Friday, May 30, 2008
When everybody seems unkind
I'll give you a four leaf clover
Take all the worry out of your mind
Let my love open the door
To your heart
The desperate woman ignored the banging at the door and hid in the filthy house. The food in the refrigerator was rotten. There was a dead bird with an open wound lying on the floor. The stench was overwhelming.
But she was afraid.
Afraid to open the door.
Afraid of what the world outside might do to her eight year-old son, the beautiful boy who was stricken with autism.
So she kept him home. He never attended school. Never went to a doctor.
According to news reports, the police did finally get in. And they took the little boy where he could be clean and fed. Where he could get some help. Where maybe, just maybe, he could get better.
Of course, they took his mom to jail. No doubt, she had neglected her child in the eyes of the law. Is she mentally ill? Possibly. Is what she did wrong?
But as an self-described, overprotective autism mom I felt a twinge of empathy for this woman. Sometimes I want to shut and bar the door too.
After all, isn’t this the world where catholic priests take out restraining orders again autistic teenagers, banning them from worship?
Isn’t this the world where a kindergarten teacher instructs her class to vote on whether or not a special needs child should remain in their class?
Isn’t this the world where a Republican Congressman blocks insurance legislation in Oklahoma, declaring that children with autism will eventually “all just be wards of the state anyway?”
Isn't this the world where the director of my then two year-old son's prestigious, "Christian" preschool pulled me aside and whispered "You know, I just don't think Jack belongs here..."
No information about red flags or early intervention. No "How can I help?" Just a push out the door for him and his bewildered mom.
That was early in my journey into Autismville. I was just stepping into the shadows.
Two years later, some days they look more ominous than ever.
So much misunderstanding.
But, as Martin Luther King said, "I have decided to stick with love. Hate is too great a burden to bear. "
So I’ll treasure the flashes of sunlight like when Amy’s classmate rode home with us and went on and on about how cool it was that she actually got to ride with Jack. She’d never met someone with autism after all. So cool.
Or when Amy’s teacher allowed her to read the book she wrote about her brother to each of the second grade classes while they studied a unit called Understanding Our Differences. Amy felt like a rock star. The kids ate it up. They raised their hands high over their heads and asked question after question.
This world is imperfect. But love overcomes it all. It's a soothing balm on the injuries inflicted by misunderstanding.
Sunlight casting out the shadows....
Pouring in through the crack of the open door.
Tuesday, May 27, 2008
Friday, May 23, 2008
I was thumbing through the latest issue of Newsweek, killing time as I idled in the car line to pick Jack up from school, when a blurb about Dr. Randy Pausch caught my eye. I had seen the Carnegie Mellon professor on Oprah a few months back discussing his now infamous "Last Lecture." Dr. Pausch was diagnosed with terminal, pancreatic cancer last year. The "Last Lecture" is one of the most popular YouTube videos of all time and definitely a must-see. The Newsweek article references another, more obscure lecture of Dr. Pausch’s regarding, of all things, time management.
It’s been a crazy couple of weeks, but that seems to be the way life goes. A fierce stomach virus hit the family, creating mountains of laundry and schedule disruption. I’ve been walking around in a fog of Lysol, clutching a bottle of Purell for days.
Strange how when everyday life is thrown off-kilter, somehow the world still continues to turn. David Cook won American Idol. Hillary won West Virgina and Obama clenched Oregon. The International Meeting for Autism Research took place in London. The fridge is empty. The house is cluttered.
And it’s okay.
Today, I want to spend my time cherishing the fleeting moments of love and connection I have with my progeny.
Laughing at the drama-queen antics of second grade girls on Amy’s field trip.
Rocking out to the new Barenaked Ladies Children’s CD with Jack in the car.
I haven’t had the opportunity to watch Dr. Pausch’s time management lecture yet. I hope to make the time very, very soon…
Really, I do...
Saturday, May 17, 2008
~The Gospel of Mark 10:13-14
The Minneapolis Star Tribune reported this morning that Adam Race, a 13 year old boy who is severely affected by autism, has been barred from the Church of St. Joseph and a temporary restraining order has been filed against his parents.
The battle started last summer, according to Adam's mother, Carol Race, when Walz came to the family house along with a church trustee and "made kind of a federal case out of the situation with my son."
