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Amy Julia Becker

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We Didn't Run Away

Posted: 09/10/2012 12:17 pm

My husband and I found out that our daughter Penny had Down syndrome two hours after she was born, and we shared the same instinct. We wanted to run away. Within minutes, I had the route planned out from the hospital room to my grandparents' summer cottage, three hours north, at the end of a secluded dirt road that would be abandoned in the wintertime. No matter that the cottage had no insulation against the December cold. It represented a familiar and safe place that would take me far away from everyone else, and I wanted to get there as quickly as possible.

For years, the memory of that desire haunted me, until I finally realized that every time I had envisioned our escape, I envisioned us as a new family of three. In other words, I wanted, desperately, to run away from the doctors who were predicting a life of difficulty and hardship, from the nurses who I imagined whispering about our situation, and even from friends and family who, I suspected, just wouldn't know what to say or how to think about us as anymore. I didn't want to run away from Penny. I wanted to run away from everyone else.

And I wanted to run away from the future. I was scared of the labels that had all of a sudden been added to our family. I was scared of therapy and specialists and perhaps most of all, special education. I was scared that Penny wouldn't learn, wouldn't make friends, that school would be a source of stress rather than a community in which she could flourish.

We didn't run away. Looking back on it, there were some reasons to fear. People still use words about kids with disabilities as jokes and slurs. In Penny's short lifetime, that list includes everyone from high government officials to TIME magazine to high school kids walking past me on the street. And plenty of people still see Down syndrome as a source of suffering or assume that Penny's life will be impoverished as a result of her extra chromosome.

But I've also found a host of people who want to see Penny succeed, and if there is any place that she has been accepted and supported it has been at school.

It is six and a half years later, and we just moved to a new town. A few days back, Penny and I visited her new school. She stuck out her hand to introduce herself to the women who work in the front office. We noted the fresh green and blue paint on the walls. And we met Penny's two teachers, one of whom has training specifically to support students with special needs. If first grade is anything like kindergarten, Penny will thrive. She will make friends and read chapter books out loud and squirm her way through art class and yearn to grow tall enough and strong enough to do the monkey bars all by herself.

Forty years ago, Penny might have been denied access to a free public education. Forty years ago, we might have been advised to institutionalize her upon birth. But in recent years, parents, teachers, and legislators have worked to ensure a place for kids like Penny in our nation's classrooms. It isn't always easy or pretty. Plenty of kids still suffer the injustice of unequal resources, abusive classroom aides, the social ostracism that can come from peers and teachers as a result of their disabilities. But the doors are open to them, at least in legal terms. And countless families can attest to the value of including kids with special needs in our classrooms, both for the kids themselves and for their peers.

This morning, our whole family walked down our new street to wait for the bus. We stood alongside four other kids from our neighborhood, and when the bus finally arrived, Penny raced to board it, hand in hand with a third-grader who volunteered to be her buddy.

Six years ago, I wanted to run away with my little girl bundled up in her receiving blanket to keep her protected from the world of Individualized Education Plans and reading assessments and behavioral modifications. Today, with gratitude, I watched my little girl run away from me.

ptb swinging
 
 
 
