Pamela Merritt, 40, talked about being co-guardian with her sister of her 42-year-old brother, who has profound autism, at the Healthminder day at BlogHer 13 in Chicago.
"I was five years into the guardianship when I said 'this is for life,' Pamela of St. Louis, said. "I have to pace myself. There is no end game."
Pamela and her sister live about 15 minutes from her brother's group home, "so we can drop by unannounced and give him an active social life," she said. "If I didn't have my brother I wouldn't live in St. Louis, but he can't move and that's a sacrifice I'm willing to make."
Pamela says the greatest struggle "is to maintain his sense of worth and ensure he's participating in the community." She said he had a wonderful job that gave him a great sense of pride. "He would get up at 4 a.m. to go in at 10 a.m. When he went to the bank to deposit his pay cheque he would shake everyone's hand."
Because her brother receives Medicaid and food assistance ($160 a month), he had to give up the job. "If you work you're seen as taking advantage of the system, a freeloader," she said.
Her role as a sibling guardian is often not recognized, she said, particularly at work. "There's a huge understanding from co-workers if you need to leave work for a child, but not for an autistic man who is your brother. The guilt you feel over a sibling is the same as the guilt you feel over any loved one."
Pamela uses her blog as a place to vent about the challenges. To protect her brother's privacy, "I talk about it from my perspective: 'This is how it's impacting me.'"
For example, in this post she said: "My brother has had a rough couple of months. I can't get into the details...
"Suffice it to say he’s frustrated and letting the whole world know.
And I’m a mess.
Because I can’t cast rainbows across the sky.
I can’t fix it with a snap of my fingers."
Pamela said she relies on the support of her blog readers to help her get to a place where she can problem-solve. "I give myself permission to not be all that perfect, which is hard for me," she said. "You have to give a person permission to be human, to stumble, to cry and laugh, and say inappropriate things on Twitter."
Pamela said it was important for children to know that it's okay to sometimes be embarrassed or resentful of their sibling with disabilities. For example, she described coming home one day to find her brother outside their house in his underwear, eating an apple.
"I knew it was okay to resent my brother the same way my friends resented theirs," she said. "I get angry with autism sometimes. I wanted to be perfect as a child because I never wanted my mother to have to deal with me in addition to my brother."
In becoming a guardian "there's no way to plan for what we walked into," she said. "You can only plan to have to learn."
Pamela relies on social media tools to help cope. For example, she has a scheduled Skype chat with her brother from work once a week. When it's her brother's birthday, relatives who live too far away to attend the party participate through a video chat. And Pamela uses Google Hangouts to stay connected to her girlfriends.
With Jen Reeves, Born Just Right (back left), and Julia Roberts, Support for Special Needs (front left), and Christina Shaver (Hopeful Parents).
Today I was part of a BlogHer panel about how our online stories about raising children with special needs can build community and pull disability issues into the mainstream, changing perceptions.
I have "known" Jen and Julia and Christina in the blogosphere for some time, and it was an honour to meet these women, each a powerhouse in her own right.
Jen is an advocate for children with limb difference (I got to meet her lovely kid Jordan last night). She just did a meet-up here in Chicago that drew 45 families, including some out of state, who all have kids with limb anomalies. The message of her blog Born Just Right: We are all okay, just as we are. Jen is from Missouri, but we immediately knew someone in common: Gavin, a little boy featured in a winning photo in Holland Bloorview's Filmpossible 2011 contest. Gavin's mom blogs here: One Little Fin.
Julia's two children have a number of medical conditions and differences: vision disorder, developmental delays, kidney failure, dialysis, kidney transplants, each at the age of 8!, and therapy for the side effects of medical trauma. On top of writing her blog Kidneys and Eyes, Julia, who lives in Georgia, created a community for parent bloggers of children with a variety of special needs. She also speaks to medical students; supports families of children who are newly diagnosed with her children's disorders; shares her story with media; lobbies politicians; and sits on numerous boards.
