May 15, 2011

That's what Friends are for

Alex has brown hair, green eyes, is slightly overweight and has a great sense of humor. She also has down syndrome. In our house we live with Alex, a fun, sassy and moody teenager. We do not really see the down syndrome anymore, we see Alex and her quirks. However, down syndrome is never too far away and at the most inopportune times we are reminded of it.

The high school talent show was this past weekend, and first prize was an I-pod touch. Alex has been practicing the song “That’s what Friends are for” in her room for a couple of weeks. She was diligent about taking her guitar to school to practice and burned the music onto a CD to use as a guide. We were not involved at all, it was all Alex.

Alex was the third of twelve performers. She set up her stool, her microphone, motioned for the music to start and sang for four minutes. My extraordinary daughter does not have a great voice, nor does she really know how to play the guitar, but she loves to sing. She wants to be included and knows the onus is on her to sign up for activities and try her hardest.

As Alex sang I did not see the down syndrome. I saw a passionate and confident teenager trying her hardest to be part of the high school community and participate in activities she enjoys. Despite Alex’s minimal guitar skills and questionable signing voice she was loudly applauded. I thought she was perfect, but I am her mother, and my reading glasses are often rose colored.

The rest of the show was quite delightful and by my reckoning Alex got 11th place. This was fair and truthful, she did not deserve a better score, just praise for a job well done. Just like the other kids, Alex participated, preformed and was judged. She was part of the show, fully included and appreciated by the audience. I was proud of her and for that hour I did not see the down syndrome.

After the show Alex was not to be found. The other performers came out to greet their fans and families, but not Alex. As I searched, a few girls approached me to say Alex was in the back room crying. They had tried to help her but she responded with a very harsh “leave me alone”. I tracked her down only to receive a “go away” greeting. The only difference, she followed me in to main room and sat in the corner crying hysterically. The down syndrome was back, and I knew this was not going to be pretty.

More people approached Alex to try to help, she ignored them and cried harder. I ended up apologizing for Alex, something I do not like to do. We waited for 15 minutes for her to calm down to go home. In the end Alex made a spectacle of herself. She also compromised the advances she has been making with her peer group, and as gracious as they were, it was a big step backward.

Yes, Alex has down syndrome, she can become so caught up in her emotions and does not yet have the maturity to process her feelings. This can cause huge breakdowns, which fortunately are coming further and further apart. She is almost 18 and this needs to be addressed.

In this case, Alex was so caught up in the I-pod touch, something she already has, she did not recognize her success. I did not realize it at the time, but Alex only focused on the prize, and could not process the disappointment. Down syndrome has delayed Alex’s maturity level. I know she will get there, just later then her peers. Alex does grow and learn, she just needs more time.

Sometimes life goes so smoothly we do forget about down syndrome and that is not fair to Alex. We can get so caught up in all the good stuff we forget about the basics, Alex does have down syndrome. We need to think like Alex and prepare her for unhappy events in her life. After all “that’s what friends (and family) are for”.

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  1. Oh my gosh, I could see Beth all over this! The trying, the determination, the success... only to be met with tears and isolation. This was a great post. You said it so perfectly... 'we get so caught up in the good stuff that we forget she has Down Syndrome.'

    Great job singing and playing the guitar Alex! You were really good!

  2. I'm so struck with her confidence on stage--and she's got such clear articulation while singing, which, in our house, is rare. Great job Alex!

    Wonder how much of the moodiness is estrogen. Do young men with Down syndrome have these kinds of drama? Hannah invents drama when she wants attention (similar to Alex's hurt shoulder), and, if I'm patient, I can ignore it and she'll stop. But I'm usually out of patience.


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