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07:42 AM on 09/16/2012
I'd want to run away too. It does mean a life of sacrifice and hardship, it does mean enduring slurs for the rest of your life and it does create assumptions of poverty for the afflicted because they'll grow up and end up on some dole that we have to pay for.
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pslcitizen
I intend to live forever. So far, so good.
06:33 AM on 09/16/2012
Penny is adorable.
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fpwillson
Fighter for justice and the truth
01:44 PM on 09/15/2012
That was good Amy.
01:24 PM on 09/15/2012
bless you.....and bless Penny and the joy she brings to your life - and OURS xo
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ZANDALEE
always remember where you came from
12:19 PM on 09/15/2012
Hey Huffpost yesterday you had this titled "I was glad we didn't run away" or something like that. Sad you have to change the title to get people to read things.
05:02 PM on 09/15/2012
Very strange, saw the "Why I was glad my daughter ran away" title. Am I missing something?
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deeptubes
sin - an imaginary disease with an imaginary cure
11:26 AM on 09/15/2012
What a precious little girl!
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Bellamalti
boston always in my heart
10:49 AM on 09/15/2012
Penny is so cute, and will have a good life. NEVER give up.....Never give up
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Marie Speranza
09:48 AM on 09/15/2012
I think sometimes couples want children to help their marriage or even a parent may think a chld would be able to care for them when they are old...A child who cannot do that will have to be loved, and should be, for who they are without reservation:: as children should...the love you give them, and the love they give in return will be different according to their needs. You will have to think about their life if you are ever gone...so they are well and happy...Happiness is not what a child will do for you when you are old and gray, or infirm, but the joy you can give each other for as long as you both live. The children give unconditional love, I believe. Children are a part of us...when they hurt, we hurt...when they leave us a part is missing. They are such a part of our life, you would have to be a parent to experience it. God Bless all the DS children of the world...all all the children of the world.
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vaygollybum
just wondering
09:34 AM on 09/15/2012
For some reason my mother was terrified of people with downs syndrom. She would not even look at them. So I was afraid. Years later I met Joe, he was my best friends Uncle. Best experience I ever had. I learned to appreciate him and love him. He became my uncle too.
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lifehub
I don't answer (to) libs.
06:12 AM on 09/14/2012
This is a story about courage and personal growth amid hardships in the face of adversity. Best wishes to all concerned.
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Meerrinhuff
05:40 AM on 09/14/2012
It's so sad that about 90% of Downs pregnancies are aborted in the U.S. now. I have a nephew who has Downs, and these people don't know what they are missing, but that is Roe v. Wade for you.
07:06 AM on 09/14/2012
Why should someone be forced to bring a severely disabled child into the world to suffer for 70-80 yearrs? My aunt was mentally retarded and for over 80 years her life consisted of sitting on a porch swing looking at traffic go by and walking around the block looking at stuff in dime stores. My family hired someone to drive her places and all the woman did was stick her in the passenger seat while she did her errands. My mother and I drove her to parks sometimes and took her on a picnic, but it was so hard for her to get in and out of the car and if she fell it was hard to pick her up so it was a rare occurrence. And she did notice her low quality of life.
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Meerrinhuff
04:12 PM on 09/14/2012
This is very sad, but it does not justify the systematic elimination of 90% of a group of members of the human family, who bring great joy to those who have the love and compassion to appreciate them. I still believe that it would have been wrong to have executed your aunt for her imperfections. None of us is perfect.
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teacupsmommy
U2 Rocks!
12:56 PM on 09/15/2012
I had a friend Tom who was mentally retarded. He died last year of a sudden heart attack. I took to my room for a month. I didn't feel like talking to anybody. Tom was such a blessing to me. His innocence was refreshing. To him, I was the tuna. He liked music, food, Lawrence Welk and talking on the phone with me. His death was one of the worst days of my life. I just ached. His sister, one of my best friends still mourns that loss sixteen months later. If you asked his siblings, they would never say they were forced to have Tom in their lives. Tom's mother fought to be able to have children like him educated and two weeks before his seventh birthday, she succeeded. Tom never lived in a home, he was living with his sister and she loved him too. The world would be a less bright place without these special ones. They love unconditionally, rejoice at everything and just are good at showing us that not everyone needs to accomplish everything in the educational or corporate world in order to have an impact. I'm so glad Tom was born and will forever mourn the day he was taken from us.
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Octagonalsign
No, YOUR micro-bio is empty...
08:49 AM on 09/15/2012
I guess the point is, you do not make other peoples choices for them...based on your experience. Being sad is your choice, but don;t blame it on others.
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Meerrinhuff
03:41 PM on 09/15/2012
Of course we make other people's choices for them. If they beat their children we stop them and arrest them. If they break any number of other laws, we arrest them. In this case they are killing thousands of Downs babies, because they are not perfect, and a more just legal system would stop them.
04:50 AM on 09/14/2012
It is wonderful to read something positive, in a world that seems to only report the negative. I've always felt that kids with downs, and other disabilities were angels among us. Penny is your very own angel. You are blessed to have her and she is blessed to have a mother who wants to protect her from today's harsh realities. So when you look at her beautiful eyes remember she is an angel, sent to bring happiness and love.
04:45 AM on 09/14/2012
Your daughter is darling! May you all live a happy, fulfilled life. And I guarantee this kid will remain your best friend and not turn into a smart aleck teenager you don't recognize. That in itself is a gift from God.
04:34 AM on 09/14/2012
Quote: Plenty of kids still suffer the injustice of unequal resources, abusive classroom aides, the social ostracism that can come from peers and teachers as a result of their disabilities. Unquote.

Just where do you get the statistics for a comment like this?

Teachers and aides who choose to specialize in children who have special needs are HIGHLY trained and carefully screened.They have to earn specialized credentials to work in that part of the educational field. NO TEACHER or aide is left alone with SDC children (Special Day Class). Federal and State mandates are rigidly enforced. Teachers without specialized credentials and training MAY NOT work with such students or the district involved is begging for fines, penalties and the loss of funding.

Furthermore, it is YOUR DUTY as the parent to ensure that your child is enrolled in a school that meets his/her specialized needs. It is YOUR DUTY to ensure that the school has all the related paperwork indicating your child's diagnosis, prognosis, and medications prescribed (which MUST be administered under the supervision of an RN).

Our site has two SDC classes. There are two teachers and and four aides. The class size is mandated by federal laws and the student to teacher ratio is far lower than for a regular classroom. Sites are inspected REGULARLY for compliance. The Williams Case people are also involved.
01:18 PM on 09/14/2012
1. You could start by looking at nationally reported incidents in NJ schools just last year for reference before jumping all over her. 2. If you've ever had a child of your own, neuro-typical or not, you would know that children can be very cruel. A child with any disability is an easy target. 3. Congratulations for being in a district that is so backward it still has self-contained classrooms. And, 4. Where is there ANY indication that she hasn't done any of her "DUTY" (as you so condescending put it)?
11:21 AM on 09/15/2012
Who are you to carp? YOU just did what you accused me of doing. Which means: A) your reading comprehension is poor
B) you are as ill-informed as the author of the article
C) NJ is not the be-all and end-all of America; it's one of the smallest states
D) all of the above.
04:29 AM on 09/14/2012
She's BEAUTIFUL!