Christina is a Chicago mom who founded Hopeful Parents in 2009. Her take-away tip this morning was about parent self-care, about how we can only support our kids if we sustain ourselves. One of Christina's sons has a serious mental illness. In addition to creating a forum for parents of children with a variety of special needs to share their stories, Christina works to remove the stigma of mental illness and raise awareness of the needs of children like her son. During a public school strike in Chicago last year, Christina spoke to the media about the impact of the loss of a structured daily routine on her son: a devastating month of hospitalization.
6:17 PM
We are at our favourite neighbourhood café.
A family of four arrives. Mom wears a long colourful sun dress, her hair in a perfect up-do. She pushes a high-end stroller. Blonde-haired boy runs to grab a table. "Don't touch" Mom squeaks when she sees the pile of dirty plates in front of him. Boy smiles and gives the thumbs up.
Mom and Dad stand in line to order. Preschooler in the stroller wears a short pink sun dress, thick dark hair (just like Mom's) pulled back in a pony. She extends her legs and throws her upper body hard against the back of her stroller. Over, and over, and over again. Bounce, bounce, bounce. The stroller, brakes on, makes little muted jumps. That thing sure is sturdy. Mom and Dad don't notice.
She looks too big for a stroller.
They are the typical neighbourhood family, well put together. Dad wears thick, horn-rimmed glasses.
Dad turns the stroller around and I can see that the girl is smiling. Happy. And drooling.
No interaction between parents and girl.
Parents place order and walk over to where boy is sitting. They sit down.
Girl in stroller is stranded in the order line (which is now empty). Bounce. Bounce.
Mom looks at Dad, a worried, weathered look on her face.
Mom gets up, goes to her daughter and unstraps her. Girl stands up and lunges toward our table. She stands right up against it, her face a couple of inches from my son's, and watches him eat. Girl smiles.
Mom grabs girl, pulls her back, hard. "Come here!" she says.
"I'm so sorry!" (to us).
Has she not noticed my son's hearing aids? His unusual features?
"It's fine!"
I want to say "I understand. I'm not who you think I am."
My chest twinges. I remember my own agitation when I brought my son here as a toddler. My radar was on for anyone who might be staring at him, noticing he was different. At the time he had an undiagnosed swallowing problem. I was petrified he'd start choking on his food. And not just because he couldn't breathe—because he'd draw attention to us, too.
My desire to blend in like the "normal" families was at its peak.
I wanted to use sign language with him, but I didn't want other people to see me sign. So I kept my hands down and busy.
Mom guides girl to their table and lifts girl up awkwardly on her lap. Girl is too big to sit in Mom's lap comfortably. Mom holds her tight.
Dad takes a full-length plastic bib out of a bag and places it on the table.
Dad walks over to another table. "Are you leaving soon?" he asks the mom, sitting with a friend and a toddler. They have the only high chair and he wants to grab it when they leave, he says.
Minutes later Dad is carrying the plastic chair to their table. Girl's long legs are threaded through the openings.
Mom's back is turned away from us.
It's time to go.
Oh boy.
It's worse than I thought.
The hatred against people with intellectual disabilities.
Three cases in point.
In January a 26-year-old man with Down syndrome suffocated to death in a movie theatre in Frederick, Maryland when he was handcuffed and pushed to the ground by three county sheriff deputies who were working extra hours as mall security.
Robert Ethan Saylor—known as Ethan—had just seen "Zero Dark Thirty" and was angry that he couldn't see the movie again. His worker couldn't convince him to leave so she went to get the car.
When I wrote about the incident in April, I assumed that the deputy called to remove Saylor didn't know how to "read" his refusal to get up.
A report released Monday shows the sheriff was not in the dark.
According to the report, Saylor's 18-year-old worker had returned, and told the sheriff that Saylor had Down syndrome; that he was angry because he didn't want to go home and would likely swear if spoken to; and that "he will freak out" if touched (he had sensory issues). "Please don't touch him," she said.
She asked the deputy "to wait it out" she wrote in her statement.
