Sunday, April 07, 2013

Do you have a question about my sister with Down syndrome?

Updated to add Questions/Answers #12/#13

I had started off writing this as one long blog post, but have now divided it into two.  This one is first.  I will publish the second one in the next couple of days. I'm going to start with the same intro, though.

So.  It's not a secret that I'm licensed to foster a little one and have been researching and learning so much about how to be the best foster mom I can be.  That means I now have friends that are fostering, friends that are adopting domestically, and friends that are adopting internationally.  Some of these friends are people I've never met, but we keep up with each other via Facebook and blogs. and I've been blessed to meet several by dropping meals off when needed.

I read this post, by Missy at It's Almost Naptime, a blogger I have been following for years, more years than I've been in the foster care process.  We've never met.  But y'all.  She's real.

I read this post a long time ago and have been mulling it over for awhile, because I resonate with it in a completely different way than the topic she is writing from.  I can see where she's coming from.  But, I haven't lived it yet.

So, please forgive me if this post comes about a little jumbled.  Because, I'm going to talk about being a sister of a woman with a disability.  (I've written a separate blog post about fostering and adoption.  I'll post that one in the next couple of days.)  Since both of these topics are close to my heart, and since so many of you that read this are dear to me, I'm going to pretend that we're each holding a cup of our favorite drink, with our shoes kicked off and our feet tucked up underneath us while chatting in my living room.  Because that's exactly how I'm sitting right now...join me!

Missy's main point...that I that before you ask deeply personal questions, ask if now is a good time to ask a question.  Whenever anyone has said, "Hey, can I ask you a question?"  I immediately knew it was about Angela.  I'm totally cool with this and love talking with others about my experiences, our family and my perspective of having a sister with Down syndrome.  I also know, when they start off with that question, that they sincerely want to know.  This helps me mentally shift gears in our conversation and help to make it the serious and deep conversation it's about to become.  So, just ask ahead of time if you can ask a question.  It's cool!

Some Background:
My sister, Angela, is 3 1/2 years older than me.  She was born with Down syndrome.  This scientifically and medically means she has an extra copy of chromosome 21.  Without getting into too many details, I have an XX (because I'm female) on every chromosome of my DNA.  Angela has an extra X on every 21st chromosome.  What does all this mean or affect?  It means everything is a little slower.  Her thought process.  Her metabolism.  Her actions.  Her reactions.  Her mental capacity.  Her fine motor skills.  Her gross motor skills.  Everything takes a little bit longer to develop than it did for me, a child born without Down syndrome.  Once it's developed, everything is slower than it would be for a person not born with Down syndrome.

I have had many friends and acquaintances ask me questions about my sister.  I have NEVER been offended by questions.  I'm going to amend that statement just slightly.  Ever since I have known enough (and been mature enough to understand curiosity), I have NEVER been offended by questions.

As a kid, I did way better with adults than I did with my peers.  My friends would ask questions and I didn't know how to answer them, so I might have huffed off and acted offended.  (If you're an old-school friend, and I did that, please hear, an oh, so heartfelt, "I'm sorry!")

Friends, I will NEVER BE OFFENDED if you are asking a question about Angela, or Down syndrome in general, from an honest and sincere heart.  Questions happen more often when in a new situation.  The longer I know people, the less often questions are asked.  Sometimes, this is because they already know.  They've asked. :)  Sometimes, this is because they think we've been friends long enough that they should already know, so they're too embarrassed to ask.  Ask!  I consider it a blessing to talk about my experiences with Angela and to help you understand.

Wonderful questions I've answered over the years:
1. Q: What is Down syndrome?  What does that mean?
    A: I think I answered this in the background, but if you're still curious, and want more specifics, this is a good article to read.

2.  Q: Are you older?
     A: Nope.  She's 3 1/2 years older than I am.  Because I'm a full foot taller (very typical for people with Down syndrome to be on the shorter side), many people assume I'm older.  But I'm the baby. ;)

3.  Q: How did your parents find out that Angela had Down syndrome?
     A: The doctor told Mom, in the hospital room, after Angela was born.  Maybe the next day?  Dad wasn't there.  (On a personal note, that has always surprised me.  The doctor couldn't wait until the first-time parents were together!? to share life changing news?)

