October 22, 2013

Getting Alex

Parents with children with down syndrome "get" their kids. We understand transitions take time and uncooperativeness occurs when our children are trying to make sense of new information. Stubbornness for Alex is a form of communication, which means she is processing emotions. On the other spectrum, hugs can be stalling strategies to disarm me and smiles to indicate agreement.

My family and my friends are kind and considerate with Alex. Most everyone treats her as an independent responsible person, but not everyone gets her. Not everyone understands Alex needs time to transition. Some will ask Alex questions and not give her time to respond, others will ask her so many questions she shuts down.

There are others who get Alex at all levels. These have included teachers, coaches and friends who have spent time with people with down syndrome. But every once in while someone new, someone who does know Alex enters our lives, and without conscious thought gets Alex.

I have a college friend who lives near Alex, and recently spent time with Alex. With her permission I share parts of the email she sent me.


I had a delightful afternoon with Alex who seemed completely at home with me.  She loved Graeter's ice cream (raspberry chocolate chip is her and my favorite).  Afterwards we walked to the drug store in search of hairspray for her.  She found the hairspray, a shower washcloth and a bunch of school stuff she needed (stapler, small scissors, sharpies and pencils).  On the way out she found a "Hot Guys" issue of a teen magazine with 8 posters of guys like her fav -Justin Bieber.

She was completely delighted until we got a few blocks away and she realized she didn't have anything to hang them up with.  So we walked back and began a search for the SAME kind her Dad had bought.  I asked a nice sales clerk for help and she suggested several alternatives but Alex got increasingly agitated.  I must say I am impressed with how well and clearly she signals when something isn't right.....Finally, I said I needed some blue tack (that blue clay like stuff we used in college), bought it for myself and shoved it in my pocket.

Back on the street, she cheered up again.  She called me crazy, I called her stubborn and we laughed as we walked back to the car.  "I think we're both crazy but I like you", I said.  She said she loved me and threw her arms around me.


This was all classic Alex. Ice cream, hairspray, Justin Beiber......the melt down.....the recovery. All handled with grace and respect by my friend Lisa. We are lucky to have such friends so far away from home.

One more thing Lisa shared ........she has wonderfully strong emotional intelligence... yes she does.

If you have not liked our page, it is a good way to stay on top of the ups and downs of college for a person with a development/intellectual disability. I have no idea what is going to happen....but I will share the good and the bad. Please click on "The Ordinary Life of an Extraordinary Girl" now.

1 comment:

  1. You've articulated this so well. This is one of the hardest bits for me to try to articulate. Excellent.


Thanks for your note, we love hearing from you!