Hard work

One of my husband's hobbies is shooting. He enjoys target shooting at the range, though he never got into hunting. He is a strong believer in the importance of 2nd Amendment rights and individual responsibility for self defense. Philosophically I agree with him, though the hobby itself doesn't appeal to me much. He took me to the range a few times, and my reaction was basically "This is fun about like Angry Birds is fun. Line up the shot, let'er rip, and see how many pigs you knocked down...."  I don't play Angry Birds much, either.

He also reads many "gun blogs".  I figured I would understand my hubby better if I followed some of them.  Some of them don't do anything for me, being overly technical.  Others I relate to better, when they deal with  the philosophical/political/social issues at hand.  One of these is The Cornered Cat, written by a mom from a distinctly feminine - and maternal - perspective.  A recent post, titled Hard Work, however, went further.  It seemed to connect in a strange way to some of the themes of my blog here.  Go ahead and read her post.  Then come back here.

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OK?  Now I will take some poetic license and re-write Kathy's post with a few, um, substitutions (in italics)....


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Learning to effectively parent an adopted child with special needs is hard work, and don’t let anyone tell you otherwise. Although anyone can learn to do the paperwork and basic care, there’s a lot more to this discipline than simply being able to keep the child alive.

First, there’s the process of getting the knowledge you need about the legal aspects of special education, therapies, and attachment. None of this stuff is intuitive. The rules for adoption and schooling are different in different jurisdictions, and those rules change all too often. The rules for caring for the child at home tend to be more stable, but that does not make them either simple or intuitive. Getting a good, basic handle on those legal questions takes some effort and some skull sweat.

Then there’s the emotional hard work of sorting out your own beliefs about adoption and disabilities. When do you think it is right to bring another living, breathing, feeling, thinking human being into your home? When is it absolutely wrong? Those are the easy questions. Here’s the hard one: Am I myself able to take the child in if that is what it takes for him/her to thrive? Under what circumstances am I willing to do that? Am I willing to do it if it is a child of a drug-addicted teenager who likely has Fetal Alcohol Syndrome and other congenital defects due to prenatal drug use? Am I willing to do it if it is someone with physical or developmental disabilities? Am I absolutely sure I want to go down that road? Am I able to face those choices without flinching or freezing?

After dealing with the legal and emotional/ethical questions, we come to the social issues. What will my mother say about my decision to adopt a special needs child, when she finds out? How will my friends react, when they find out? Am I willing to deal with the social fallout if my children’s friends’ parents learn that we have a child with disabilities? Thinking through those questions may seem trivial to some people, but many of us have a very difficult time coming to grips with those social concerns.

Then there’s the question of child behavior and psychology. Adopted children struggle with attachment in some predictable ways, but it’s emotionally draining to learn about how RAD happens so we’re better able to avoid it. We do it anyway, because that knowledge helps us and our children stay safe.  We must study how violent meltdowns happen and learn how survivors have defended themselves. Along with that, we must begin training ourselves to notice the things going on around us so we can learn how to avoid dangerous situations before they develop. That’s hard work, too.

All of that pales when we think about the sheer physical effort it takes to master the day-to-day needs of a child with disabilities. Again, anyone can handle feeding and changing a young child. But acquiring the skill to handle the child with confidence, understand how he/she works, understand how to keep him/her on-track even if something goes wrong – that’s hard. Getting to the point where we can handle the child with the same casual confidence we feel in parenting our typical, biological children – that’s hard. Learning to be patient and loving every time, regardless of time or stress constraints – that’s hard. Learning to teach the child with smooth efficiency, building the good safe habits that will see you through a tough time – that’s hard. Learning how to use cover or concealment while disciplining a child in public, learning how to move while maintaining routines, learning how to reliably do what needs to be done even if you don’t have much time, even if your vision is compromised because your glasses got knocked off – that’s hard.

After we’ve learned those physical skills, we need to maintain them. That’s also hard. Finding the time to sleep isn’t easy, and finding a competent babysitter can be very challenging indeed. Sitting on the floor at PT/OT/ST for hours while we develop the skills under the tutoring of a qualified instructor is hard enough, but having the personal discipline to force ourselves to practice the un-fun stuff as much as we practice the fun stuff when there’s no one standing there encouraging us to try it anyway – that’s hard.

Sometimes I talk to people who feel stupid because they don’t understand all of this intuitively, or because they can’t just pick up a child and care for him/her as effectively as the magical people do on TV, or because they have to struggle to master fundamental child handling skills. If you’re in that boat, please let me give you a ray of hope here: you’re normal. It’s actually normal to find this stuff hard work. It does not mean there’s something wrong with you. It simply means you are doing the work it takes to learn something challenging.

We do that work because it’s worth it. Being prepared to rescue children is worth it. Being able to protect and love children? Worth it! Having the confidence and love that makes a child's life of abandonment and neglect head the other direction – totally worth it.  Life is precious, and a child's life is worth defending.

Pre-Mother's Day Musings

The best line in this article was, "Did you know you were having him?"

This was a particularly rude shorthand for "Did you get prenatally tested so you could abort if you knew he was going to have Down syndrome?"  Which of course, is also rude.

The author mom says,

“No,” I wanted to snap at her. “It was the darndest thing. I couldn’t figure out why I was getting so fat!” Or maybe just, “Did you know you were having your son?” 

Sarcasm aside, that is actually right on the money.  We never know what challenges our children will present.  Medically, socially, academically?  How many parents are really and truly prepared for the normal challenges of a typical childhood?  

Shrek IV

My boys loooove the Shrek movies these days.  They are pretty good movies, too! Great message about looking beyond superficial appearances, about friendship and love, and so on.

