>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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18 responses »

  1. When news broke late last week that behemoth education company Pearson had bungled the scoring of standardized tests used for admissions to gifted education programs in New York City , it united Gotham’s quarreling education community — everyone was outraged. Parents, teachers and city officials all had good reason to be, as the scoring errors would have denied admission to 2,700 students who qualified. But the incident also highlighted the arbitrary nature of how we decide which students are so superior academically that they are essentially funneled into an elite group of schools with a specialized, advanced curriculum.

  2. Here is what I want to share: I do NOT have a special needs child, and I still carry that heaviness. I have a daughter who is 10 and has no “special needs” but she still has difficulties making friends, and this is getting worse the older she gets. At our church, she is the ONLY 5th grade girl. The two 4th grade girls go to school together and live near each other, so my daughter is the odd man out there, and the only 6th grade girl, who is tall, has not only physically matured (and my daughter is tiny), but has also gone on to middle school, whereas my daughter is still considered elementary. AND, we homeschool. We know 2 other 5th grade girls who are good friends to her, but they each go to separate schools and have their own sports and activities, separate from her, so getting them together is difficult. What I want to share is that the rest of us don’t have to have special needs children in order to relate to your heaviness … we feel it, too, for our own reasons. May God give us all His grace to get through this parenting journey!

  3. I found your piece on your beautiful daughter. My son also has Mosaic Down Syndrome. He is currently 18 months and up on all his milestones, BUT I am already watching and worrying how he is with other kids etc… When I found out my son had Mosaic Down Syndrome my first thought and worry is, “he is between two worlds”. We have a lot of Down Syndrome groups and organizations in my state, BUT when I go to them they look at Porter with the look of, “he doesn’t have down syndrome, why is he here” I feel I have to constantly explain to them the Mosaic part, many times the parents will give me one of those “jealous” looks or, “you don’t understand”. I’ve stopped going to the monthly singing group because of it. When he is around non diagnosed children I most of the time don’t feel the need to explain, but as speech is coming I worry that I will have to start doing it. I fear when he acts out that if he looked DS I would get the understanding, whereas I will just get, “the look”. Many complain their children with MDS suffer from depression because the kids aren’t as nice to them as they would be to a child with DS that was obvious. Your worries confirmed my worries that this sweet boy is going to be stuck between two worlds and not feel the acceptance every child desires.

  4. >Idelette…thank you dear sister. I love you.Kelley…I do see things changing as Lizzy gets older. She is "easier" to deal with day-to-day because a lot of the issues she had when she's younger have sort of 'leveled-out' as she gets older. BUT, the older she gets, the more obvious it is that there is something different about her. And, the more she notices that people see her as different. I do love that she has vaulting as an outlet. It is her special thing…I won't let her little sister do it…and she feels really confident and successful at it. Take Emma to climb as much as you can!!!Sonya…thank you. So sorry to hear about your brother…what a tragedy! I'm glad that you have enough memories of him to be able to remember the good stuff!! How's sweet Anderson?

  5. >Kim, love this post, love your honesty. I had a special needs brother (unfortunately killed by a drunk driver when we were kids) and remember having all these same feelings about him as his protective little sister. I am now remembering fondly some of his mannerisms 🙂

  6. >You have your Lizzy, I have my Emma. Emma is 7 and has no hearing in one ear and a mild hearing loss in the other, so uses a hearing aid. But since she was diagnosed late (once we adopted her and got her home), she has speech issues. This year we learned she also has some learning disabilities, so she functions under grade-level. But she is lovely – ever cheerful, kind to others and fearless. She is a great rock climber, mastering the 3-story rock wall at our gym and also great at yoga – both more individual sports. Like your Lizzy, she always befriends grown ups who accept her and see her goodness and sweetness. Right now she does have a few friends on the playground. But I worry – because one of her challenges is 'higher thinking' and that means she misses much of the conversations that move beyond concrete to abstract matters. As she ages, this could create distance with friends if her cognitive functioning does not accelerate soon. Teachers say it could happen, but we don't know when – or to what degree. So I know the heaviness – wondering what life holds for her and what she will have to contend with as she grows.I adore her – her happiness, gratefulness, fearlessness and sweetness. I want her to be able to fully engage in life, and I feel heavy when I worry that such engagement might be compromised or others might try and crush her spirit. I just try to keep putting her in places where she is strong – like climbing and yoga, to build on the goodness. Because she has so much challenge in learning – she works hard, but I want her to have a place that is natural and joyful, too. When I watch her climb, my heaviness lifts. I love those moments. Maybe you feel that when Lizzy is vaulting, too, moments when these girls take our breath away!I know the loveliness of Lizzy and Emma, the heaviness, moments of levity and all the hopes we carry for their future…

  7. >Kim, this is absolutely beautiful … I love that the post is not neatly wrapped up; I love that you are simply sharing your Lizzy. She sounds so lovely. Thank you for this beautiful piece … You moved me deeply this morning. xoxo

  8. >Susan…oh to be oblivious to the judgment of others! That's one thing that's so great about kids…they just are who they are and they don't care who sees it! I wish I could be more like that, too, but right now I'm just not! Blessings on you as you walk through life with your sweet boy.

  9. >Thank you for your post. You put into words what I feel often. While I am so grateful for the victories each day even when they are so small sometimes, that heaviness follows me and pops up like an unwanted shadow. Our son is 6 and has autism and at this point is oblivious to "social graces" or looks or comments which I've realized is a blessing in disguise – sometimes I just wish I could be oblivious. Thanks again for sharing your heart.

