Down syndrome, and not only their parents.
4. Born This Way: On the same note, check out the lives of adults with Down syndrome with this now-canceled, Emmy award-winning show. It’s like The Real World, but with DS. My son is definitely a John Tucker. 
5. Cedar’s Story: A mom started a website to collect the stories of parents and their experiences with DS. Her name is Dawn. She’s also super nice. 

Down syndrome in depth

Now that you’re less freaked out, here are some more practical, less touchy-feely resources:

• From Diagnosis to Delivery This book is specifically written for expectant parents who are preparing for the birth of a baby with Down syndrome. It will answer your pregnancy and birth questions, validate your emotions, provide coping advice, and give you hope for the future. Diagnosis to Delivery is available online for free.
• Canadian Down Syndrome Society Why Canada and not the USA? Because like in so many other things, they’re doing a better job than us. Their resources are incredible, and their videos are hilarious. 
• People First Language  Your baby isn’t a “Downs baby” the same way your grandfather wasn’t a “cancer man.” Here’s a four-page article on choosing language that humanizes people with physical and developmental disabilities. Here’s a shorter chart. 
• The R Word You know what it is. Here’s a video about why you should never use it. Here’s a link to Spread the Word (to End the Word). Cut it from your vocabulary instantly, and then get ready to start cutting “friends” and family from your life if they won’t stop saying it.

Pediatric care when your baby has Down syndrome

Choose a pediatrician who talks about and treats your child like the individual she is, not like her diagnosis. Use of people first language is a bare minimum, and often indicates recent education about or personal experience with DS. I’ve found that older doctors are more likely to adhere to outdated misinformation about the condition; this isn’t true for all of them, but keep an ear out for red flags.

• Massachusetts General Hospital Down Syndrome Program – Patient Resources This program is run by a doctor who is the world’s leading DS researcher; Brian Skotko also has a sister with DS and has done a lot of research on sibling happiness. Doctors can have surprisingly grim, negative views about Down syndrome that are now known to be incorrect, especially if they’re older. Use their resources (and their tone!) to guide you to the right medical professionals for your child and your family. 
• If you’re in the DC metro area, I highly recommend Dr. Robin Witkin at Pediatric and Adolescent Care of Silver Spring. She became a pediatrician to work with kids like her big brother, who has Down syndrome. She speaks frankly about DS and every other health issue (she helped us get our “typical” kid through cancer), but will make you and your kid feel so blissfully average and normal. The other doctors in the practice are good, too (shout out to Dr. Paxton)!

Maryland Parent Resources

• PODS of PG County
• Down Syndrome Network of Montgomery County 
• Gigi’s Playhouse Annapolis – this is a free rec center for kids and adults with DS

DC Parent Resources 

• Note: there is no DC group. You should start one!
• Strong Start DC – The District provides free therapies up to age 3! 
• DC Katie Beckett/TEFRA waiver – The District also allows kids with DS to qualify for Medicaid using their income instead of their parents’ income

Do you have a child with Down syndrome? What are your favorite resources to share with new parents? Put them in the comments below.