Monday, April 20, 2015

Dear Sears, Thank you for Helping My Daughter with Down Syndrome

Chrissy shopping in our local drugstore.
My 13 year old daughter Chrissy with Down syndrome has a support person to help her reshape her behaviors so that she can get along better in everyday situations. Christina has autism as well as Down syndrome, making her more impulsive and stubborn, and has a very limited vocabulary which is a recipe for disaster in public. Most times I leave her home when I shop. On Friday we took a risk, and took Chrissy to Sears. Ana, her helper, and I were looking for bathing suits at Lands End so we look good when we take her to the pool, her favorite activity.
Christina was not ready for Sears. At first she ran in the door of the store and sat in the waiting area for Miracle Ear. She refused to budge despite harried looks from the lady in the office. I told Ana to go and shop while I kept Christina company there. As soon as Ana left, Chrissy bolted after her, and I tried to shop with her in the costume jewelry section. She is 13 and was fascinated by the bling of the sale watches. I was not quick enough to keep her from picking up a Hello Kitty watch in a plastic case. To my horror, she pitched over the railing of the escalator, where it glanced by the head of a manager and smashed to pieces on the escalator, creating a scene. Several judgmental onlookers were making my face turn red, as I yelled down the manager, "I'm sorry! My daughter doesn't understand what she did was dangerous!" He cleaned up the mess without making a huge deal about it. I continued on my way, trying to ignore the diapproving stare of a perfectly coiffed blonde mother of a perfectly dressed blonde  daughter of five. The mom and the little girl scowled at me, lifted their noses in the air and turned on their heels as if pleased to have let me know what they think of such behavior. My face burned red and I started to sweat. Ouch!
I could not find Ana in Lands End and so Christina bolted out of Sears to the mall where I gently helped her to the carpet. She cried and cried wanting to run top speed through the mall. and I kept helping her to the ground explaining that we were waiting for Ana. Onlookers saw her sobbing in frustration and I was worried they would call the authorities. Finally Ana appeared in Lands End and we joined her on the comfy couches provided for customers.
Two friendly salespersons provided Chrissy with coloring books to keep her busy while I tried on a bathing suit. When I emerged to buy the suit, Ana and Chrissy were gone. No one knew where they went and I had no cell phone (a certain young lady likes to hide it!) to contact Ana. Her cell phone had no power anyway, so I ran around and around the store and the mall searching for them to no avail. Finally one of the nice salesladies who gave Chrissy the crayons saw my distress and offered to page Ana.
There was no answer. More panic. Suddenly the saleslady got a cell phone call. The other saleslady was going home for the day and spotted Chrissy and Ana in the parking lot. I thanked her profusely and gratefully left. My hands were shaking and my vision was blurry from the high blood pressure induced by my panic. We went to eat pizza and discuss why Mommy was worried about Chrissy and how to behave next time. Trust me, the next time is a LONG time away!
The next day I came without Christina and sought a manager, I told her this story, offering to pay for the $15.00 watch. She said it wasn't necessary, and was pleased to hear of her sales clerk's efforts to help me with my daughter. She agreed that the salesclerk deserved props for her out of the ordinary consideration for a needy customer.  I am very grateful to Sears for hiring three employees who care about the dignity and the safety of customers with special needs. Its easy to judge Christina as the blonde lady did, as just a spoiled brat who needs discipline, and I can't claim perfect parenting, however that is not taking her complex challenges into consideration. Instead of judgement, a  little compassion goes a long way to make my and Christina's life easier.

Someday Christina and I will walk through the mall like I do with her older sisters, calmly shopping and enjoying one another's company. But it will take time and patience, and its a far off goal at this point. In the meanwhile, its good to know some of Sear's employees have my back.

Tuesday, April 14, 2015

My experience at a Hillary Clinton Rally

Since I don't see much difference between the 'new' Hillary Clinton listening tour today and the one I witnessed during her Senate run in 2000 I thought I'd share my reflections at Patheos. Even the Scooby Doo van is the same.

Monday, April 6, 2015

My Response to Changing the Conversation

Christina, age 13, helping make her own lunch
The discussion of pre natal testing and abortion as usual is a very emotional one. I decided to wade in. Here the original post. The blogger at For Elisium has it right, she says, 
"The new generation of kids with Down syndrome is the new normal, the new majority. Unfortunately, the people at the front lines don’t seem to know it yet. In fact, people with Down syndrome have scarcely been given a chance in recent history. First they were institutionalized, just as they are still in many countries. But in the U.S., when parents began questioning that practice in the 60s and 70s and insisted on bringing their babies home and insisted that they should be able to go to school, the laws started to change. This could have made an incredible difference for new babies born with Down syndrome, but the new realization came at the same time as two strikes against Down syndrome: Roe vs. Wade and prenatal testing.
Laws aren’t going to change–got it. Acknowledged. Not going to change anyone’s mind on abortion. Check."
The part which got me fired up is the comments from moms who aborted their babies with Down syndrome and are suffering at Baby Center. This is a sick culture which asks moms to fall on the swords of their consciences to save their babies from a life full of suffering. This type of deception, and self-delusional violence makes me angry.  Women are wounded, babies are dead, and the world is deprived the delight of these beautiful human beings. What may I ask , are we accomplishing besides some sick type of eugenics? Here is my comment on the blog.

The doctors are either ignorant of the prospects of living a fulfilling life with Down syndrome OR they know the truth, and are deliberately telling terrifying stories to scare moms into abortion. They may think they are sparing the mothers, the babies and society but as a society, we are past that type of “doctor knows best” paternalism.
The moms are kidding themselves if they think that by abortion they have saved the baby pain (do some research about how much pain unborn babies feel, particularly later in pregnancy) or that it is less selfish. We can not spare our children pain in this life, we can only accompany them through it. That is our job as mothers, not to make a decision your very heart screams to you is wrong.
My 13 year old Christina does not have a poor quality of life because she is very limited intellectually and has little language. Her life is very similar to my typical daughters. She is happy and sad, excited and frustrated like all teenagers. She is embarrassed by her mom, is a Daddy’s girl, has her favorite TV shows, loves attention when she gets dressed up and has her favorite pop songs.
Who am I to decide her life is not worth living? If I even had the unmitigated gall to suggest she would be better of dead, she would look at me as if I were crazy. Christina loves her family, her pets, chocolate, swimming and most of all she loves life. Her life.
I am a Catholic and look forward to seeing her fully functional in Heaven, singing God’s praises with full voice, and doing cartwheels in the Elysian fields. When her time comes. But I have NO right to decide when that time is. God gave her a life filled with purpose and she must live out her destiny. My older daughters my husband and I were chosen to guide, protect and learn from her in our mutual journey. That is what a family does. We grow as a unit, crying, laughing, working and loving one another with all our faults.
And, God willing, we will celebrate that eternal Alleluia in Heaven together. And I suspect my daughter has seen Heaven a bit more clearly than we have, as she does not judge her neighbors by their abilities. She looks at them as friends.