"Next thing I know, there are I think three or four cops holding Ethan, trying to put him in handcuffs."
Saylor was 5 foot 6, unarmed and almost 300 pounds. As he screamed and swore and cried for his mother, they pulled him down an exit ramp and pushed him to the ground. Some reports said they piled on top of him.
"One customer told police an officer had his knee on Saylor's lower back while the other deputies held Saylor's shoulders." Within a couple of minutes he was unresponsive. The officers rolled him over, undid the three sets of handcuffs they'd applied, and began chest compressions. He never regained consciousness.
Remember. This man lost his life over a $10 movie ticket.
The death was ruled a homicide: the coroner found signs that Saylor was lying in a position in which he couldn't breathe (positional asphyxia). His larynx was fractured and he had blood in his lungs.
I think stereotypes about Down syndrome—about people with intellectual disability being less than human—fed fear in the deputies, prompting their heavy-handed response. There's something about seeing our own vulnerability in people with mental disabilities that we can't stand, something we have to stamp down.
Why did the other 21 patrons not speak up, rush to Saylor's aid?
Why did a grand jury decide no criminal charges were needed?
Why did the deputies' attorney say the officers "did what was necessary."
Why was there relative silence from media, human rights groups—even disability organizations?
Why, given that Saylor was a regular customer, did the theatre call security in the first place?
I think it had something to do with those deeply embedded biases carried in our culture that devalue people with intellectual disabilities. That disdain for people who are slow to pick things up, a disdain we were all raised on, continue to be raised on. That negative bias—at an unconscious and automatic level—that French researchers identified in adults who outwardly said they accepted children with Down syndrome.
"We were born in weakness and we will die in weakness," humanist Jean Vanier told me, but our culture's brain elite doesn't want to be reminded of this. Its members are too busy pretending otherwise.
Second case in point.
Drake, in a new song, pairs autism with intellectual disability as the ultimate put-down: "I’m artistic, you ni**as is autistic, retarded."
Third case.
Ironically, instead of acknowledging that some people with autism have intellectual disability, and asserting the inherent value of ALL people with autism, ALL people, regardless of IQ, Autism Speaks posted this response: "These lyrics are offensive and perpetuate negative stereotypes. There are many inspiring individuals with autism and other disabilities who have achieved great success across a variety of artforms, including music."
Yes, there are many artists who have autism (some of whom have intellectual disability). There are also many people with autism who have intellectual disability and don't have an exceptional talent—artistic or otherwise—that can be sold in the marketplace.
Are they any less human?
It seems to me that in the same way that people with physical disabilities tend to distance themselves from people with intellectual disabilities, many within the autism community want to create an autism "brand" that excludes certain kinds of brain differences.
When I read about the concept of neurodiversity, I don't hear it applied to people with autism and low intelligence. I hear it applied to people with autism who have atypical, off-the-charts intelligence in an area that's conventionally valued. In other words, I hear people talk about the value of brain difference when it manifests itself in a way that can be valued commercially.
We value brain diversity, but only so far as it allows you to "do something" that can be bought and sold.
Is that a flexible way of thinking? Or is it another form of "brainism?"
Some of the greatest stigma comes from the medical profession. At a Montreal Children's Hospital conference on the ethics of care for disabled children, a neonatologist made this admission: “There is a feeling among my colleagues—an unspoken and probably unconscious bias—between physical and mental disability. Sometimes neonatologists think if you're not perfect mentally, you're better off dead."
So why, then, do people with intellectual disabilities mean the world to their families?
"As I walked up our driveway hours before he died, I never thought that it would be the last time I would hear 'Emmy’s back!' shouted with so much enthusiasm it came through the closed windows," writes Emma Saylor, Ethan's sister, in We need answers in my brother's death. "Never again will I be hugged so tightly that my feet are lifted off the floor. And on my wedding day, I will only dream of what it would have been like to see the joy on my brother’s face as he and my father walked me down the aisle, the way Ethan had talked about since we were children."
