December 19, 2009

Revisiting the thorns

Early in my blogging career, a mere 4 months ago, I wrote an entry -“Life is not a bed of roses, unless you count the thorns". It is time to reiterate those past words.

Despite some of my previous entries, I am not a Pollyanna. I do not always believe that having a child with special needs is "cool" or "fun". Often, Alex can be frustrating and test my patience. I have even been known to lose my temper. This is not something I am proud of, just part of how we react to tough situations at times.

I was reminded of this other Alex, (and by association, the other me) recently. John and I were invited to a very nice adult-like Holiday party. At the same time, Alex needed to get picked up at basketball practice, so I could not get her home. I checked and "of course" Alex could come with me to the party. There were going to be other kids - no big deal.

Alex is often quite tired after basketball practice, and tiredness begets meltdowns. Usually, in a social situation, Alex will rise to the occasion and act appropriately, but this was not the case at this party.

Alex spent two hours clinging to me and whining about food. She was rude to my friends, and had a temper tantrum when her ice bag melted (this was due to an injured toe). She behaved like a young child, not the 16 year old daughter I enjoy so much. I left disappointed and exhausted from apologizing for her horrible behavior. Not really what I had hoped for that particular evening.

Thus I am revisiting the following...

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.

Still true four months later. I am so looking forward to my winter break....I go to work and the kids stay home....just like a vacation!


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