Photo by Me-Liss-A (flickr.com)

Replies continue to come in on the question posted on another forum, “If you could say one thing to your relatives about your autistic child, what would it be?”

“Have empathy,” said one respondent. “”He’s still family. Don’t forget he exists,” said another. And still another: “Open your eyes!”

“Do not be afraid,” one reply said. “Do not feel sorry for us or our child. He is the greatest gift/blessing we could ever have in our lives. We are happy we were chosen to care for this person.”

“My wonderful Aspie is now 16 years old, and we have overcome so many hurdles,” one respondent said. “If I
could turn back to yesterday, these are some of the things that I would have said: ‘It is not my lack of discipline that has made him this way and I don’t appreciate being told that is it poor parenting.’ ‘It’s okay that you didn’t invite me to family get togethers because my child is too high-strung. Someday when he is older you will regret your decision to exclude us all those times’ (and they did regret!). ‘Yes, I have to remind him to say “thank you” when you give him something. It’s not that he is spoiled, rude, or ungrateful. It’s just that sometimes he forgets our social standards.’ I couldn’t stop at just one comment either!”

With an eye to celebrities and debate: “Please stop judging our love for our child based on our (un)willingness to try every anecdotal therapy you hear about from Jenny McCarthy or Oprah.”

“Love him because he’s different,” said another. “He’s no one to fear and deserves the same love and respect as his siblings.”

I’ve always liked to think people liked me because I was different.

***

Autism Speaks Family Services has released its Autism Safety Project, which provides first responders with information and guidelines for communicating with individuals with autism in emergency situations.

Lately hormones have been on my mind a lot. “It’s those hormones,” someone seems to say at least once a day in reference to Charlie. Not only has he grown some six inches this year (that’s what Jim and I have been estimating). Physically, he is really growing up: For the past few weeks, it’s become very apparent that his voice is changing (though I still hear, mixed in with new, lower tone, the familiar light voice that is Charlie’s). At times his moods seem to change in a split second or less. I’ve been remembering back to my own adolescence and to how waves of feelings seemed to arise in me with no warning, and how these weren’t always expressed in the best of ways, as I didn’t know how to express what I was experiencing—–and if that’s what Charlie is feeling, it’s compounded by his minimal language, and especially language to describe feelings; to communicate.

It’s the hormone—or rather, a hormone—that some are pointing to as providing a way to enhance and even improve social ability in autistic persons. The hormone oxytocin is referred to both as the “trust” hormone, as it plays a role in bonding between parents and babies and between adults. It’s also called the “love” hormone, and seems to play a role in social and repetitive behaviors. The November 29th Australian reports on oxytocin as a treatment of potential promise:

….research, funded by the federal Government’s National Health and Medical Research Council to the tune of $180,000 over two years, is testing the ability of a naturally-occurring human hormone, oxytocin, to improve the ability of people with autism to recognise and react to emotions and to interact socially.

Currently, there are no effective treatments that directly tackle the complex and still mysterious disorder, although various drugs (such as antidepressants) and behavioural therapies are available to ameliorate its symptoms.

40 males aged 12-20 with an autistic disorder are being recruited; they will be given a nasal spray to use at home (This mother tried the nasal spray for her 21-year-old son with Asperger’s, with these not expected results.)

Stewart Einfeld, co-director of Centre for Autism Research, Education and Service (CARES), is quoted as saying:

“It’s one thing to say that the capacity to understand emotions is improved in an experimental setting…….It’s another thing to say that as a consequence, they are functioning better and are able to get better jobs or are living more independently. You can’t be predicting too many long-term benefits until you have done the work.”

If I may say so, regardless of whether or not “it’s those hormones,” love and trust—-love for Charlie, the love among him and Jim and me, and the trust (and faith) that we have in him and hope he has in us: These have had plenty of benefits (and more) for Charlie, and for us.

h/t to Kathy!

Today’s Sun has an interview with Emma Noble about her 7-year-old autistic son, Harry. Noble is a model and television presenter and was formerly married to James Major, the son of former British Prime Minister John Major. She talks about her despair and feelings of isolation when 2 1/2 year old Harry started to show signs of autism; when he did not recognize his own name. He’s made “phenomenal progress” now and, as she says,

“He talks ten to the dozen now and is a real chatterbox. When I think how I felt after his diagnosis it is like another lifetime.

“I felt I really wanted to know why. I was very angry, very upset. It was a form of grieving, a bereavement. But that feeling dies – the desperate wanting to blame – and what takes over is the day-to-day living.

“We have come a long way and now I can honestly say I don’t feel bereavement. Time helps things move on.

“You have to be very positive – and Harry makes that very easy.”

I have to echo Noble’s sentiments. Things have been tough for Charlie and for our family in the past—at that confusing and chaotic time of the diagnosis, all those long moments wondering if Charlie would ever talk, the struggle to find the right school for him—and still today at times. But it’s truly Charlie himself who has helped me to stay “very positive.”

And yes, he really does make doing this “very easy,” sometimes by surprising us on a sudden with some new word or skill; other times just because it means so much to look across the room and know that he’s our boy, here with us. Noble indeed notes that it was her son Harry who “‘pulled [her] out of that despair” and Charlie has always given me so much hope.

Also notable about the Sun article is that, in two photos of Harry playing with his mother, only the back of his head can be seen “to protect his identity.” I think this is important: When I started blogging in June of 2005, I posted photos of my son regularly. I’ve since felt it very important to protect his identity; hence the few photos I post are shot from the back of Charlie’s head or in a muted profile (plus he likes to wear his hood over his head, anyways). I’m grateful to be able to share about him in a public setting like this, but Charlie’s privacy comes first.

