How to Raise the Perfect Imperfect Down’s Syndrome Child

What Do You Do With the Perfect Imperfect Down’s Syndrome Child?

What do you do with the perfect imperfect child?  What steps do you take when the baby long awaited arrives and the doctor tells you something is wrong?  What do you do when your children tell you your grandchild is not the perfect little girl you prayed for?   And what do you do when the diagnosis is Down’s Syndrome?  If you are smart, you tell the experts and her doctors to go to hell and take their preconceived notions with them!

How Doctors React Matters To Parents

That first day, our baby came to us looking perfect in her parents’ eyes.  Ten fingers, ten toes, and all other much needed parts.  However, the doctor saw something we did not – flecks in her eyes and weak muscle tone.  We had one whole day of joy before he came to break our world apart.  Even worse, Bruce, her dad did not realize what the doctor said.

I won’t go through everything here, except to say Bruce left to take his parents Christmas shopping.  In his absence, three times nurses and doctors came in to tell me to sign papers for actions that, if not taken, would destroy our child.  By the third one, my signature scrawled over half the sheet of paper, unrecognizable as my usually neat, flowing script.  She lived.

Eventually, after two long weeks, she came home to us.  She was so beautiful!  How could anything be wrong?  The diagnosis came back as Down’s Syndrome, a form of mental retardation often accompanied by out of sync physical features.  The day we brought her to our house, the doctor spoke to us.

“Just take her home and love her,” he said over and over.  Then he added, “But don’t expect anything from her.”  He infuriated me.

“Of course, we will take her home and love her!  We’ve waited for her almost eight years.  And we will expect everything, until she says she cannot do something.”  That is exactly what we did.

How Grandparents React Can Destroy or Make Relationships

When Jaimie was born, Bruce’s parents were with us, but my parents lived 800 miles away.  Yet both of them reacted in shocking ways that made her birth into something terrible, except we refused to accept them.  We had a daughter to raise.

We felt pretty proud of ourselves, having cried the bitterness out for the two weeks she remained in the hospital.  Then we faced the true feelings of her grandmothers.  My mother wanted to come and see us and perhaps help care for her new granddaughter.  But she wanted no surprises.

“How does she look?” Mama asked.

“She’s beautiful, Mama, just beautiful,” I told her.

“Now stop being like that.  What does she really look like?”

“Mama, she is beautiful.  There are two types of Down’s Syndrome, Trisonomy 21 and Trisonomy 23.  Jaimie is the second.  She does not have strong Mongolodian features, like many Down’s babies.”  What I didn’t tell her was how fortunate our baby truly was because some versions of Trisonomy 23 were truly horrible.

Upon her arrival, Mama fell in love with her new granddaughter and agreed that she was, indeed, beautiful.

What No One Should Ever Tell Parents of a Down’s Syndrome Child

If we thought my mother’s words rough on our baby, my mother-in-law managed to top them.  She seemed to think of Jaimie as more a pet than a child.  She suggested we sterilize her so she would not, even accidentally pass along the ‘disease’ to another child.  I will not put in print what I wanted to tell her.  However, my husband tended to be a little gentler, as he informed her we had a daughter and not a dog.  He suggested his mother remain away from our child until she changed her mind.

How Grandparents Should Treat a Child With Down’s Syndrome

Grandparents should treat their grandchild, who has Down’s, as they would any grandchild.  They need love, responsibility, joy, and kindness in the lives.  What they do NOT need is pity and everyone being absolutely certain they are useless and drags on society.

My mother used to tell me, when we played the card game Battle with Jaimie, to just let her win.  I refused to do it and, instead, insisted she learn the game if she wanted to win.  It took her a year, but she learned and she won.  To this day, she knows many board games, as well as card games and gives no quarter when playing.  Bruce and I held that belief in everything she did and sometimes she outsmarted us.  At a very young age, she became a genius at getting out of the house, opening locks, and finding ways to do things we forbade, often keeping us balancing between joy and terror.

The thing is, like any child, if you expect nothing from these children, that is exactly what you get.  If you expect everything, they work to live up to your expectations.  Jaimie wanted to learn to tie her shoes, refusing Velcro clasps or slip-ons.  It took her twenty-one years, but she learned.  Determination is one of her strong traits.  She is also great with computers and other electronic equipment.  And before she went on the Jenny Craig diet to lose the weight a doctor insisted she could not lose, ‘because Down’s children just can’t,’ she became an excellent cook.  Of course, I always supervised.  By the way, it took two years of her working on her own to do it, but she went from 205 pounds to 120.  Not too shabby for someone who ‘couldn’t’ do it, right?

The Horrible Truth About Down’s Syndrome Children Births

When I told the doctor that of course we would take our daughter home, I asked, “What would you expect us to do?”.  His answer shocked me.

“You would be surprised how many parents leave their ‘imperfect’ children in the hospital to be collected by institutions.  They never want to see them again.  They are tossed aside like dirty laundry.  Have you ever seen what happens to many of them in those places?  They are left in filthy diapers for days, beaten if they make a mess, treated worse than abused animals, all too often.  If parents don’t go to see them, there is no one to speak on their behalf.  I just did not want your baby to go to one of those.”

Feeling sick?  I did.  How could anyone do that to a baby?

However, since our sweet girl has been with us, forty-one years so far, we have been so blessed.  She made it possible to keep her dad at home and care for him after his stroke, as she cheerfully helped with so many tasks.  When he passed away three years later, we were called to my hometown in Alabama to care for my brother, who had kidney disease.  Once again, it was Jaimie who happily joined me in caring for him for five all too short years.

How to Raise a Perfect Imperfect Child

How do you raise a perfect imperfect child?  You praise God for giving you this wonderful gift.  Then you give that child hugs and praise several times a day.  And you listen to them and learn to reappreciate the world every day of your life, as you see it through their eyes.  You give them responsibility without hovering over them every second.  You expect the best, but if there is a bit of not quite the best, let it ride.  You teach them to cook, clean, wash clothes, and otherwise care for themselves as much as they are able.

They have no biases.  They do not see skin color, age, sex, religion or anything else that separates imperfect humans.  They see hearts because theirs are so huge.  When insulted, they turn the other cheek and tell the person insulting them that they are loved.  They cry, laugh, love, but do not hate.  That makes them as close to perfect as the human condition may ever be since Christ.  And that, dear grandparents, is why you hug them to you and let them know that they are special in your eyes – not because of a disability, but because they are your grandbabies.

For more information on raising a Down’s Syndrome child, check this out.