The church counters that it "explored and offered many options for accommodations that would assist the family while protecting the safety of parishioners. The family refused those offers of accommodation."
The Races and their five children typically sat in either the church's cry room or in the back pew to avoid disrupting other parishioners since they began attending in 1996, according to Carol Race.
No one had complained to them about Adam until the priest's visit last June, she said.
"He said that we did not discipline our son. He said that our son was physically out of control and a danger to everyone at church," she said. "I can't discipline him out of his autism, and I think that's what our priest is expecting."
The family continued attending mass, she said, trying to calm Adam and leaving during the closing hymn to avoid interacting with other parishioners on the way out.
Months later, after failed attempts to make peace with Walz, the family received a letter asking them to stop bringing Adam to church, Carol said
The family continued taking him along, however. Then, last week, Carol and her husband, John, were slapped with the restraining order. The following Sunday -- Mother's Day -- the family brought Adam to church anyway. Carol said a police officer cited her this week and she is scheduled to appear in court Monday.
A call to the parish office was not returned Friday. A statement released by the Diocese of St. Cloud said the church filed the petition "as a last resort out of a growing concern for the safety of parishioners and other community members due to disruptive and violent behavior on the part of that child."
Walz, the church's pastor for three years, said in an affidavit that as Adam has grown, the situation has worsened, and the boy has been "extremely disruptive and dangerous" since last summer. Walz alleges that Adam struck a child during mass and has nearly knocked elderly people over when he abruptly bolts from church. He also spits and sometimes urinates in church and fights efforts to restrain him, Walz wrote.
The pastor wrote that Adam's parents often sit on him during mass to restrain him, and sometimes bind his hands and feet, pulling a rope under the pew so his father can control the line from behind. Walz wrote that Adam once pulled an adolescent girl -- an exchange student staying with the family -- on top of him, grabbing her thighs and buttocks. And, at Easter, Walz alleged, Adam ran from the church, got into the family van and started it, then got into someone else's car, started it and revved up the engine.
"There were people directly in front of the car who could have been injured or killed if he had put the car in gear" Walz wrote.
Carol offered a different perspective. She said her son once brushed against a parishioner who almost lost balance. Adam makes spitting faces but doesn't actually spit, she said, and he has an occasional incontinence problem.
She and John sometimes sit on him because their weight is calming to him, she said. He pulled the exchange student onto his lap for that reason, she said, and wasn't grabbing at her.
They also use soft fleece strips to sometimes bind Adam's hands and occasionally his feet because it calms him, she said. The Easter incident occurred when Adam got into the driver's seat of a car that had already been started and revved the engine because he's drawn to engines, she said.
The family's request for certain accommodations -- such as clearing aisles when the family leaves church -- have gone unfulfilled, she said.
Tim Kasemodel of Wayzata, who met the Race family through joint autism advocacy efforts, went with his wife and their autistic son to join the Races at church on Mother's Day. "Adam's a big boy and he is intimidating because they don't understand him. Adam makes sounds like any kid, but there were babies making a heck of a lot more ruckus than Adam was."
Asks Kasemodel, "What are we supposed to do, literally lock our kids away so no one has to see this for the rest of their lives?"
And I would follow up Kasemodel’s questions with one of my own.
What would Jesus do?
I think we all know the answer to that question.
Wednesday, May 14, 2008
List ten great things about your child with autism. If you think your child would like to participate, let them express themselves. Maybe ask him or her to list a few things about themselves they would like to share. They do not have to answer in words, feel free to share photos, artwork, or upload video or audio. Anything goes, in the name of self-expression!
Just ten? Really? Glad to oblige GFCF Mommy.
1. The dimple.
2. The hugs.
3. The way he rubs his thumb and fingers together when he’s happy.
4. Singing ABC’s.
5. The belly laugh.
6. The way he likes to sleep on rainy mornings.
7. The way he says “no.” It’s one of his few, clear words and he says it with authority and conviction. Sort of reminds me of his dad. Or my dad for that matter. Elicits a simultaneous cringe and grin.
8. His pure love for the outdoors.
9. The way he runs to his room and jumps into bed after you put his pajamas on. (It would be even better if he actually slept with such enthusiasm.)
