Thursday, April 28, 2005

Not Just a River in Egypt

The woman who led last week's Down syndrome New Parent Support Network training session has a 27-year-old daughter with Down syndrome. After we discussed the states of grieving parents experience upon learning that their babies have Down syndrome, she shared her family's stories of Denial.

Her story was funny, but her husband's story really struck me. He said, "Our daughter is going to be the Helen Keller of Down syndrome."

Ah hah. Click moment. This confirmed what I had been suspecting – I am still in denial. So far, though, Ellie has been cooperating amazingly well. I am going to continue on in my little cocoon of denial until I can't anymore. It's comfortable here and it blunts the hard edges of the world outside.

I figure that either I'll lose the cocoon one little piece at a time, gently and gradually, or else Ellie really will be the Helen Keller of Down syndrome. In that case, it will turn out that I haven't been living in a cocoon of denial, but rather allowing my denial to carry me to a place where I could confidently set high expectations for Ellie, encouraging her to become all that she really can become.


none said...

The most common form of denial, that I´ve encountered, was when one´s kid obviously *had something, but the parent(s) were completely in lala-land about it.

I was like that until my son was 3. I was aware that something was off about him, but I chose to believe that "he´ll grow out of it", like everybody was telling us.

I guess I wasn´t prepared to deal with the alternative yet.

But, I think, accepting that your child has a certain condition, and hoping she will be the one to defy the odds is not really denial, unless it impacts both of you in a negative way.

But there is no negative impact, Ellie is thrieving, perhaps because you´re not focused on the limitations, and like you said, time puts any truly unrealistic expectations in a proper perspective anyway.

Jessica said...

I agree with Ciara -

You and Paul are such amazing parents; I have no doubt you will continue to offer Ellie exactly what she needs. I suspect she will continue to amaze you as time goes on.

Psycho Kitty said...

You know, sometimes denial is denial, but sometimes it's faith.

Yankee T said...

If you accept the world's expectations of limitations, then that is what you will have. If you stretch and push and dream and reach, then what you will have is flexibility and dreams and hope. Carry on!

she falters to rise said...

Never underestimate how plastic and malleable the brain is. Physical therapy for the brain works; everyone has the ability to move forward, surpassing expectations. You are not in denial, you just believe in what science is beginning to prove. You are wise and correct and merely being a wonderful parent.

There was an interesting study done many, many years ago that I can't find now. The take home message was that intellectual and emotional performance was directly influenced by expectations. They temporarily put gifted students under the "learning disabled" curriculum and the LD kids under the "gifted" curriculum (you would never get permission to do this now). The LD kids performed well above the expected level and the gifted kids performed below expectation.

My mom has taught an inclusion classroom for 15 years now. She has seen tremendous advances by students having everything from Down's Syndrome to Autism. It's because she's creative, persistent, and, most importantly, because she believes.

Challenging "reality" is the only thing that will give you strength through all of this. I totally agree with the above comments.

PPB said...

Psycho Kitty hit the nail on the head.
She is so, so, so, so loved. I really believe that kids that are loved and that know they are loved achieve because they have nothing to lose---she knows whether or not her bubble pops, you love her utterly.