New to the Team, Here’s What I Want You to Know about Down Syndrome

by GfG on October 13, 2015 · 2 comments

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Since Jubilee is only ten weeks old, I’m new to the Down syndrome community and new to special needs parenting. Sure, I’ve worked with children with special needs of all kinds for over twenty-five years, but this side of the zone is much different.  And well.. October is Down syndrome awareness month.  I have wanted to share a post, but haven’t known what I wanted to say.

So, I decided to tackle the concerns I most hear, so far.

DS Awareness 2015

As a new girl on the team, here is what I want you to know about Down syndrome because it matters to Jubilee, me, and many others:

1.  Down syndrome does not mean that the person must live with their parents for their entire life.

This is probably a top concern for those who aren’t us.  Not that long ago, sadly, people with DS were sent off to institutions because they were considered too much of a burden for the family.  Seperated from their families and left to linger in places that didn’t usually cultivate the best in them.  That time is gone in the USA and I’m grateful.  Yet, the mindset of a person with DS being a burden their whole life lingers.

Here’s the deal, part one: not everyone with DS lives with their parents as adults.  Some live on their own.  Some live in group homes.  Some live with friends.  It varies by ability and access.  There are many programs that can help adults with DS live independently and these programs along with, for the most part, an improved mindset in our culture has literally changed the lives and fates of those with DS.

Here’s the deal, part two: signing up to be a parent doesn’t mean you sign up for eighteen to twenty years.  It means you decide to love on, care for, and provide for another human being as long as they need you to do so.  And that may mean eighteen years.  It may mean eighty.  I will admit that I struggled with this truth a few years ago.  Fearing what it would look like to have a child home forever.  And I’m grateful God worked on my heart.

Some parents find themselves caring for a child that has been in some kind of accident or battled some kind of disease for the rest of the child’s life.  Should they scream foul?  Should they ask to be tagged out of the parenting game?

Nope.

Parenting is not part time, in the short or long term.

Could it be difficult or costly? Maybe.  Maybe not. It will be a honor to have Jubilee in my home as long as she wants and needs to be here.  Truly.

2.  Down syndrome does not mean that the person is always happy. 

This is a really really common misconception.  And unintentionally it implies that people with Down syndrome don’t feel the typical range of emotions because they are not “normal”.  Not true.  They feel, just like you and I do.  They get mad, sad, angry, frustrated, confused, scared, happy and everything in between. Please don’t perpetuate the belief that they are only happy.  They aren’t puppies.

3.  Down syndrome does not mean a person is “cute” all their life. 

The word cute is a bit tricky.  It’s a positive word, in general.  Yet, calling an adult cute is condescending, even if unintentionally so. And it implies a child-likeness.  Adults with DS want to be treated like adults just like everyone else does.  And they deserve to be treated so.  Don’t think of them as cute.

4. Down syndrome does not mean a person is unintelligent.

There is a spectrum of mental abilities and people with Down syndrome fall all along it.  While it may take longer for certain skills, everyone with DS learns. And they learn all kinds of things, just like everyone else.  Please know that I expect people to talk to and treat Jubilee as an intelligent baby, then girl, then woman.  She may not be a rocket scientist, but I don’t know any of those anyway.  So while she won’t reach that level, not many do.

5.  Down syndrome does not mean that my baby girl is less of a gift. 

I am still seeking the Lord to provide strength when I see the look from people when I tell them Jubilee has Down syndrome.  Many people then  immediately either apologize or look incredibly sad (this is especially true if the person is over sixty years old).  And I want to punch them (sorry, but it’s true).  The disappointment (whether for me, for her, or  just in general) is clear and it breaks my heart.  I’m so so glad Jubilee can’t see that look.

Imagine if she could.  Imagine if my precious daughter saw the look of disappointment in her design.

Sigh.

Jubilee is just as much of a gift as my six non-Down syndrome children are.  Just as much of a gift as your children are.  Just as much of a gift as you were to your grateful mama.

I’m sure that I will want to share more for Down Syndrome Awareness Month in the future, but for now please take these five lessons from the new girl on this wonderful and amazing block.

And share them with your friends and family.  That would really help me and Jubilee and everyone on this team. And that’s what awareness is all about.

Are any of these new to you?

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{ 2 comments… read them below or add one }

Heather October 13, 2015 at 11:47 pm

Many of these can relate directly to any disability. I have wanted to throat punch many people when James has received “the look” or when he gets left out by friends or other parents, etc… and just wait till you get the whole “you need to let go a bit mom” speech from people who might be professionals in their field of special needs but honestly have NO clue what it’s like to be the parent and not just the therapist for one hour (and I’ve been that therapist so I know they mean well but…) No doubt they have good intentions but they will never really understand. Until you are the parent of a special needs child you never really get it. It’s not easy. At all. But I wouldn’t change it. Honestly. For James I would love it to be easier but man he’s an amazing kid. I love that God is working this out for you, it’s a hard, hard road but so worth it and you are amazing, friend.

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Heather October 13, 2015 at 11:51 pm

I guess I should add…sometimes we as parents are letting go in stages but it’s not always seen, we alone know our child’s anxieties, fears etc.. But stages is how we have to work now, smoother transitions are so important with special needs kids. They will get to their goals just in different ways and at different speeds. Jubilee is one lucky and beautiful girl :-)

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