April 26, 2011


I like to think I know what makes Alex tick. Most of the time, I do, she is quite transparent and when something bothers her it is usually easy to tell. Her symptoms include slamming the door and listening to music. Most of the time these are reactions to not getting what she wants (food) or having her feelings hurt.

Alex is quite sensitive not only for herself, but also her family. She has an intuition about things I never had, when I am upset Alex becomes upset. When John and I have a disagreement she can feel the tension in the room. She truly misses her sister, her late grandpa and her extended family. Thinking of these people can bring tears to her eyes.

Often when Alex has an unfortunate event at school, I know it the minute she walks in the door. She will walk in the door and head up to her room to listen to music. If the situation is bad enough she can make herself physically ill. Her mind and body are unbelievably connected.

Just like her brother and sister, Alex does not like to share her feelings with me. As with her brother and sister I have to catch her in the right mood before I can even probe. In many ways she is just like her sister and brother. The only difference; her siblings can rationalize bad experiences, ignore them and move on. Alex cannot, bad grades, homework that is too hard, or most importantly, negative interactions with her peers will change her demeanor and entire being for an extend period of time.

This time Alex has outsmarted me with behavior I have never seen before, nor ever expected to see. We were called to school because Alex told her teacher she wanted to cut herself on her forehead and become scarface. I have not really researched this, but I have heard second hand that the incidence of suicide or self mutilation in children with down syndrome is at about zero percent. I may be wrong but Alex has never ever ever remotely talked about hurting herself before. I am scared to death.

John and I arrived at school to a very concerned counselor and teacher. I applaud their quick call to us and determination to get Alex to talk. We sat with Alex as Ms C shared Alex had walked into class very upset. Alex said she could not take it anymore and wanted to cut her face so it would go away. She drew her dream scar on the whiteboard and off they went to the Counselor’s office.

What we could get from Alex was that she was having nightmares about her old principal in Illinois and he kept saying her name. She also spoke about all the girls in IL who were her friends and nice to her. She claimed her head hurt because the dreams we giving her a headache. On closer examination Alex had a rash on her forehead, which we cured with hydrocortisone cream. However the fact still remained that something was bothering Alex tremendously.

As far as we knew, John dropped a happy Alex at school and a happy Alex high fived her counselor on the way to her locker. From what we can discover on the way from Alex’s locker to her classroom her mood changed. In my overly quick way to assess blame I figured someone had said something mean to Alex, but truthfully I have no idea and her behavior was certainly extreme for this to be a simple single incidence.

My gut tells me this is stemming from the prom and perhaps not being the center of attention even being ignored. In Alex’s mind her broken foot brought her lots of attention, imagine what a scar on her forehead could do? But, honestly I do not want to over analyze this; I only want Alex to be happy and healthy.

We could look at the prom and the fact she did not feel included and tie that back to her IL school where the kids were nice (the kids here are nice too, but do not include Alex in their social circles). We could look at her old principal and her new principal, who is very welcoming and friendly to Alex, or we could look at the Disney Channel and shows about unhappy kids. I just do not think we will solve this riddle for a long time. We need to change the reaction, the others behaviors will not change overnight.

Alex came home with us flushed and hot. She went to her room to listen to music and spent the rest of the day crying. By bedtime Alex was complaining of a sore throat, headache and became hysterical when I suggested she go to bed. We cuddled and I was able to get her to laugh, by acting silly, quite a stretch for me. We kept Alex home in the morning in order to get a strep test from the doctor. But, no surprise there, Alex did not have strep and demanded she get back to school for art class. She seems to have forgotten her attraction to scarface.

In the meanwhile, we have agreed to make a poster board of the scar, and every time Alex is mad she will write on the poster board. I know she will not share with me, and I will have to become the sneak I know I can be – but perhaps this will keep the scar on the paper and not in or on Alex’s head. I believe we should honor Alex’s unhappiness and give her a safe outlet.

I am not taking this episode lightly at all, I will watch Alex like a hawk and monitor her mood swings, and I know this will happen at school too. But I think and pray in a few short weeks when Alex’s junior year of high school is over and we can relax and go on adventures, Alex’s fleeting scarring attraction will be just a bad memory from my very special drama queen.


  1. This is just like what the Jungian therapists use when you have monsters or voices in your head.

    One day, there was a monster drawn in wild circles. Then there was a fence around the monster.

    Hope you're listening to your gut.

    Changing the reaction first...

  2. wow this is scary i hope u figure out what is wrong fast

  3. Wow. I'm sorry Alex is demonstrating this unusual and frightening behavior. I agree, that the school did a great job calling you so quickly. I'm sitting here, thinking about Beth and what I would do if she said something about wanting to cut herself. I think I would do exactly what you've done, try to find a reason; a recent TV show she watched or a situation that caused her pain... so scary! I'll be praying for you and Alex!

  4. Do you think she has been exposed to peers who use cutting to manage their feelings? (common teen behavior unfortunately). I like your strategy so that she can express her feelings differently -such a worry. Hugs.

  5. If April sees it or hears it on a TV show or movie she can internalize it. That is why I hate anything that talks about suicide or in Alex's case scarring. Good luck. susan


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