Friday, August 03, 2012

Special Needs Spotlight: William and Mary




Hello!  My name is Kimberly.  I’m married to David, my voice of reason.  We have 3 children William, 8, Ruth, 6 and Mary, 4.  And a dog named Jefferson.  William and Mary, both have Down syndrome.  While it can and does happen it isn’t very common to have two children with Down syndrome with no family history of it.  More than one doctor has suggested we play the lottery.  I like think we’ve already won.  I spend my days chasing, herding, feeding, wiping, calming, hugging, laughing, and playing with our children at home.  In other words I’m pretty much making things up as I go.

***************

Miggy:  Kimberly, you are only my second spotlight of a child with Down syndrome, but you have not one, but two remarkable kiddos affected by Down’s.  So lets start with your son William, the oldest, do you remember the day you found out William would be born with Down syndrome?  Can you compare what you felt then with how you feel now? 

Kimberly:  We did not know that William had Down syndrome until he was born.  And even then it was a little confusing.  At the hospital there was a Respiratory Therapist there, who happened to have a 12 year-old son with Down syndrome, and he knew right away.  In the days that followed the doctors would come to examine him and would list off all these things that would/could be wrong with them.  Then, after looking him over, he didn’t have much wrong.  They kept saying, “he could have Down syndrome,” and yet they couldn’t seem give us definitive answers.  It was, to say the least, emotionally draining.  Finally, a week later we received his test results back.  We were devastated. Which sounds harsh but I think it was also necessary for our healing.  I cried.  A lot.  All we could think about is all the things he wouldn’t be able to do.  Now, 8 years later, my perspective has changed completely.  I’m pretty sure he’s a rock star.  He constantly amazes me with what he learns and retains. He has some wicked monkey bar skills and can put people to shame with his basketball abilities.  It’s not always easy and it’s hard not to recognize the gap between him and his peers is growing and yet I know I can’t put limitations on him, or any of my children, for that matter.


Miggy:  Then 4 years later, you have another child, Mary, born with Down syndrome, not to mention another daughter in between!  In one sense I would imagine it to be overwhelming to know you now have 2 children with special needs, but in another sense I would think it's just another blessed, amazing soul who gets to be a part of your family and you've already been-there-done-that.  So tell me, how did you feel the second time around?       

Kimberly:  Again with Mary we did not have a pre-natal diagnosis.  The moment she was born David and I both knew.  We looked at each other and had the thought, “really? Oh well, here we go again.”  So many of the fears we faced with William were not there, having lived through it once before.  Not long after she was born I began having complications that very much overshadowed her having Down syndrome.  In fact she had to be released from the hospital before I could be.  After that storm passed it was easy to settle into this new normal, one that I couldn’t have ever imagined belonging to me.  She was so much easier than he was.  I joke that William is the guinea pig and we get to do everything right with Mary.



Miggy:  One thing I know I worry about is not letting our daughters special needs over-shadow our other daughter.  Is this a big concern for your middle daughter?  If so, how do you manage this?

Kimberly:  This is such a good question!  I am so very much aware of the fact that she deals with so much more than I had to when I was her age.  And because of our family dynamic she is very different from her peers and friends.  Not only that but she’ll have many things placed on her the older she gets.  It’s over whelming for me just to think about it.   As she’s gotten older she has become more and more aware that her brother and sister are different.  Although in our house she’s the odd man out.  I try to be honest with her when she asks questions and give her age appropriate answers.  We are very careful not to refer to William and Mary as being special because I don’t want her to think that she, and her needs for that matter, are not special.  In my opinion she is just as special as they are.  Having children with Down syndrome we’ve learned to celebrate all the little things and we do the same things with her.  Something as small as when she started coloring in the lines we made a huge deal out of it.  I also try to give her one-on-one time so she doesn’t feel left out.  For now I’m just grateful that the biggest thing she’s miffed about is that she doesn’t get to ride the bus to school like they have.


Miggy:  Explain how your children's special needs affect your day-to-day life?  

