The Down syndrome community is tight.
Oh, I know I’ve said this before. It’s tight and it can feel every bit as real as a bio family.
A bunch of us were coming up with our babies at the same time. We were either pregnant with a baby with Down syndrome or we had newborns with Down syndrome. We got to know each other through groups on Baby Center, where we gave each other support and tried to ease our fears. It’s not easy bringing a baby with Down syndrome into a world that sometimes seems determined to eradicate our children’s very existence.
We needed each other.
With our fears about the future of our babies looming larger than our hearts could reach, we needed each other desperately back then. It’s eased up with the years, and with dissipation of those same fears. But we still connect, share resources, comradery and community.
When Megan L asked what we wish we had known early on, regarding how different our fears would relay, and with the ensuing responses, I smiled. It’s all so good. The answers are so good. You gotta read the thread.
With permission, I share. The thread has been edited for clarity.
Hey Ds parent friends – what do you wish you had known early on?
Your kid with Ds won’t always be the hardest to parent.
Medicaid is a pain.
Your kid will be hilarious.
Even though Rachel Coleman’s voice and songs will grate on you after the ten millionth viewing, signing is amazing (and I honestly believe Rachel is a saint.)
You’ll meet amazing friends.
IEPs aren’t as scary as everyone makes them sound.
Amy L: YES. 100%
Be careful with what children’s shows you introduce early on because you will be watching that for the rest of your natural life
Melissa S: You don’t have to hang out only with the Ds community.
Your kid has a disability, it’s ok to hang out with people who have other disabilities. Or people without disabilities.
The disability community has its own history. Learn it.
You aren’t grieving *for* your child. You’re grieving the massive amount of internalized ableism you carry. It’s ok because you’re going to deal with it and be a better human for it.
Rachel Coleman gives amazing hugs and is freaking hilarious in “adult only” mode.
She will *absolutely* be your easiest kid to raise.
The hugs are amazing.
Megan L: I think the meeting other people in the disability community without Ds is often overlooked but so critical. Ellie made a lot of friends with other disabilities through baseball and school and I’m so thankful for that. And yes! Learn history! (I taught sped before Ellie)
Lisa N: The last day of school is a wonderful day. You don’t have to constantly measure your kid and compare all the time-you can just let them be who they are which is perfectly them.
Melissa KS: If you know one person with Down syndrome, you know one person with Down syndrome.
Each is a unique person and Ds expresses very uniquely to every individual.
As a parent you can set the tone for what disability means in your family life – my daughter has a very very positive perception of it, but we have raised her to be aware that some people may not be as comfortable as we are with it. That’s ok. Try to be their friend. But if they are still weird about it that is on them, not you.
You don’t have to like everyone with Down syndrome, or their parents.
I wish I had known how capable my daughter would be.
And how having her in our lives would be much more positive than I imagined when I got the diagnosis.
You don’t have to be an amazing person to do well as her parent. Just strive to be the parent she needs. That’s all.
Someday your child with Down syndrome may mock you for not being clever, or for her being cleverer than you are. She will be right in each of those instances.
Speech, math, and reading are all separate things. Your child may not get all of them, but they alter are a lot of separate intelligences. They miss one, don’t assume they can’t get the others.
Letting her figure things out independently and struggle isn’t mean. Do it often
Melissa M: Your list is perfect as are the other additions.
She is hilarious. The hugs are AMAZING.
One thing I was told at the beginning was not to focus on who your child would be as an adult. No one will drop them on your doorstep as a fully formed adult. You will grow, and learn, and change right along with your child.
Megan L: omg yes! And at 11, Ellie isn’t who I expected when she was 2. Yet caroline is pretty much exactly who we all expected. So. Much. Drama.
Melissa M: This is Bridget too. The drama is unbelievable and exhausting.
Jackie W: Yes! We got this advice when we had our prenatal diagnosis. And at almost 11, I never imagined the life we have
Lauren O: Independence will come and the key to that independence is found in setting the bar high from the get-go; living life with the vision of what you dream of for your child’s future until they can craft a vision of their own
Leaning into those strong visual memory skills that our children naturally possess promotes early literacy for many which may lead to greater academic outcomes in the long-run
The gift that our children are to their siblings (and their families as a whole) is a gift like none other
Sign your child up for that activity that they’re interested in even if you think that it may not necessarily be the best decision. Follow their lead – they may just surprise you
Believe in the good of those working with your child while also knowing enough to ensure that they’re genuine in their efforts … learning all that you can in an effort to meaningfully advocate for your child is imperative; discover a love of lifelong learning
When something doesn’t work, try again. Look at the issue through a difference lens or from an alternative perspective. Accommodations and modifications will assist your child in achieving their goals
It’s not always necessary to make mention that your child has an extra chromosome. Sign them up for that ballet class, soccer team, summer camp … whatever it is. If no real accommodations or modifications are necessary, there’s no need to make mention of your child’s diagnosis. At the end of the day, your kid is just that … a kid.
Always be forthcoming with regards to your vision for your child with anybody who may be spending a significant amount of time with them. Do you expect your child to be included alongside their non-disabled peers throughout their educational journey? Let that be known from your very first IEP meeting onward to ensure that everyone working with your child is on the same page
Go to that birthday party of a neurotypical classmate and don’t hover if you’re able … chances are, your child’s peers love and accept them for who they are. There’s no need to helicopter parent in an attempt to make the situation more comfortable for you
Be down to earth, kind, gracious, grateful, and willing to work in a collaborative manner with the IEP team while never losing sight of your values as well as your dreams for your child. This is the key to a positive working relationship with your team.
The way in which a child with Down syndrome completely changes the course of your life can leave you feeling shell shocked, but know that the community that you’re immediately welcomed into with open arms is a community of incredible individuals with a common cause … creating a life of boundless opportunity and belonging for our kids
Oh man … I could write a novel
Jackie W: Sometimes the things you worry about when they’re little become things you don’t care about when they’re older.
EVERY kid has their own personality regardless of disability and you can’t predict that.
Verbal ability does not equal cognition.
Kelly D: I debate printing that last one on a t-shirt sometimes.
More than a few kids with DS are “DS plus”. It’s the plus that is the challenge most of the time, NOT the DS!
(See: ADHD, anxiety, other health challenges, etc.)
Scattered skills are normal for children with DS. They can be 15 and 2 at the same time!
So are scattered interests (age appropriate and not).
Jackie W Yes!!
Samantha B: It’s going to be ok.
My son with DS will be the glue to our family.
Milestones are important but I shouldn’t be in a hurry to reach them.
Having Bodie will make my life slower, sweeter, and more fun.
Emma B: The friends and experiences along the way are unmatched.
Definitely do not allow others to set the bar low because of a diagnosis. Honestly never would have imagined 5th grade Ruby would be multiplying and dividing fractions, but here we are.
Meriah: These are awesome. I think mine would echo what others have already said, but also that my kid would be a bookworm. I wouldn’t have expected that and it constantly delights me
Jackie W: Lauren is a bookworm too and it’s such a delight!
Michelle A: I never realized my daughter would have better social skills than a lot of her typical peers, that’s she can more independent than her brothers (who are 3 and 7 years older than her ), and that she is much easier to parent than her brothers.
Kay T: Don’t assume the teacher, administrator or a doctor are always correct.
And this was it.
It’s surreal to look back now and remember my fears. I remember being so scared that Moxie wouldn’t be sparkly, that somehow she’d be a different kind of human being than me? It makes no sense, but there you have it.
What were some of your fears, and how have your kids different from what you expected?
Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.