1/08/2013

What's the Harm: When Reality and Wishful Thinking Clash



I'm digging around for posts people have written on what to say/what not to say to autistic people and their family members for an episode Kathleen and I are working on for The Blogger Ladies and I ran across a question by the mother of two autistic children who finds parenting them challenging and often disappointing She remarks in her question, "I once heard somewhere that the Kaballah considers children who are autistic to be on a higher spiritual level, almost like angels."


I can understand the need to find something to take comfort in. There are definitely times that caregiving for the severely disabled and the seriously ill can be challenging. I've watched hospice families work around the clock to care for their dying loved one and seen this care go on for month after month with little to no breaks. This is, indeed, a challenge, but one that is often handled with grace and dignity. Not always, true, but often enough to give one hope for humanity.


I've got my fractured days and shattered nights from parenting three wonderful but challenging children, children who have, thankfully, outgrown the need for around-the-clock care. So, I get being tired. I get being sad. I get being frustrated. I think any parent does. I've been told children without challenges are still challenging, after all.


Parenting is not a cakewalk. It's not supposed to be easy or effortless. It's hard work. It's often shooting-from-the-hip work, and we all make mistakes. We all have regrets.


But here's the reality. Our disabled, challenged, neurologically different, or medically fragile children are just that: CHILDREN. They don't need to be heaven-sent. They don't need to be on a "higher plane." They just need to be children. They need to be loved and appreciated. They aren't here to carry out some special task. They are here to be, to live, to love, to give, to lose, to grow.


The rabbi, of course, offers the mother a different take:




"You ask if your children can be compared to angels, but in fact they hold a position much higher. The rest of us serve as the foot soldiers in G‑d's army, which itself is position greater than angels. But your children are of the elite troops, completing a special task in this world. Their challenges are certainly no fault of their own, and neither of yours. On the contrary, you have been given the great merit of bringing these two elite souls into the world, nurturing them and caring for them as they complete their lofty mission. It is by no means an easy job, but G‑d only entrusts these souls into the hands He deems most appropriate."


So what's the harm in a little wishful thinking and self-fulfilling prophecy? I mean, really? Well, because when we see other human beings as other-worldly, as other-than-human, our responsibility to them shifts. It is our common humanity that links us together. We are all human, all challenged in some way, gifted in others. We all struggle. We share that common struggle, and we are none of us here to hold a "position much higher."


There's nothing wrong with keeping our feet firmly on the ground and in shifting our perspective away from one of disappointment and bitterness to acceptance and gratitude. When we make our expectations match our reality, things become a whole lot easier for everyone involved.







4 comments:

Liz Ditz said...

Thanks Kim. I'm tired and crabby so not much more to say than thanks.

Caretaking for my parents at the end of their lives took all of my resources, in a way that parenting my kids did not. Yet I could see them as fully human as they (each in their own way) dwindled away.

kathleen said...

Abso-freaking-lutely. I really loathe that line of thinking..it really pervades into everything we as humans do...There is always someone trying to elevate what ever their situation is. The world might be a much easier place if we all just said "Hey-we are all just human!" Maybe more would get done..

Eric said...

Because of the type of epilepsy my child has -Ohtahara - lifespan is extremely limited. On average two years. Even without this knowledge people who are raising a 'special needs' child are trying to cope with the fact that something is out of place, something is missing. Naturally and often in unconscious ways we well find how to compensate for this 'missing' part and just as is often the case in dreams, what is small is made larger. When we have an 'angel' as a child, (in the Ohtahara support group a child that passes has always gotten his "Angel wings") he is much more and we somehow feel compensated, we must be compensated since especially children are less able to fend for themselves, embody many aspects of a forlorn beauty and purity.
Because thinking otherwise leaves us with little in hand since the social and psychological tools we developed are inadequate for many to be able to elevate disabled or otherwise compromised children to the status of equals.
If I am optimistic I believe it may simply be an adjustment process as awareness increases, of the parents included. Less optimistically, "Angel" labels are dehumanizing and don't actually integrate the experience into our collective consciousness.

Little Gamer Mommy said...

I love this, thank you for saying this. I don't have special needs children and in a way I sometimes just want to scream at the parents of special needs children that my babies are just as special. While I acknowledge that they do have more obstacles in raising their kids, that in no way makes my child any less than theirs. I respect any parents ability to stick with it and raise a child.