All Grown Up and Still At Home

Yesterday I wrote about 42-year-old Noah Greenfeld, whose brother, journalist Karl Taro Greenfeld has written a memoir, Boy Alone: A Brother's Memoir. And yesterday was also my son Charlie's twelfth birthday meaning that he's got one more year before he hits the 'tweens. Except that, he is an adult size-wise.

Yeah, I've brought this up a lot. One reason is because my son experienced a jaw-dropping growth spurt this year----6 inches in about 6 months. Second is that I'm 5 feet tall and that ain't gonna change (it's more like I'll end up shorter as the years pass). Jim still has a couple of inches on Charlie but, if Charlie keeps growing at the same rate---well, he won't have to jump too far to reach a basketball hoop.

So reading about how parents struggle to seek help caring for adult children in yesterday's ABC News, I felt like, um, I think I'm already there, from a physical perspective. The ABC News story is one of those grim-this-is-the-reality reports. It starts with recounting the "alleged murder" of 65-year-old Kay Barragan: She was found dead at the bottom of a staircase in her Long Island home on Wednesday; her 38-year-old son, Eduardo Barragan, has been charged with second-degree murder. Barragan had been separated for a few years from her husband, Napolean Barragan; their son, who is reported to have schizophrenia, had lived with her for his whole life.

ABC News also brings up the story of Trudy Steuernagel and Sky Walker: Walker was charged with killing his mother earlier this year. Indeed, there's been more than a few accounts of individuals with disabilities and acts of violence and against family members or those living with them.

Regarding this admittedly grim topic, I'm trying to walk a line between catastrophic thinking (and cries of "we have to get rid of dread disorders like autism because look at what awfulness can happen") and sober, realistic, and honest understanding of the situation and what is involved. Some quotes from the ABC News express what I've been thinking about:

[Clinical psychiatrist Roya] Ostovar, who's also director for the Center for Neurodevelopmental Services at Harvard's McLean Hospital, said it's not unusual for parents with disabled children to resist getting help, even when they realize their own safety may be at risk.

"Parents fear that nobody will take as good care of their child as they would," Ostavar said. "When you're in the midst of all of this, it's very hard to step back and reassess the situation and figure out that it's time to ask for help.

"The thought of handing over your child to someone else -- a stranger -- places a tremendous amount of guilt on the parent."

Ostavar said that outsiders often incorrectly assume that all parents who feel unsafe living with their adult, disabled children have no reservations about placing them in assisted-living facilities.

"It's not an easy decision," she said. "It's heart-wrenching."

Another common misperception is that as children get older they become easier to handle, even with their disabilities. But age, Ostavar said, often has no bearing on how easy a child is to control.

"Even with a typically growing child, you might think that a 2-year-old is more difficult than a teenager, but we all know that's not true," she said. "The needs of the child just change and it's the same when you have an adult child who cannot take care of themselves.

"For those children with good cognitive skills, there is a great awareness about their own disability and a sense of grief about what they cannot do as they get older," she said. "It creates a very difficult dynamic and a kind of complication, and so it's not necessarily simpler because the child is older."

Also:

Lori Warner, a licensed psychologist and director of the Hands-On Parent Education program at Beaumont Hospitals in Michigan, said that a child's size, as they grow older, is another obstacle parents must overcome.

"If your 4- or 5-year-old child weights 30 or 40 pounds and is having tantrums, you can do a lot to physically restrain them," Warner said. "But an adult who is much bigger will be a lot harder to deal with."

Warner said that as children age, managing their outbursts becomes increasingly complicated. "Parents begin to find that they're physically incapable of physically handling and emotionally handling their children," she said.

This has already happened for us. Like I said, my son is an adult in the size and strength department, and Jim and I have really had to rise to the occasion. Sometimes I wonder why in the world he had to get so big so fast but then I also think, well, good that he's relatively young though so tall, as this means we can start trying to teach him how to communicate and control anxiety and worries and panic, rather than acting out on it. And I know I've said this over and over, but we make getting Charlie to exercise and be physically active as premium items on our list of things to do every day.

The other issue that Ostavar mentions---of whether it's easier, or not, to take care of children with disabilities as they grow older---is one whose answer is in flux for me. Sure, it was simpler taking care of a much smaller Charlie who I could swoop up in my arms (and I carried him until I just couldn't anymore). Even as Charlie's gotten (way) taller, he's also understood a lot more and been better able to understand what is being asked of him.

So big questions, none of which I'm going to solve today, remain.

Sometimes, Warner said, the hardest part for parents is recognizing that they're putting their own safety at risk by continuing to care for their children. "It's something people don't want to believe," she said.

"It goes against your gut instincts and feelings that your child would ever harm you on purpose."

Sure it is. And I don't think my son is at all aware of how strong he is, and of how much force he has in his body. Up to us to do the right thing now and teach him how best to be and comport himself, in the full knowledge that maybe there's only so much we can do.

And Jim and I have already started in a whole new set of challenges---like I've said before, life raising Charlie is a journey and, though we're often weary, our stamina is better than it used to be.

All those bike rides, walks, and ocean swims with Charlie---they add up.