One in four children with cerebral palsy has moderate to severe pain that limits activities, according to a study published yesterday in Pediatrics.
Caregivers filled out a survey and doctors reported the presence and cause of pain in 252 youth aged three to 19 in this Holland Bloorview study.
Hip pain and tight muscles were the most frequent causes of pain “and have specific treatments,” says lead researcher Dr. Darcy Fehlings, physician director of the Child Development Program at Holland Bloorview and clinician senior scientist at the Bloorview Research Institute.
For example, regular hip x-rays can identify partial hip dislocation (called hip subluxation), which can be treated with stretching, hip abduction bracing, Botox and orthopedic surgery, before complete dislocation and chronic pain develop.
“A number of treatments exist for dystonia, ranging from oral medication, [Botox], intrathecal baclofen pumps, and, more recently, deep brain stimulation, to help prevent children from becoming ‘stuck’ in painful postures,” the researchers say.
The main cause of pain in 10 per cent of the children and youth was constipation, which can be effectively treated with the laxative polyethylene glycol.
"This study underlines the importance of asking every child with cerebral palsy about their pain levels," says Dr. Melanie Peller, a fellow in developmental pediatrics at Holland Bloorview. "This can sometimes pose a challenge for children with communication limitations, which makes a systematic pain assessment plan crucial."
10:46 PM
Yesterday Ben and Ken and I went shopping.
We started off in the basement of Buffalo to get some sale shirts. There were a couple of oversized couches facing each other. On each sat a large male mannequin (grey-tone skin) in jeans and a t-shirt, legs crossed, hands on thighs, leaning in, heads tilted, as if in conversation. Ben immediately went and sat beside one and shook his hand. Ken sat with the other.
I did a quick walk of the floor and pulled some shirts I thought the boys might like. When I came back, Ben had a mischievous grin on his face. "Where did you get that hat?" I said, noting he was wearing a royal blue baseball cap.
Ben raised his eyebrows and pointed emphatically at the mannequin's head. It was now wearing Ben's brown fedora. Ken and his mannequin had also made the switch.
On the way out Ben tried to give a female mannequin his ring. He insisted that she wanted it.
The boys agreed to wait on a bench while I went into Pink. As I came out, they were bounding toward me, big grins on their faces. "Ben wants to go to Rocky Mountain Chocolate," Kenold said. "He found it on the information directory."
Ben nodded and signed "chocolate."
I knew there was a chocolate place downstairs that D'Arcy and Ben had frequented. So down we went. The store had shelves and shelves of little custom-made chocolates laid out. What was Ben going to choose? He scanned the shelves, quickly zooming in on his target: a chocolate hedgehog (as above). I have no doubt Ben had a hedgehog on his last visit. Kenold chose a white one.
The boys ate their chocolate at the fountain, while I went into American Eagle.
When I came out Ben was eagerly gesturing that he wanted to throw his ring in the fountain. I convinced him he could throw a quarter. Water had splashed all over the ground and he was wearing his new black converse (note to self: not a good shoe for orthotics) with a huge lift on the bottom of the left shoe. I was concerned he'd go flying, so Ken and I held him as he threw the quarter in. It took him a couple of seconds to coordinate his arm, but he let it rip with great flourish.
"Toys" he signed, gesturing to a Toys Toys Toys store down the hall.
The boys went ahead to the Toy store while I grabbed a coffee. When we met up Ben was holding a Justice League package with a listing of all of the characters on the back. A sales associate unsuccessfully searched the walls for the gold character he wanted (I couldn't read its name because I didn't have my glasses).
We left with a sale item of 3 characters for $4.99.
That night as we ate at an Indian restaurant, Kenold told his sister that Ben had wanted to throw his ring in the fountain.
"Ring? What ring?"
I had asked Ben where he got the ring, which looked somewhat unisex with an illustration under a small circular glass on top.
"That's my ring! S gave it to me for my birthday. I've been looking for it everywhere."
She had no doubt taken it off at one of the computers, where Ben had found it.
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