FAS ESTEEM by Mercedes Alejandro

A lot of people have expressed horror that our children are still looked upon as something to be ashamed of and hidden away, even here and now in 1999, but let me tell you, I’ve run across a lot of this in the Hispanic community. Hearing it now on faslink only confirms that this kind of ignorance and stupidity on the part of the people not limited to race, cultural mores, economic condition, or ethnic origin!

I give a talk on "how to talk to your child about his/her disability" and at the beginning I share stories that (I have permission to use) were told in our Hispanic parent support group meeting when the parents were sharing. The ones I use to illustrate the point are:

(1) Mom of a 7 year old girl with Rett Syndrome riding to the clinic on the bus is told by another passenger as she passed the mom and child on the way to the exit, "That’s the results of drug abuse!"

(2) Elderly mom of a 21 year old young man who uses a wheel chair and has limited use of speech and other complications, is told as she leaves the grocery store with her son, "God is punishing you for something you did!"

The point I am making is that we have to give our kids LOTS AND LOTS of opportunities to build up self esteem. So they can confront these attitudes when they see them. Kids generally follow our "cues" and learn how to respond, for example when they fall the first look at us to see if we are going to respond with shock so they can break into tears or if we are going to look and say, ok sweetie get up and play some more."

It’s so important to watch how we talk about them when they are around and even when they are not around. If we continually refer to our circumstances of caring for them in the context of how burdensome it gets, how tired we get, how hopeless we feel. They will internalize the message. I am no Polyanna (although I sound like one), but our tone of voice, our body language, our expressions all convey messages to our kids. I tell parents not to say with a low voice like we’re ashamed, "My son’s in Special Ed," but instead to raise our head high and say it loud and proud, "My son’s in Special Ed!" which brings me to example #3.

(3) There was a mom of a 3 year old starting school who called me because she needed help getting more hours of speech for her child. She mentioned that she did not want to meet the other parents at the school because, inevitably, she would have to answer the question, "What class is your child in?" A year later after successfully negotiating additional hours of speech and becoming an educated advocate for him we had a chance to talk. He was starting at a new school and I asked her if she was going to join the PTA and meet the other parents. Before she could answer I told her with all the love I could muster, "A year ago you were ashamed to let others know your child had special needs," "This year after all the services you’ve fought to obtain for him you and I know he is valuable and worth fighting for… now its time to be proud and hold your head up high and when they ask what class he’s in say so with confidence!" She agreed and I think she is going to join the PTA and ask them to hold presentations on "Students with Special Needs."

The more we go into society and take our children (inclusion) to church, the store, the movies, etc. the more contact they have with others and others with them. It’s clearly a two-way street. If we choose to respond to their rudeness we must be sure that we are modeling for our children how they ought to respond if they are ever faced with the situation and we are not around.

Finally, I add my own story, #4:

(4) My son, Nick, (15 years old at the time) and I were at the dinner table having a major disagreement. So much so that his little sister looked like she wanted to find a rock to hide under. After we blew off steam we tried to continue eating but ended up in a staring contest. Of course, mom stared him down. Later when we were clearing the table he said, "You know mom in my new High School there’s a lot of kids who don’t know me and they stare at me, like in the cafeteria." "What do you do when they stare at you?" I asked. "I walk up to them with my tray and stand there staring right back at them until they look away." "You mean you stare them down?" "Yep" Imagine how proud I was that he would not tolerate being stared at just because he looks different!

There are still a lot of barriers to break down in society-at-large. We can start by using People First Language (by Kathie Snow), by changing our own attitudes toward our circumstance (see #3), and by confronting/educating others that our children have every right to be a part of society as anyone else.