March 3, 2010

Good News/Bad News

When I look at Alex, I see a beautiful 16 year old girl. She has braces and a bit of acne just like other 16 year olds. It is often hard for me to see the down syndrome in her features, but they are there. I was told this would happen by other parents. Very simply, the down syndrome goes away.

To me, this is a good thing and a bad thing. Alex is just like any other 16 year old; she wants to have friends, and be popular. She can read, write and go to class. She speaks well, eats well (too well) and loves sports. Some days when I wake up I forget Alex is disabled.

But I know Alex is disabled, she has down syndrome, and I need to remind myself she has delays other 16 year olds do not have. As an example, I recently found the following:

NAME EXCLUDED TO PROTECT THE INNOCENT is my boyfriend and hot and hottest. I want to go out on a date with you. It is OK by you to be your girlfriend and I have a crush on you and I am in love with you in my life. My type is funny, handsome, sweet and jokes. I want to talk about my feelings are it is awesome to be with you. You and me are you sure. I am so it's ok to be a boyfriend and girlfriend. You need space and I will give you space to time to think about it. So fine with me then next day you and me are boyfriend and girlfriend. We go on a date, like movies and to dinner anything works for me the next day your x girlfriend gets jealous skip it.

The good news; although this love note is not grammatically correct and is missing punctuation, the spelling is perfect and the handwriting completely legible. Alex has expressed her feelings in a logical and clear manner. Really quite an accomplishment.

The bad news; this note scares me to death. What if I had not intercepted this note? Is this one of many notes Alex has written to prospective suitors? Will someone take advantage of her? Are other kids laughing at her because of these crushes? Should I be more active in helping her meet boys similar to her? OMG!!!

Alex's maturity level is not even close to that of a 16 year old. She wants so much to fit in, but her ability to process and synthesize social nuances is delayed. She compensates by developing huge crushes and writing notes. Alex knows her peers in school have relationships with boys, and she wants a boyfriend just like other 16 year olds. She models her behavior on the Disney channel teenagers.

My children are not comfortable talking to me about their social lives. Despite my incessant questioning, Courtney and Tom will not confess to any boy/girl relationships. Courtney studies hard, so I believe her. Tom, on the other hand, has me convinced he is not interested in girls at all; only snowboarding. John has me convinced all 14 year old boys dream about girls all day long. I am confused.

Alex is no exception, she will clam up at any inquiry into the opposite sex. I am a failure at helping Alex with the nuances of teenage relationships. Fortunately, there is a mechanism in place to help Alex with social issues. I insisted this be part of her IEP.

Alex meets with the school counselor three times a week; twice alone and a third time in a girls group. The girls talk about social issues, hygiene and clothing. Alex enjoys these times, and I have seen improvement in her maturity level and awareness of her behaviors.

As a follow-up to my note discovery, I will talk to the Counselor. She will very gently lead Alex into a discussion around boys, boy friends and appropriate behavior. This may or may not be successful, but at the very least Alex will continue to work on appropriate behavior for a 16 year old. Alex always learns, just a bit slower than her peers.

Yes, in my eyes, Alex is perfect. However, I do need to remind myself; Alex does have down syndrome, and there are challenges that need to be addressed related to that darned extra chromosome. This is always a delicate balance. So I reiterate, we hope for the best and adapt as needed.

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