10. The way that he’s reshaped my perception of the world in such a short period of time.
Predictable list? Of course. But straight from the heart …
I hereby encourage my bloggy friends to share their top tens as well! Post your link in the comments section ...
Sunday, May 11, 2008
Of what I’m living for
If I can make you happy
I don’t have to do more
I really, really wanted to write something poignant for Mother’s Day. You know, one of those Kleenex-grabbers that ultimately would be e-mailed around the world, scoring me an interview with Oprah and a lucrative book deal. More than likely, if you’ve been living in the special needs parenting world for a while, you’ve already been Welcomed to Holland and read the infamous Erma Bombeck and Michelle Guppy odes to special needs motherhood. (If you haven’t, really, you should…)
But today, I’m not feeling all warm and fuzzy about my special needs sainthood. The reality is, I’m not all that special. I’m just a mom, stretch marks and a c-section scar included.
Some days I’m brilliant. Some days I’m downright crappy.
Some days I’m thankful. Some days I’m sad. Most days I’m worried sick about something.
So I run. I fight with my husband. I lecture my kids. I eat too much so I run some more. I work and worry and obsess, trying to solve problems that are bigger than me. I do what I can to make the world a better place.
I pray my son will somehow overcome the paralysis that precludes him from communicating.
I hope both of my children will reach their full potential. I wonder what mine actually is.
I cruelly dissect the weekly performances on American Idol with my daughter, yet hope she will be kind. I hope my children will never judge anyone because of the color of their skin or their eyes or their economic or intellectual status. I hope no one is cruel to either of them. I hope they realize the content of their character is the most important thing. I hope they don’t spend years on a therapist's couch recovering from my hypocritical parenting.
I hope they can both achieve independence. You know.. the whole roots and wings thing…
I hope when my eyes close that final time, they will remember a mom who smelled good most of the time, who they thought was pretty; who took time to listen; who planted beautiful flowers; who was a horrible cook but danced in the kitchen with them; who always looked great for her age; who screwed up and sometimes even admitted it…
Who never stopped learning…
Who had a poor concept of time but taught them the value of every moment.
Who loved them unconditionally. Who laughed at them and with them. Who pushed them just hard enough while simultaneously pulling them as close as possible.
Who loved their dad.
Who loved herself and taught them the value of doing the same.
So incredibly ordinary.
My purpose in this extraordinary life.
Tuesday, May 6, 2008
Initially, it’s just a twinge. An annoyance. A thorn in the flesh. Eventually, the weight and pressure of it can’t be ignored. It sucks the energy from my soul and I feel the need to lie down.
But I don’t. Because if I did, I’m afraid I might not get back up.
I’m carrying it around right now. It’s been there for a couple of days.
The sadness that is….
I don’t talk about it much. It makes me uncomfortable. Reveals my hidden weakness. Judith The Great isn’t so damn great after all…
I worry about what others will think. There are those who will see me as stupid … self-absorbed …unenlightened. If I was just wise enough to accept my son’s disability as just a difference to be celebrated, the creature wouldn’t visit. To them I just don’t love him enough.
Reminds me of that scene in Monty Python and the Holy Grail, where the Black Knight, whose arms have just been cut off by King Arthur’s sword, proclaims,
“It’s just a flesh wound.”
Remain calm. All is well.
Somehow, to me it feels much deeper than that… More sinister. Something beyond my control.
Then there are those who judge me for not taking the creature and morphing it into some sort of monster of rage. Someone did this to my son. For God’s sake, there are conspirators conspiring and covering up and profiting and I should be mad as hell about that.
But I’m not mad. I’ve tried to muster up the anger. Really, I have… It’s simply not in me.
I’m just sad.
Grieving a bit.
About the autism.
Now that I’m in my forties, I’ve developed a comfort level with the process. The creature comes and goes. I manage it. I grab my iPod and my running shoes and head out. If I’m feeling particularly strong, I’ll look for ways to help someone else. (Gives me a nice dose of perspective, which has always proven a potent anti-depressant.)
But sometimes the only way over is through. The iPod and the attempts at perspective fall flat. There is no self-help.
Life continues. Amy has piano. The voice mail is full. Jack has therapy. Dirty laundry multiplies.
And suddenly I realize, the uninvited guest has crawled away. I breathe in deeply and slowly release.