  10. >I'm so very blessed by all of your posts. If we don't share our difficult thoughts and feelings with each other, then we all just sit around believing that we are alone. But we are not alone!!! Anonymous #1…thanks for starting the conversation…I want to say that I wouldn't have it any other way as well, but honestly, some days I would. I mean, not that I wouldn't have my Lizzy, but that she wouldn't have all this extra stuff to deal with in life. Ya know??Anonymous #2…even though it's heavy, it's going to be okay…not EASY, but okay. I don't say that flippantly, trust me. There is a completely different "feel" about parenting when your baby is struggling…it's heart-breaking, I know. My Lizzy had open heart surgery at 8 1/2 months as well…so scary. We're all just trying to figure out how to best love our kiddos…I would love to walk with you through this. If you want to, email me at kim@gobruces.com.Tina girl!!! Thanks for the words. I know there are kids with no special needs who deal with the same social issues…it's so hard. Why can't kids just be nice to each other?Sweet Kim (simply amazed), my new cyber-friend! Thank you for sharing your struggles and your heart! Oh how people can judge without knowing the whole story. One thing I've seen, though, in Lizzy is that she is an example to others of someone who doesn't judge. She will be friends with anyone! It's amazing how a kid with "special needs" is so much more wise in some ways than so many judgmental and assuming adults! God uses her as an example to me in that way.Mammarousu, you are so right that we all share this heaviness for our kids to some degree. I have a bit of it with my other 2 kids at times, as well. But your comment "The opportunity for heartbreak is that much greater, both for him and for me" sums it up PERFECTLY! So true. I have to remind myself that the joy surrounding successes is that much greater as well!!Marlette…so much of your comment resonated with me, but when you said, "I sometimes wish he could wear a sign or a shirt that says "I'm autistic," so people wouldn't think he is just strange or ill-behaved" I wanted to shout HALLELUJAH!!! Sometimes I've thought "if she just had full-blown Downs people would be able to see that there is something going on, and they would be more kind to her." Oh, the guilt for EVER even thinking that!!! But that's the truth, and (like I said before) if we don't share our hearts with each other, then we'll all just sit around thinking that we are alone in these thoughts, which doesn't do anyone any good. So, thank you for sharing your honest thoughts.

  11. >My 18-year-old son is autistic, and I feel the heaviness all the time. He finished high school last week, but we didn't get a graduation ceremony, pictures and party. He didn't want to face the anxiety the crowd produced. He is emotionally and physically needy – still comes into the bathroom while I shower, like a toddler. I think about his needs every waking moment of every day and still am unable to always meet them. I sometimes wish he could wear a sign or a shirt that says "I'm autistic," so people wouldn't think he is just strange or ill-behaved.There ARE sweet victories and moments of peace and "normalcy." They are fleeting, though. Another thing people should not say: "God must have thought you were special (or strong), so he blessed you with this special gift." I don't feel special or strong; I feel tired and impotent and scared.God is good and always provides, but it's not how we thought it would be.

  12. >Thank you for sharing this. I understand this heaviness so well. I think all mothers experience some of it, just by nature of being mothers. I certainly did with my older children. But now that I have a child with a hearing loss (mild, but he needs hearing aids), the weight of motherhood is different. The opportunity for heartbreak is that much greater, both for him and for me. There are just so many ways that adults and other children can hurt or take advantage of him. My only grace is taking each day as it comes, moment by moment and recognizing that out of this pain and hardship, something beautiful will be born.

  13. >I also have a daughter who is dyslexic. We have learned it is most like from me and my side of the family. I never relised it as a heavyness but that is exactally what it is. Her good friends know and they help her with words with a special code they have. This was set up by her very seet Sunday school teacher. It didn't really hit me until soccer last year when apparantly she struggled with naming something and someone back handly said"what are you dyslexic?" She came home devestated thinking a friend had told. All my kids also react to artifical colors and sylicates(?) We follow something called the fiengold diet. My 9 yr old son reacts the worse with oppositional behavior. To the outside world he is immature and not disaplined. To us he has ate something he shouldn't have. Not to say that this is the reason for all his wrong behavior, but the is a clear difference to us. Like if he passes gas and cracks up with fits of giggles seeing his great grandmother almost faint …that's wrong behavior. When he has to leave the table and he is still giggling is how we know. If it is due to food then he will become defient, make excues and then storm through the halla nd stomp up the stairs. He is also prone to migranes when he has not followed the diet for him.It seems the older they get the heavier it feels. When they are young they are just learning to read and it doesn't show. Behavior is considered a youngster exploring his boundries. Now the rudeness, opinions and judgements of others come into play.

  14. >Oh Kim…thanks for being willing to be transparent about your life so that people can partake in the dialogue. When my little brother was younger he seems to have a similar effect on kids his age. They just thought he was strange. I'd see him stand on the sidelines at basketball games and the school bus and it truly broke my heart. And he doesn't even have Downs Syndrome. It's just hard to watch the people you love be looked over. *hugs* Do you think joining a support group of parents in a similar situation would help? Love ya,xoxoTeen

  15. >I also have a child (baby) with partial Down's. He is 9months old. He just had open heart surgery. Even though is still little I know the heaviness you speak about. I worry all the time. He is g-tube fed and we are trying to teach to eat by mouth. I worry about his development..I worry that kids will make fun of him and that he won't know true friendship. I know that he was sent to us for a reason but I feel guilty most of the time. Thanks for your honesty.

  16. >Yes, I have a daughter that is a severe dyslexic. She is is going into high school next year and she is considered to be at a 5th grade level. She has many friends but she doesn't go over there house and she doesn't invite them over. I'm suppose to be mom and friend. Thank goodness for her older sister that comes home from college in the summer. I know the heaviness you talk about but I wouldn't have it any other way.

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