Kimberly:  One of our biggest issues with both of them has been hearing.  William has had a total of 6 sets of ear tubes and Mary 2.  They have both been diagnosed with mild to moderate hearing loss which requires hearing aids. Keeping those, plus their glasses, on their person is no easy task. When we’re home I’ll often skip one or the other since I would have to follow them around every waking moment to make sure they don’t get ripped out and torn apart. They’ve also been found under couches, thrown down stairs, in my purse.  I think I even found a hearing aid in a shoe once.
Along the lines of hearing loss is communication. That is probably our greatest struggle on a day-to-day basis. They both are verbal but very hard to understand, although Mary has more sounds and is much easier to understand than her brother.  They get just as frustrated as I do when they’re trying to tell me something and I can’t figure out what they need or want. It requires lots of trial and error and lots of patience from them and me.

Those with Down syndrome are prone to wander and we have lost William more than once because of his wanderings.  Now that he’s older he’s included Mary in his wanderings, too.  It can be so scary at times.  I truly believe that it is more that they are extremely curious and extremely bent on doing their own thing than it being aimless wandering.  We have to constantly be on our toes and constantly know where they are. Since Mary can’t yet unlock and open doors it is a little easier with her, sometimes. William, though, has been known to get up and leave the house before 7.   Also with William, I have to be one step ahead of him and see what he is about to do so I can either stop him or redirect him.  When we’re out in public he has gotten a lot better and knows to stay were we can see him. Not that he always does it but I know he knows it.  Mary is just starting to test and see how far she can push us.
Needless to say by the end of the day I’m exhausted!

                                                            

Miggy:  What are the biggest worries you face for your kiddos?   

Kimberly:  I try not to worry too much, or I think I’d go crazy!  Having said that we do worry about what health challenges they’ll face as they grow.  When we look at them we don’t see Down syndrome, we see William and Mary.  We hope that they will always have people in their lives, as they do now, that see them that way.  We hope that they can contribute to the world around him, no matter how small a way.


Miggy:  Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situations? 

Kimberly:  I usually feel like we’re a traveling circus.  So I think just about everything they do is hilarious.  I have never been one to embarrass easily. And since becoming their mother it’s very rare that I am embarrassed.  This came in handy a couple of months ago when the school called to tell me that William wasn’t wearing any undies and so I trucked it there to give him some.  I feel like such a super mom when he does stuff like that for his teachers, aides, and various school staff, to witness.


Miggy:  What is the biggest lesson you’ve learned since becoming a special needs mom?   

Kimberly:  Often people say things to me like, “I don’t know how you do it!” There are many days that I don’t know how I do it either.  I just try to do what needs to be done. When I was first pregnant with William I could have never imagined living through what I have.  We don’t know how strong we are until we’re faced with these kinds of life changing experiences.  I’ve learned that I don’t have to look beyond my children to see some amazing things.  They’re constantly teaching me about patience, forgiveness and that laughter really is the best medicine.

***************

Hi friends!  I know I said I was taking a blogging break, and I am, but I had this amazing spotlight already lined up.  I want to thank Kimberly for sharing her amazing family with us.  I particularly love what she said at the end about how she doesn't know how she does it somedays either, but "we don't know how strong we are until we're faced with these kinds of life changing experiences."  So true.  SO SO true.  I know we can all related on one level or another.  Thanks again Kimberly!  

I'm going to be taking a little break from blogging (well, mostly) the next few weeks while I soak up these last days with my oldest at home.  But PLEASE if you'd like to be spotlighted email me at thislittlemiggy at gmail dot com.  Sometimes people send me contact info for other people who would make a great spotlight, but I just don't have the time to chase 'em down anymore!  So please, if you know someone who would make a great spotlight, please have them email me directly.  Thanks you guys.  

Have a great weekend!
Miggy

4 comments:

  1. I am the sister/aunt to all of the above awesomeness. She truly is Superwoman!

    ReplyDelete
  2. A very beautiful family. You are all so lucky to have each other.

    ReplyDelete
  3. What a sweet family!! :)

    ReplyDelete
  4. beautiful family. beautiful story. beautiful perspective. thank you for highlighting this family and their journey.

    ReplyDelete