Down Syndrome Etiquette

Down syndrome Etiquette Jax, FL Childbirth Education

Down Syndrome Etiquette

Down syndrome etiquette is important and is blog worthy! Please take 5 minutes out of your day to read and share this with others on any platform you can. Approximately one in every 700 babies in the United States is born with Down syndrome , making Down syndrome the most common chromosomal condition. Yet there’s still a stigma surrounding Down syndrome (DS).

First Coast Doulas knows it’s super important to be respectful of other humans along their journey in life.

It’s very frustrating for me and many others when we hear people say certain things about people with DS. Frustration doesn’t help change things, but being an advocate and an ally does. So, I decided to write this blog about Down syndrome etiquette to help others who may be confused about what to say or may unknowingly be saying things that are offensive or hurtful to others, yes, even those without Down syndrome.

I’m always learning new things and asking important questions like;

  • What can I do when I hear x, y, and z?
  • What do you want others to know about Down syndrome?
  • What it’s like living with Down syndrome or raising children who were born DS?

One thing I can tell you is that our words matter!

Being a parent is exhausting. Being a parent or caregiver to a person who has DS is double duty exhausting. Not only are they raising their child, they’re likely attending therapy appointments (occupational, speech, and physical) with their children, and being advocates for all people with Down Syndrome. It should be no surprise that sometimes they don’t have the “extra” energy to correct others. To be honest, the responsibility falls on us as individuals to do better and treat people with respect.

Here are some things to consider:

“Downs baby” versus “baby with Down syndrome”, “She has Downs” versus “She has Down syndrome” 

DS doesn’t define who a person is. Think about something you don’t like about yourself and put a name or term on it and imagine how you would feel if every time someone referred to you they said, “Fat Lady”, or “Ugly Man”. It hurts, it’s in appropriate, and it makes the person saying it look like a complete jerk.

Using the terms “retard” or “retarded” or saying it in any context is insulting and completely inappropriate. Even when not referring to Down syndrome the implication remains. If you’re using this term, stop it! Not sure how to stop?

  1. Make a habit of stopping and thinking before you speak.
  2. If you slip up and catch yourself using this term correct yourself and then apologize out loud for your wrong doing. Don’t overlook it and move on; “promising” yourself you won’t do it again. Nope!
  3. Correct others politely without apology. Not saying something still says something. Think about that.

Saying children with DS are the “happiest children you ever met” is offensive.

Saying that they are “the happiest children” implies that they don’t have feelings. That their parents have it easy. It implies that children with DS don’t ever cry nor have bad days. This is quite the opposite; remember DS doesn’t define a person. They have good and bad days and struggles and challenges like everyone else. Parenting is not easy, parenting children with Down syndrome; you guessed it, still not easy!

Appropriately, “cognitive disability” has replaced “mental retardation”

It’s Down syndrome, not Down’s syndrome. The person who named the condition did not have Down syndrome. An “apostrophe s” implies ownership or possession.

DS is not contagious, it’s a condition. You either have DS or you don’t.

Referring to someone with Down syndrome as “special” or asking if they do the same things as “normal” kids should be avoided.

We’re all special and unique. Comparing a child with DS to other “normal” kids implies they are abnormal! People with and without Down syndrome are more alike than different. Say it and repeat it! They are strong, smart, funny, and capable of great things, just as you are!

If you know someone who has a child with Down syndrome, please do not forget the siblings!

Despite being typical siblings at home who play together, share secrets, and argue, when they are out of the house they become fierce protectors of their siblings. Despite being fierce, it’s nice to have others recognize them, to spoil them a little, to see their light shine as individuals, not just the sisters or brothers to the kids who have DS.

I often find myself thinking what I would hope for if I had Down syndrome. I believe I would want to be heard, valued, respected, and accepted so I could enjoy life a little more and worry a little less!