4. Q: How old was your mom when she had Angela?
    A:  Mom was 28 when she had A and 31 when she had me.  Yep, our family doesn't abide by the 'norms'.  Angela was not a "late in life" pregnancy.

5.  The previous question is usually followed with this question.
    Q: Is it genetic?
    (Some background) This is usually a two-part question.  1.  People are unsure and wondering if Down syndrome is genetic at all.  2.  They're wondering if because Angela was not a late-in-life pregnancy, if that means Angela's particular birth with Down syndrome is something that runs in our family.
     A:  Part-one Answer: Down syndrome CAN be genetic, but that is VERY rare.  In our community of families with a child with a disability, I know of only ONE that is a genetic disability.  In this particular situation, the female is the carrier.  This family has two children without disabilities and one child with a disability.  One of the children without a disability is female, therefore a carrier.  Meaning her children are more likely to have Down syndrome.  As I said before, this is VERY rare.  (We know A LOT of families with children with a disability.  We know of only ONE that has a disability that is genetic.  (By genetic here, I mean, runs in the family, like curly hair or blue eyes. Down syndrome is a part of the genes, therefore genetic.  I'm sorry if this is confusing.  It's the best way I know how to describe it!)
         Part-two Answer: Down syndrome does not run in our family.  Angela's birth had nothing to do with Mom or Dad being carriers.  Actually, it had nothing to do with Mom or Dad at all.  They conceived a child, and God knit her together in her mother's womb (Psalm 139: 13) just the way she is.

6.  Q:  What is the appropriate terminology?  I know retard is not correct, but disability, handicapped?  What words are offensive/not offensive?
     A:  I get this one a LOT!  You're not alone in wondering!  Terminology changes and words seem to be something, across topics, that causes bristling and hurt feelings.  Retard or retardation is not appropriate.  It is offensive.  Please don't call someone with a disability a "retard."  Please don't call someone WITHOUT a disability a "retard".  The reason for this is that, in that moment, you are using the word "retard" as an insult.  And that, in and of itself, is offensive to everyone with a disability and every family member of someone with a disability.  The best thing to do is simply remove the word "retard" or "retarded" from our culture's vocabulary.  The appropriate terminology is also PEOPLE FIRST language.   "My sister has a disability." is much better than "My disabled sister".  Blind man, four eyes, metal mouth....all of these are not appropriate.  A man that is blind.  A person that wears glasses.  A child with braces.  A person with a mental (or physical) disability.  Does that make sense?  Mentally handicapped isn't offensive, necessarily, but mental disability is better.

7.  Q: Does your sister have Downs?
     A: This is a fairly technical one.  I'm starting my answer off with that disclaimer.  :) The actual terminology is still PEOPLE FIRST.  Dr. Langdon Down is the man that first made important observations about Down syndrome.  While he did not discover the copy on the 21st chromosome, and it wasn't actually discovered until 1959, almost 100 years later, the syndrome is still named after him.  The D in Down should be capitalized.  The s in syndrome should be lower cased.  We are giving credit to the PERSON, not the syndrome.  Oh, and they are two separate words.  Downs is not a part of it at all.  Down.  syndrome.

8.  Q: What was it like growing up with a sister with Down syndrome?
     A:  Sometimes we fought.  Sometimes we got along.  Sometimes our parents had to draw a line in the backseat so we didn't cross it and each had our "own" space.  Sometimes we giggled and played together and took naps with our heads in each other's laps.  Does this sound a lot like your childhood?  :)  We were sisters.  We fought.  We played.  We were just kids.  I'm not trying to glamorize it.  There were parts of it that were very hard.  Angela is stub.born.  She gives a new meaning to the word.  She pushed every limit my parents ever set...and then some.  Strong willed?  She defines it.  Because of that, I was a people-pleaser to the extreme.  Still am. That has worried my parents off and on.
Fun anecdote:  We had a wooden spoon with our initials and, as a child, I thought it was for both of us.  And it was, technically.  But I think it might have been used on me twice.  Angela = strong willed. :)

9.  Q:  Are you worried that you'll have a child with a disability?
     A: Well, since I'm not married, I don't dwell on it.  Yes, it is a concern.  Not because it's genetic (because it isn't, as I said earlier).  But because of my awareness.   Yes, I would have an amniocentesis when it was safe to do so.  No, I would not have an abortion.  (I think most of my regular blog readers would know that already.  But I want to be very clear here, so I'm stating it anyway.)  The reason for an amnio is to know ahead of time.  I, and my (currently hypothetical) husband, would be able to mentally and emotionally prepare for what is ahead.

