August 29, 2009

Life is not a bed of roses, unless you count the thorns

This picture has nothing to do with my story line except to show that Alex has an awesome scowl, and she is very happy to share it with us often and at really bad times.

The conventional myth about children with down syndrome is that they are always happy, always ready to please and very compliant. THIS IS NOT TRUE! And lest I have, or will mislead you during the course of this journal - let me set you straight!

Alex can be obstinate, rude, inflexible and a downright pain in the you know what. If Alex does not want to do something, it is often very difficult to persuade her otherwise. The usual bribes and promises that work with my two other kids do not work with her. Her version of the future can not get past the current moment to see what can happen in an hour, a day or the next week.

We often have battles about her homework, her eating habits and her personal hygiene. Alex is not apt to succumb to peer pressure like other teenagers - and the idea that she should do her homework, eat healthy or dress like a 16 year old girl are not important to her. We have had to get quite creative in our reward system with Alex - which I admit is probably not fair to my other two, who are rewarded with praise and an occasional treat.

In terms of homework - it is sometimes difficult for me to tell if the work is too hard for Alex - or she would just rather be doing something else. I have insisted over the years that her teachers send home work for her to do. This has sometimes been a bit challenging as we have had a myriad of different educators work with Alex. Some have been great, and some have not. I stay on top of everyone and everything that affects Alex in her day to day life at school. I have had wonderful meetings and horrible meetings and I have been called the "b" word. But, none of this bothers me - it is part of being Alex's mom - and I am proud to do it.

Food is particularly troublesome for us. I believe that it is the only constant in her life over which she has any control. She does not seem to recognize when she is full and will eat forever. We have ceased to buy potato chips in our house - which happens to be my favorite food. We hide the candy and keep lots of fruit in plain sight - and monitor everything as best we can.

When Alex's sports are in full swing: basketball, skiing, soccer and track we are more successful at food moderation. However, with school just back in session and a summer of little activity - as I work full time - Alex is about 20 pounds overweight. This is where the bribe part comes in - Alex wants an I-pod touch - so I told her if she lost 10 pounds she could get one. I also spoke to her about the track competition next July at the National Games - and explained she would not be able to run very quickly if she did not start eating healthy. Surprising enough she said" Mom, I will not let me team down". So far no poundage loss - but no gains either.

As far as personal hygiene -Alex needs to be reminded every day to take a shower. Since she is a 16 year old girl, she suffers from greasy hair and underarm growth. She does not mind taking the shower - she actually takes about 30 minutes (we call this Alex time) but the fact that we have to remind her is very different than her siblings.

She does not want to be "pretty" and refuses to wear make-up or cute clothing. I have not figured out yet where this is coming from, but I do know there is a reason behind this. I discovered very early on in Alex's life that comments that were made to her or remarks that she overheard can have a drastic effect on her. She once told me that some kids called her stupid and for weeks she refused to do her homework. So we continue to gently chide, covertly bribe and try to understand the "why".

These are some of the many challenges we have on a daily basis. However, as I have said before and will say again, this is just part of being Alex. I often try to put myself in her shoes and recognize the challenges she has everyday. I remind her brother and sister of this when they get impatient with her. But, mostly, I know she is a remarkable person, who is paving her own path, and has her own idiosyncrasies, just like the rest of us.


  1. Hi. Thanks for sharing your day-to-day insights on raising your daughter. I've only read a little about her but she sounds like a remarkable person with a great depth to her personality. I'm following your blog on my Reader and look forward to reading more.
    I have a son who has Down syndrome. He will be 2 in October. By the way, I've added your blog to my blogroll. I hope that's ok.

  2. Thanks - I am so happy you are reading..I was inspired to do this - and am really looking forward to the next year. Congrats to you on your son..I am sure he is also remarkable...

  3. Hi there. New to your blog, coming in from the T21 alliance on Facebook.
    My kid's only 9 months old, but I think this is a perfect reminder for me regarding how comments about, in front of, and to her might affect her in the future. Especially since we're now living in a country with very old-fashioned and rigid gender roles, Mexico, that are very different to what I grew up with in Northern Europe. Just because she's a girl she's expected to be and behave in certain ways, and so much of the comments and things that we're faced with are about the way that she looks or is supposed to look. It's been driving me nuts, but now I'll be way more aware of the lasting effects on her this might have.
    Man, this parenting stuff is hard. I might even have to stop swearing eventually ;)

    1. thanks for stopping by....I still swear and now my kids yell at me :)


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