A novel walking aid for our children

From "This Unique Invention
Will Allow Disabled Children to Walk
For the First Time"

A new aid for children with disabilities, the Firefly Upsee [article here] is scoring big in the media. "Revolutionary" and "game changer" are among the superlatives being used to describe it. And it does indeed look appealing and fun for both parent and child to use. (It is worn by both  in tandem).

But my jury is still out about its practicality and benefits.  It's unclear that it promotes any  progress in the child's standing and walking skills. The parental opinions quoted - all rave reviews - make the reports sound like advertisements.

But so far, no professional assessments have been cited - unless you count the occupational therapist who works for the manufacturer of the harness. (I don't).

The hitch is that the child is entirely passive while using it. Aren't other aids, the ones that spur the child's independence and initiative, superior?

Also, the harness demands total and incessant involvement from the parent every minute that the child is using it. How long can that be sustained?

At $500 a piece, it isn't the sort of item you can buy just in order to try it out.

But for us there is no quandary. While the articles didn't specify an appropriate age/size range, it seems to suit only younger children. So C. and I will just keep plugging away at our new Rifton walker.

But please let me know if you do purchase this and find it a delight. I'll gladly retract this blog post.

They call this "education"

You may remember the dumping ground at C.'s  school officially known  as "the sports room". I have repeatedly found students deposited there in swings unattended by any staff members, unrestrained, in clear danger of falling and - in one instance - half naked.

In response, I have requested from the teacher and aide that C. never be placed in any of the sports room equipment "just because..."

After finding C. in the swing several weeks later, I calmly repeated the request. I was afraid to give my reasons, namely: I suspect she'll be left unsupervised and fall and even if she were supervised it seems a pointless, boring way for anybody to spend long periods of time. (The staff tend to dump the children there for an hour or so.)

With children who can never report to parents about mistreatment, we must be wary of criticizing the staff.

Yesterday, the following sign appeared on the sports room door: "Please do not enter this room until further notice."

Could my fears of an accident have eventuated?

With that venue off limits, and with spring debuting this week, C.'s teacher and aides have resorted to this outdoor courtyard (photo above) instead. Today I found three of C.'s classmates out there alone, doing - well, precisely what the students do most of the day: nothing at all.

Siblings of children with disabilities: can we foster love?

Emma and Teddy

There is an impressive video clip, "My Brother Teddy", posted last week on the NYTimes site. Adapted from the documentary "Softening", a prize-winner in the shorts competition at the 2013 DOC NYC festival,  it conveys the love of a six year old girl, Emma,  for her severely disabled younger brother, Teddy.

Their mother, the filmmaker, employed techniques that may annoy some - my hubby was so unimpressed by its black and white, 1920's look he didn't even refer me to it. I only discovered it myself yesterday during a routine Google scavenge - and I actually liked the old-fashioned touch. (No, we don't agree on everything.)

I found the film's content poignant but also troubling. Emma genuinely adores Teddy. At one point, after listing his many limitations, she gushes: "I love him, though, a lot."

My own children, on the other hand, I can safely say, do not adore C. They are wonderful, amazing, caring, loving, sensitive, intelligent and hard-working children but simply do not have any feelings for her.

This film left me wondering whether I am to blame for my other children's attitudes toward C.

When they were young, I  never urged them to interact with her; never criticized them for their apparent indifference to her. The fact that C.'s disabilities demanded enormous sacrifices from the entire family seemed to me enough of a burden for them. I also presumed that loving a sibling with such profound disabilities is a challenge that most children were not up to.

But was I wrong? Should I have pro-actively fostered a relationship among my other children and C. Or would that have been unfair? Might it have made them resentful? Is it possible that C.'s disabilities - even more profound than Teddy's - really made loving her impossible for most children?

I'm grappling with this new facet of our angst. Your thoughts would be welcome.

Update on C.

Walking: she is doing nicely in the walker. Still no independent pushing of the walker but she stands straight and relaxed in it and takes many nice steps with her good leg, the right one. The left one bends very nicely backwards but doesn't complete the step.

Meds: Can it be that Inovelon was causing some seizures? As we near full weaning off that drug (we're down to 100 mg. twice/day), C.'s seizure tally appears to decline. Isn't that perverse?

Horror where you would least expect it

Some of the men (or "boys" as the townspeople
knew them) dressed for a performance
at the Zion Lutheran Church

An appalling tale of abuse was published ["The ‘Boys’ in the Bunkhouse"] on March 9 in the New York Times. The victims were adult men with cognitive disabilities far milder than those we are familiar with. Nevertheless, as with every scandal involving a population with disabilities, its ripples reach us and our children.

The case has myriad facets including the cruel and self-righteous perpetrators who admit to no wrongdoing; the indifferent or naive townspeople who could have intervened but didn't; the incompetent government welfare and law enforcement officials; and the legislation that still permits employment abuse of people with disabilities.

These merged elements enabled thirty years of horrific, unabated physical, emotional and wage abuse of several dozen men.

Housed in an abandoned Iowa school house, they labored at a turkey processing plant for a pittance. I must warn you that the article is a long and distressing read. The one comforting detail is that the nightmare ended in 2009 and the men were recently each awarded $1.6 million of compensation for their suffering.

The salient morals I gleaned were:

1. The man-on-the-street should meddle away when abuse is suspected.
2. Those vaunted segregated sheltered workshops - a fixture in the world of adult disabilities - need re-assessment. They may not be the "paradise" they appear to be.

A bundle of contradictions

Even non-disabled children enjoy it
(From the Hearth Strings blog)

For a girl who is categorically, profoundly, cognitively disabled, C. does several pretty amazing things.

1. Today we walked home in heavy rain and as she has done before, C. tilted her head back and opened her mouth wide to catch the raindrops. (My mouth opened too - in awe.)

2. When she is lying on her back for a diaper change, C. often lifts her bottom way up to assist me and only lowers it once I've pulled her pants on over the dry one.

3. If C. has a seizure while I'm walking her, I stop and hold her in my lap for its duration. Then, instead of resting for a while, within seconds she springs herself up ramrod straight and resumes walking, unfazed by her post-seizure wobbliness.

I'd love to be privy to some of her thoughts.

Institutionalization? Alive and well

Colin Anderson Center's Crib Ward

Many presume that the institutionalization of people with disabilities is obsolete. And with good reason. There are many countries where that is the reality. There is even a United Nations treaty - the Convention on the Rights of Persons with Disabilities - guaranteeing the right to live in small, community residences. As of October 2013, it had 158 signatories.

But sadly, the practice of institutionalization is alive and well in many countries. The following articles indicate that individuals like our children are still locked up in large, isolated facilities both in the developing as well as the advanced worlds.

In the Caucusus republic of Georgia, for instance, big orphanages have been closed down in recent years. Children have been transferred  to smaller care homes, foster parents, or their own families with community support systems in place. However,“institutionalised children with disabilities were largely excluded from this reform process. These children continue to be marginalised and abused. Without services for adults with disabilities, these children face the prospect of lifelong segregation from society.”  More about the abuse those children suffer here.

In Israel, a high-tech center, 12,500 children and adults with disabilities remain in large institutions. Some administrators of those institutions are extremely PR savvy. They work hard to present their facilities to the public and to their government as the ideal living arrangement for their residents. And their efforts pay off big time: donations and government funding keep their coffers overflowing. More about "sugar-coated discrimination" against citizens with disabilities here.