I recently saw the fourth movie with them, Shrek Forever After.  The movie hinges on two decisions made in order to make problems disappear.  The two problems are worded slightly differently, but in both cases the perennial trickster Rumplestiltskin fulfills them by making the people themselves disappear, cease to exist.

There are a few different ways to interpret this.  One is the importance of each individual, our inter-connectedness and interdependence.  The other is the wrongness of solving problems by "disappearing" them.   I am reminded of the discussion at the end of "Brave New World":

"But in civilized countries," said the Controller, "...there aren't any flies or mosquitoes to sting you. We got rid of them all centuries ago."

The Savage nodded, frowning. "You got rid of them. Yes, that's just like you. Getting rid of everything unpleasant instead of learning to put up with it. Whether 'tis better in the mind to suffer the slings and arrows of outrageous fortune, or to take arms against a sea of troubles and by opposing end them … But you don't do either. Neither suffer nor oppose. You just abolish the slings and arrows. It's too easy."

In my mind, this speaks also to the modern idea of "abolishing" genetic disorders such as Down syndrome by prenatal diagnosis and abortion.   Can we do it? Yes.  If done early enough in the pregnancy, all but the most die-hard right-to-lifers would accept that it is the mother's prerogative to decide whether or not to continue the pregnancy at that point, for whatever reason.  But the long-term consequence of the sum of these decisions would be to leave our society without the rich diversity of individuals, as well as to deprive our families and communities of the growth opportunity inherent in learning to accept and celebrate these differences.  In the context of Brave New World, we are neither willing to "suffer" the disabilities by learning to accept people with disabilities as they are, nor to "oppose" them by seeking new medical treatments and educational methods to improve their outcomes.  Instead, we just make the individuals themselves disappear -- cease to exist.

Ironically, even as we embark on informal eugenics to eliminate Down syndrome, other medical issues are becoming more common.  For example, diabetes used to claim many lives before adulthood.  These days, diabetics are able to live normal lives, including having children.  Thus, they propagate the propensity for diabetes to future generations at a much higher rate than in the past.  And in fact, diabetes is far more common today than a century ago.


Do we want to "disappear" our problems, or do we want to confront them, solve them, and learn from them?

A metaphor

Somewhat related to yesterday's post, I just saw this:




Apply this to... pretty much anything you want to accomplish that requires a significant effort and commitment....?

Irony

The following facts about Down syndrome adoption:

1. There is a long waiting list for infant adoption of a baby with Down syndrome.

2. Most families adopting older children with Down syndrome already have a biological child with Down syndrome.  This means that families who are not dealing with all the extra challenges of Down syndrome are resistant to taking it on, while the families who know how hard it can be first hand are not daunted by it.

On the one hand, this is not ironic at all:  The unknown is scary, while a struggle we have already contended with is just "stuff to do".  The same phenomenon is apparent in most areas of human endeavor: Standardized exams, sporting events, presentations, and childbirth are all less terrifying the second (and third, and so on) time around.

On the other hand, those are all things which are generally seen as positives.  At least, the positive aspects of them are readily acknowledged by society at large.  Raising a child with special needs, however, is seen as an overall negative.  Sufficiently so, that #1 above notwithstanding, the overwhelming majority of women who get a prenatal diagnosis of Down syndrome choose to terminate the pregnancy.  Likewise, most families who get a post-natal diagnosis of Down syndrome go through a grieving period for their lost expectations.

Because raising children with special needs is seen as an overall negative, families who have typical children see no reason to seek them out.  The more or less unspoken idea is that "it's not our problem (thank G*d!) so let someone else deal with it".   Well, if the families with typical children won't adopt children with disabilities, then the other choices are families WITH such children or childless families.  The message is either,

"Families who already have this horrible misfortune can take on an extra helping."

or

"Families who are truly desperate for a child will be willing to settle for an imperfect child."

Neither of these messages is particularly, um, nice....  Furthermore, if you start from the premise that caring for these children is a "burden", then we should neither "dump" this burden on those who are, by this definition, burdened already, nor on those who lack the experience to handle it.   I mean, would we do this in a school setting?  Would we assign "difficult" students to a teacher who already has multiple challenges in her classroom?  Would we rather place them with a novice? Of course not!   But for the 24/7 task of parenting an ostensibly difficult child we are OK with these options...?

Aging out!

Here is a boy who looks no bigger than my 4-year-old:

No, he is not aging out of a baby house.  He will be turning 16 years old in June!  Can you imagine?  According to US immigration laws, once he turns 16 he may not be adopted by an American family.  Of course, the chances of him being adopted domestically in Ukraine are slim to none.  Most likely he will remain in the mental institution until he dies, which will probably happen all too soon, and he will be buried on the overgrown hillside in an unmarked grave.

You can see his institution in this video:


He has Cerebral Palsy and seborrheic dermatitis, but his greatest problem is clearly malnutrition and the lack of a family. He has significant delays, as could be expected, but he is a happy, smiley boy:

He does not walk or stand, and can't even use a spoon.  Is there a family out there who can help him?

Documentary project

There are many videos online of children and adults with Down syndrome.  There are many videos chronicling adoption journeys, as well as documenting deplorable conditions in orphanages.  I would like - at some point - to compile a documentary that follows a child from the orphanage, through the adoption process, integration with other siblings and progress over several years post-adoption.  I'd like it to be combined with interviews with the parents and siblings -- what went well, what was hard, what would they have done differently, and so on.  Here is a short clip that was featured on CBS last year that does the interview part, with a few glimpses into the kids' lives:




Too many of the resources online sugar-coat the difficulties, making them less than helpful.  In order to successfully make a difference, people need to be adequately prepared.  People who go in with unrealistic expectations are more likely to give up when the going gets a bit rough.