Come to think of it isn’t that what all of us want in life?                           #morealikethandifferent #homieswithextrachromies #t21 #downsyndromeawareness

I hope that this blog was well received by you and by those who you share this with! We want to hear from you in the comments below or email us at info@firstcoastdoulas.com

Resources for our readers:

National Down syndrome Society  http://www.ndss.org/

Local to Jax., FL: Down Syndrome Association of Jacksonville https://dsaj.org/

4 Things I Wish I Knew Before I Had Kids

 

Things I Wish I Knew Before I Had Kids | Childbirth Classes Jax, FL

4 Things I Wish I Knew Before I Had Kids

I can’t tell you how many times over the last two decades that I’ve spent raising children and in my career that I’ve thought and heard: there are some things I wish I knew before I had kids. Definitely way more than I ever thought or dreamed I would.  I think most of us would agree that with experience comes at least some knowledge and insight. A mechanic knows vehicles and a doctor knows the ins and outs of medicine! As a seasoned parent, doula, and caregiver I’m often asked about my experience: what I would do in a specific situation and if I have any advice for others. So, I’ve compile a list of 4 things I wish I knew before I had kids to share with all of you and they aren’t about breast or bottlefeeding, spanking, spoiling, or sleep training.

These are things all parents and families can benefit from!

1. It’s imperative that you do you for them!

Don’t underestimate what me time can do for your entire family! Sure, in the beginning it’s tough. The first six weeks is about survival. But after you begin getting back into the swing of things at your own speed, making time for you is imperative!

Parents make sacrifices all the time for their kids and each other, but you don’t have to sacrifice all the time. You don’t have to have an answer for everything or extra set of arms to get it all done, although you give it a good go! We’re simply not designed to multitask and be great at all things. So while balancing, juggling, and living life do not forget to take care of you! Teach your children to love themselves and take time for self-care! A healthy mind, body, and spirit benefits everyone!

2. Your children are modeling for you what unconditional love is!

It’s true, let’s face it! Your finicky three year old doesn’t care if you feed them organic or fast food, they will just pick and poke anyway. Said toddler also give no cares if you leave the house to get the darn french fries without your bra or wearing two different shoes by mistake, they just want the fry fries and love you for getting them. Your little monkey will happily climb you like a tree to breastfeed while you’re squeezing in a 5 minute poop break or share the last few licks of their slobbery lollipop with you! Our children happily love us just the same!

We can learn a lot from our tiny humans. They expect nothing, they have no ideas about how it “should” be, what is “best”, and they simply love and adore us!

3. You can say no without apology or reason!

Not only can you say no because you can’t, but you can also say no when you don’t want to. You don’t have to come up with an excuse and you don’t have to have a reason. Your friend wants to drop by this evening on the way home to go through swatches for her new sofa and paint colors for her living room. You’ve had a long work week and you’re feeling tapped out. You just wanted to sit around in your underwear, have a glass of wine and watch an episode on Netflix. It’s ok to just say no. You don’t have to say why or apologize. You don’t have to feel be sorry, you can just say no, it’s healthy to say no (and yes for that matter) sometimes See #1 again!

This means strangers, friends, even family. It’s hard sometimes, but it’s healthy. This leaves more time and emotional and physical energy to say yes when you want to!

Hint: The more you practice saying no the easier it gets, the better it feels!

4. It’s normal and healthy to make mistakes.

As a mom with three adult children and one whose ten years behind her siblings I often reflect on our journey as a family. I also think back on the choices we made as parents. Boy have we made some mistakes along the way. You will too! We’ve laughed, cried, yelled, and fell upon silence. You will too… and it’s okay! In fact it’s more than ok, it’s completely “normal”. Mistakes means we’re human, mistakes let our children see we are not perfect and that is good!

Before you know it, believe it or not they will be flying the nest! Acknowledging our own mistakes, apologize, and working to learn from our mistakes will help our children not only understand that mistakes are okay, but it also models for them healthy life lessons and strategies they will take with them.

There are a few more things I wish I knew before having kids, but there’s something so freeing about not knowing all things and just winging it! I hope you find these 4 things helpful. What things do you wish you knew before having kids? We want to hear from you in the comment section below!

Here’s to happy birth and parenting!

~Elizabeth Luke, author and owner at FCDoulas