Category Archives: Parenthood

>My Special Girl

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I have a daughter with special needs.  She’s 12 years old…her name is Lizzy…here she is…
She has a rare form of Down Syndrome called Mosaicism or Mosaic Down Syndrome.  I know, I know, you weren’t aware that there are any ‘forms’ of Downs, but there is this one.  It means that only some of her cells are Trisomy-21 (which causes Downs) instead of all of them.
She’s an amazing girl.  She’s funny, she’s smart, she’s outgoing and friendly.  She loves horses and she is an amazing vaulter (a special kind of riding where they do artistic routines while riding on the back of a moving horse)  Here are some pics to help you understand…
Adults LOVE her.  Kids are mean to her.  It’s very sad.  She has one really good friend, and that’s good.  There are a couple of kids at school that will be kind of nice to her, but most just ignore her.  They don’t understand her.  She’s so high functioning that, instead of being obviously Downs, she comes off as just awkward and weird.
She bites her nails until they are too low to bite.  She also bites her lips so she gets sores that make her mouth hurt.  She has a lisp, she wears glasses and she doesn’t care much about social ‘graces’.  None of these things are great for a 12 year old girl, about to enter Middle School.
I worry about her a lot.  And, to be honest…bluntly honest…I feel ‘heavy’ for her and, selfishly, for me too.  I sometimes forget how heavy I feel….I get used to it I guess.  Until something reminds me.
Lizzy went to camp with the middle school youth group from our church this week.  She was gone for 5 days.  I missed her and worried about her a bit, but I knew she’d find an adult leader that would love on her, so I knew she’d be fine.
When I picked her up today, she walked off the bus, and my first thought was ‘she is a total mess’.  She was filthy (she had only showered once all week because the water was cold).  She looked exhausted.  She had a big scab on her chin (looked like she fell on gravel), but she said she has no idea how she got it.  I saw her trying to talk to a few different girls, and I saw them completely ignoring her.  She gathered her stuff…her backpack, duffle bag, sleeping bag…and I gathered up my ‘heaviness’ and we got into the car.
She had a great time at camp.  She, of course, met a leader who she loved and who loved her back.  She hung out with a couple of girls from school, and “they ignored me sometimes, but mostly they were nice.”
And I’m heavy again.  I hadn’t realized the lightness of the week, but I realize the weight when it returns.  Don’t get me wrong, I LOVE my Lizzy with all my heart and soul, and it’s because of that love that there is also a tension…a weight…that I live with.  I want others to see in her what I see.  I want her to “fit in”…not in an unhealthy way, but just in a happy, friendly way.  I want to teach her certain, appropriate ‘social graces’ without belittling who she is, or making her feel like I don’t think she’s good enough.  I just want to help her.
So, no big revelations…no big spiritual insights in this post today.  Just my thoughts about my lovely girl.
If you have a special needs family member or friend, tell me if you connect with this post at all. 
If you don’t, please don’t tell me…
“God loves her more than you do” or
“You should give all your worries to God” or
“It’s better if she doesn’t fit in because fitting in isn’t what’s really important” or
“Some people go through life with only one or two friends and that’s okay”. 
I know all those things already…I really do…and I believe them.  But my heart breaks for her none-the-less.
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>Parent Therapy…I Need Help!

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I spent the last few days in Georgia with some of my family.  We were celebrating the high school graduation of one of my nieces.
My middle brother and his wife have 3 kids, ages 20, 18 (the graduate) and 16.  I haven’t had the chance to spend extended time with my nieces and nephew in a few years.  One of the things that I noticed about them during this trip is that they get along SO well with each other!  To be honest, I was feeling pretty insecure about my own kids, so I said to my sister-in-law, “Please tell me that they used to fight with each other when they were my kids’ ages (14, 12, and 10).” 
She thought for a moment then said, “Actually, they didn’t.”   
‘Hmm,’ I thought.  “Okay, I don’t really mean ‘fight’.  What I really mean is more like ‘bicker’.  They did that, right?” 
“Ummm, no.  They really didn’t.  They’ve always gotten along really well.”
Now, I know what you’re thinking…she has just forgotten.  Everyone’s kids fight, or argue, or bicker, or whatever you want to label it.  Or, maybe she just doesn’t want to admit it…maybe she’s one of those moms that acts like her kids are perfect.  But I can tell you this.  I’ve known my sister-in-law for over 20 years and that is just not her personality.  She’s honest about the weaknesses of her children, along with their strengths.  She loves her children dearly (as does my brother), but neither of them are blind to the truth either. 
Then I came home to my kids…who really are awesome kids…but who do not get along nearly as well as my nieces and nephews do.  A few minutes after arriving home, I was looking through my son’s 8th grade yearbook with him, when his youngest sister asked if she could look it when we were done. 
If you had walked into the conversation at this point, you might have thought that his sister had just asked him to cut off his own arm.  He acted so ‘put out’ by the question.  I mean, how could she?  It is a ridiculous request when you think about it…that his younger sister would want to look at this book that means so much to him…that she might actually be interested in something pertaining to him…I mean, it’s ghastly, really.
Someone help me understand what is going on in his mind?  Help me, seriously.  When you have something you care about, and someone else shows interest in it, isn’t your first reaction to want to share it?  Aren’t you excited that someone else cares about it?  Don’t you want to show it off?
Why is this not true for my son with his little sister?  And, how should I handle it?  Do I force him to show it to her?  Do I try to talk to him about why he doesn’t want to show it to her?  Do I try to use reason and logic? 
Help?? Anyone???

>Teenage Attitude

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My 14 year old son is an awesome kid…I love him to death.  He also has his “teenage attitude” moments when I absolutely want to wring his neck!  One of those times happened this evening…just a few minutes ago, actually….and I’m still fuming just a bit.
Since he only has one more week of school, I decided to go online and check his grades.  He has always been a good student with good grades, so I had no significant worries about what I might find.  What I wasn’t expecting was that he has 8 missing assignments.  Eight.  Not just one “oops I forgot” moment.  Eight missing assignments.  That’s not an accident…that’s pure irresponsibility. 
Of course, this little discovery spawned a “conversation” in our household this evening about responsibility, lying, etc…  And here is what my 14 year old son said to me…”I can handle my school stuff on my own.”
If I hadn’t been so frustrated with him, I would have laughed.  “Umm…really?  Really?  Did you fall on your head today?  You have 8 missing assignments!  That’s not how I define someone who can handle his schoolwork on his own!” 
I sent him off to work on his assignments and thought to myself (and I’ll be honest here), ‘teenagers are just stupid…MY teenager is stupid.  He actually believes that we should just step back and let him do what he wants to do (or not do, as the case may be).   He actually believes that, at the ripe old age of 14, he’s got it all taken care of.  But wait until he needs something…a ride, some money, dinner…will I be so unnecessary then?’
Then suddenly I heard a whisper in my soul.  I sensed Jesus saying, with a bit of a friendly smirk on His face (and, yes, I do believe that Jesus smirks!) “Isn’t this, Kim, the way you so often act toward me?  Don’t you often act like a stupid teenager who thinks that she can handle life on her own?  Don’t you often believe that you’ve got it all taken care of?  Until you need something, that is.”
Ouch…it’s true.  Maybe, like my son who thinks he’s older than he actually is, I think I’m more mature than I actually am.  If I’m honest, I walk my faith more often like a stupid teenager than a mature adult. 
But, as always, there is good news.  I still love my son more than life itself…I would die for that stupid teenager!  And Jesus loves me more than life itself…so much so that he already died.