Sunday, May 4, 2008
It’s a rainy Sunday morning here in Massachusetts. Not much on the agenda today with the exception of visiting the potty every fifteen minutes with Jack. I also have a great deal of miscellaneous paperwork to catch up on. Andy routinely raises an eyebrow at me and mumbles something about the road to hell… Guess I should do something about that…
I’m still in my PJ’s and am contemplating staying that way all day. Coffee in hand, laptop balanced on my knees, I ran across a couple of interesting autism-related articles in the news this morning that are worth reading:
The first, “Austin Center Charts Different Course on Autism”, is a fairly comprehensive article in today’s Austin American Statesman about Dr. Andrew Wakefield and the clinic he founded, Thoughtful House. I must disclose that I have many friends whose children are patients at Thoughtful House, and I’ve heard nothing but positive reviews. I personally have never been. Jack (so far) hasn’t shown any sort of gastrointestinal distress. To date, his only known co-morbid condition is cardiac in nature, which sends us to the pediatric cardiologist. But autism is a complex disorder and the GI issues that many individuals with autism experience are painful and real.
Wishful thinking I suppose, but it would be wonderful if more of the mainstream medical establishment would acknowledge these issues and attempt to treat them. On the other hand, it would also be helpful if someone not related to Dr. Wakefield or Thoughtful House would replicate his studies.
Next, Time released their list of the "100 Most Influential People of 2008", and although I was disappointed to not have made the list, I was happy to see that Bob and Suzanne Wright, co-founders of Autism Speaks, were included. Eleanor Roosevelt once said “Great minds discuss ideas. Average minds discuss events. Small minds discuss people.” The Wright's efforts to increase autism awareness and research funding, as well as to help families via federal legislation, state insurance reform and family services, definitely falls in the great category in my humble opinion. I suppose that places me in the "small minds" category, since I'm discussing other people ...
Oh well. Finally I read an article from the opinion page of Foster’s Daily Record. Simply titled “What You Can Do to Support Individuals in your Community with Autism”, it is a list of wonderfully practical ways to do just that. It was written by Christine Guarino, Ph.D., who serves as Executive Director at The Birchtree Center, a not-for-profit organization based in Portsmouth, NH that offers specialized programs for children and youth with autism. According to the article, the organization chose its name because, like New Hampshire's state symbol the white birch, a child with autism needs to be supported by family and community to grow and flourish.
Speaking of growing and flourishing, it’s been fifteen minutes. Back to potty training for me, Andy and The Jackers.
Friday, May 2, 2008
"The mom looks like trailer park trash..still a tragic... my heart goes out to the older brother and little Ryan and his grandparents"
Thus went the comment made by “Tina” on the NBC5 Chicago forum in response to the following story:
Ryan Watson, 2, of the 1900 West Ridge Road in Gary, was behind his home when he was struck by a train Thursday afternoon, a Lake County Coroner’s Office spokeswoman said, noting that her office responded to the scene about 5 p.m. Watson, who was to turn 3 years old on Monday, was also recently diagnosed as autistic.
April Watson, Ryan's mother, witnessed the incident, NBC5's Marion Brooks reported. "There he was on the tracks, and here comes the train," Watson said through tears. "It was too close to him, and I was like, 'Please Ryan!' And he looked back at me with his pretty blue eyes -- I'm never going to see him again."
The boy suffered blunt force trauma from being struck by a train, but an autopsy will be conducted Friday, the spokeswoman said.
"She goes, 'Ryan! Get off those tracks!," said Jane Watson, Ryan's grandmother. "Before she could do anything, the train was almost on top of him. There was no way she could have ran over there and done anything. She just turned her head and fell down."
Gary police declined to comment Thursday night.
Watson's family mourned the loss of Ryan, Brooks reported. "My whole life, I loved that kid so much," said Ryan's 12-year-old brother, Rickey Baird.
You can watch the video here. I also encourage you to place a comment of kindness and support here.
I’m certain that the authorities will fully investigate this heartbreaking case. But the knee-jerk, judgmental reactions of humankind never cease to disappoint me. These are human beings. This was a horrific incident. A beautiful, blue-eyed light has been put out, his potential never fully realized.
Tragedies should never elicit trash-talk like "Tina's."
My prayers are with this family. I hope yours will be too.