10.  Q: If something happens to your parents, what happens to Angela?
     A:  This answer has also changed with maturity.  At one point, in high school, I made it very clear to my parents that I was not willing to take on that responsibility.  I didn't mean just right then.  I meant in the future, too.  We re-visited the conversation when I was in college, and I made it equally clear that she would become no one's responsibility but mine.  My words were almost exactly, "She is MY sister and family takes care of family."  (If you are a sibling of a person with a disability and have a different answer than I do, I am NOT judging you.  This needs to be every person's individual decision, and every family needs to find what works for every person in their family.)

11.  Q:  What's something you think about now, in regards to Angela and her disability?
       A:  In all honesty, a lot of what I think about now, has more to do with my parents than with Angela.  Angela is my only sibling.  My parents are getting older.  (They're still 100% independent.  They both still work full time.  They love working in their yard.  I can almost SEE my mother rolling her eyes at my phrase "getting older" ;)  "Hi, Mom!")  My thought is not for the current, but for the future.  I saw my mom and my aunt work together to take care of my grandma until she passed away.  I see my dad and my uncle working together now to take care of my grandpa.  I feel very alone when I think of taking care of my parents and having to make all the decisions by myself.  (I've said that to a cousin or two and they promise to help.  And I know they will.  But bottom line, the decisions and care will be my responsibility.)

12. Q: Does Angela have a job?
      A: Yes, she works at Academy about once every two weeks and Kohl's about one shift every couple of months.  She's worked at both for 15-20 years.  She also delivers meals with Meals on Wheels three mornings a week.

13.  Q: Are there programs to help out with emotional health or continued education/enrichment geared for her?
       A: Well, there are state programs that provide job assistance and training.  They help connect people with disabilities with companies.  Then they help provide the training to learn the position.  It can be a roller coaster.  A lot of people think of the "F" jobs for people with disabilities.  The "F" jobs are: food, folding, flowers, and filth.  Food doesn't work well, because many of them struggle with obesity due to low self-control and lack of activity.  Folding is monotonous.  There are only so many flower shops.  Filth, meaning sweeping or emptying or cleaning anything, etc, means an employee has to be detailed.  This can be a struggle at times.  The hours for these types of jobs are weird, too.  Most people with a disability do not drive, so they're dependent on someone else to get them to their place of employment.
     This same state program can provide transportation.  They can do some food prep training (in this instance, I'm talking about personal food prep).  They can do some tutoring.  There is some counseling.  However, the high turnover are what you would expect in many state agencies, so the consistency isn't great, and the options that "should" be offered, aren't always available.

Okay, that's most of the questions I can think of.  If you are a sibling of someone with a disability and think I've forgotten something, please let me know!  If you're a friend (or stranger) and have more questions, please let me know!  I'm more than willing to edit this post and update!

Pastor Gregg, my pastor in Houston, had a FABULOUS way of explaining something to parents regarding consequences.  He said there should NEVER be consequences when a child is curious or ignorant.  Consequences should be for disobedience and disrespect.  I think that same philosophy carries over to a LOT of life.  If you ask me a question in ignorance or curiosity, I will NEVER be offended.  If someone asks me a question, intending disrespect toward me, my sister or anyone with a disability, then I will be.  (I know that's not anyone reading this blog.  I'm just articulating the difference.)


  1. Hey girl! I have a question for you! Does Angela have a job? And, when it comes to the taking care of her if that time comes, are there programs to help out like with any kind of emotional health for her (and you) or continued education/enrichment that is geared toward understanding the specific ways a person with Down syndrome learns? Love you!!

  2. Hey Meagan! Great questions, and ones I have been asked many times! Thanks for the reminder! I'll update the post!

  3. Fantastic post Alyssa!!! Thank you so much for sharing!!