In response to my last post, a reader asks:

“unfortunately, not all Down children are so beautiful and cute. I mean, you can hardly even tell that Yirmi has it! What would you tell a mother who’s child is not as charming?!”

A person’s value isn’t based on how charming he is!  Yirmi being who he is now didn’t keep the doctors after he was born from repeatedly asking me why I didn’t do the prenatal tests that would have allowed me to abort.  So cute or not, to them he had no more reason to exist than any other child with T21.

I would continue to say that a child is a child and deserves to be loved and valued for who he is, as he is.  Every single person is beautiful and a genius in some way and that means all children – with or without Down syndrome.  We need to broaden our mental picture of what beauty is. Is there a mental ceiling on what a child should look like or act like for his parent to be willing to embrace raising him?

(To all of those reading: please consider changing the way you refer to children with Down syndrome in a way that defines them first and foremost as a person – Yirmi is not a ‘Down child’ and neither is anyone else who shares his chromosomal makeup. Here’s something I wrote in which I explained my perspective. As the wise Horton the elephant of Dr. Seuss fame says, “A person’s a person no matter how small.”)

Another reader responds:

“I’d also add that what is normally seen as a reason for despair in parents of “different” children is often actually a consequence of it… That is, Yirmi probably presents as someone who hardly looks different just because the whole family always accepted and appreciated him for who he is rather than let the difference create a distance. In times past, children with conditions such as T21 or autism would be locked away and ignored, so of course they’d never realized any of their potential. It took inexcusably long for medical profession to realize that the same would have happened to neurotypical individuals if they were placed in same circumstances.”

I completely agree with this sentiment.  The more you treat someone like one of the group, the more they act like one of the group.

I did a LOT of thinking for the first couple of days after Yirmi was born – all I did was think, actually – and one thing I felt in my bones in those early, early days was that as he got older people would look at him and whatever he accomplished in his life and tell us we were just lucky.

Children are unquestionably born with different abilities, but once they’re born I don’t think luck plays as big a part as is generally believed.  You work with what you have, you support what you see in your mind even if you don’t see it in front of you yet.  If I would have treated him as a child with the limitations I was told he would have, I’m sure he would be very different.

For example, Yirmi didn’t look me in the eye for six weeks.  That’s a long time for a newborn – my other kids looked me in the eye the day they were born.  So I could have assumed he was autistic (which ten percent of children with T21 are) and become discouraged that I was one of the unlucky parents who got a ‘lower functioning child’.  Then I would have treated him with those low expectations and he would have responded as such.  Or I could have thought, he has his own time schedule and believe he would do it when the time was right.  And he did.

That line of thinking follows all the way through the years when raising children – and this is true of raising any child.  They will reflect your belief in them.  A parent has to learn to see past the current challenges or limitations and trust the developmental process, especially when your child is on the slower side of the developmental curve (emotionally, socially, intellectually or physically).

Back to issue of social supports.  Children with Down syndrome are strong visual learners.  If a child spends his days with a group of children with disabilities, behavioral issues and emotional issues, he will copy those behaviors.  This is why so many children with T21 have autistic behaviors when they aren’t autistic – because they copy the behaviors of those in their special education programs.  If a child is surrounded by neurotypical children acting in a socially appropriate way, that becomes a model for him.

How a child acts is less about his disability (though it undeniably plays a part), and much more about who he is patterning himself after and what is expected of him.  Yirmi behaves similarly to his siblings and the other people in his life.

You won’t be surprised that I’m opposed to the routine isolation of children with disabilities in separate classrooms or social situations.  Inclusion been shown to be highly beneficial to the child with a disability as well as the neurotypical children in the classroom, and that this is something parents have to fight for rather than an accepted norm is simply horrendous.  It’s just wrong on every level -we as a society are creating very limiting long term realities for people with disabilities.  It doesn’t benefit individuals, families or society at large.

Avivah