So what do you think this is?

Click on “Read more” to find out (but take a guess first.)
Read more

On leaving the YMCA swimming pool yesterday evening (Charlie jumped in fast and then asked to go on the water slides and I skipped up the steps after him; after his first ride, he was so excited that he turned three somersaults in the water and swam half the length of the pool with powerful strokes), we walked past a group of teenagers, one blondish boy and the rest girls. I was watching the SUVs in the parking lot when the boy said,

“Claire, why don’t you date any normal guys?”

I’m not sure who “Claire” is or what, to teenagers in our town, “normal” means. Charlie, noting no cars hurrying by, had stepped off the sidewalk and I quickly followed as the teenagers said snatches of “well” and “she” and “I wouldn’t,” etc..

Go Claire.

Autism now occurs in every 1 in 150 children, according to figures released in February of 2007 by the Center for Disease Control and Prevention. To illustrate what some term an “autism epidemic” (including three presidential candidates), people regularly compare the prevalence rate of children diagnosed with autism to that of children diagnosed with childhood cancer (1.5 per 10,000 children) or to the rate of children who have three diseases, “pediatric cancer, diabetes, and AIDS combined. (And you can go here to review the NIH’s estimated funding for various diseases, conditions, and research areas.)

The purpose of comparing the autism rate to that of childhood cancer and other diseases is to convey how pervasive autism has become (or seems to have become). An unfortunate side-effect is that some say that having autism is worse than having cancer. A post last year from Not Mercury addresses this comparison head-on:

For those who are new to autism, I strongly advise thinking long and hard about the similarities and many, many differences between having a child diagnosed with autism and learning that your child has cancer.

There have many been great advances in the treatment of pediatric cancers in recent years, and survival rates continue to increase as new drugs and treatment modalities are discovered, but survivors and their families will always live with specter of relapse and secondary health complications from the very treatments that saved their lives. CANCER is a scary word because most people associate the word with DEATH. Another scary word.

Autism, on the other hand, is never a fatal condition, though many autistic people may require extra help to recognize and avoid dangerous situations.

One argument offered for why “autism is worse than cancer” is that people with autism live a normal life-span, and so have to live with this awful disorder for their whole lives: These notions assume that living with autism is so awful that it’s tantamount to a fate worse than death.

It’s certainly possible to read accounts of autism like that, but that is not what you’ll read here. Life raising my son has not been easy and there’s always a lot of sad, painful, wrenching, tough moments—and like I said yesterday in reference to mother guilt, lots of happy, sappiness, fun and good times. Nothing beats watching Charlie turn somersaults in the pool or trying to wheedle me into buying four packs of sushi, or calling out “Dad’s black shoes” and running to put them by his bed.

More b5media blogs on cancer can be read at Help My Hurt.

I really think of this piece as a love story between a husband and wife, between a mother and a son and between a father and a son.”

Says playwright Stacey Dinner-Levin of her play, Autistic License, which will be performed April 25 and 26 at the Illusion Theater in Minneapolis. More from Dinner-Levin (who has an autistic child) about her inspiration for writing Autistic License:

“This play is based upon our experience of raising a child with autism - the things that happened in our family that were tragic, surreal and funny. This is the kind of stuff you can’t make up! Nobody sees what goes on in families with a child living with a disability. To me theater was the perfect vehicle to tell this story and to give voice to all families living with disability. I really wanted to open the doors, take down the walls of our house and say, ‘Come in, take a good look, and see this for what it is: the struggle of my life, along with the beauty and the joy.’”

The play offers a glimpse of what it is like to raise a child “in a world that has far too many opinions on what is ‘normal.’” Michael Paul Levin, the playwright’s husband, plays the role of the autistic son.

Dinner-Levin’s comment about the play as about a couple of “love stories”—between father and son, mother and son, and between husband and wife: This rings home most of all with me. Even on the toughest, darkest gray days it’s love and sticking together that sustain.

“…….happy endings are possible, even if they’re not quite the endings originally envisaged.”

So an article in today’s Telegraph about love and Asperger’s syndrome describes the relationship between Sarah Hendrickx and Keith Newton. The couple met through internet dating:

……the first stage of their relationship was fiery and fraught. To Sarah, Keith was ‘a puzzle’. He’d plainly state that their blissful weekends were enough for him, that he’d never live with her or even move nearer. Sarah frequently found him selfish, cold and distant. Keith found Sarah hard work, demanding and ’screechy’.

Hendrickx got a job with ASpire, an organization which works with adults with Asperger’s, and realized that Newton might have Asperger’s; he eventually was diagnosed.

Learning about AS, he says, was ‘life-changing’. Suddenly what Sarah describes as his ‘isolated, biscuit-eating life’ made sense. Keith had been bullied at school and gone through university with no friends at all. He’d had only two jobs in his life doing the same thing and two very short-lived relationships (the first at 31). ‘From an early age you try to join the world, but gradually, with rejection and not being able to understand social situations, it becomes too taxing,’ he says. ‘I wanted relationships with women but didn’t have the confidence, the tools or the means.’

Hendrickx and Newton have co-written a book, Asperger Syndrome - A Love Story.

And as for that opening description of a happy ending being possible, even if not as “originally envisaged”: This is very much how I think about life with Charlie, a good and a happily ever life—-with a lot of twists in the plot and surprise of an ending. And always, lots of love.

I heard a drawer open and noted Charlie in the kitchen, a roll of Scotch tape in his left hand. He hummed and mumbled while leaning over the counter. There were soft ripping sounds: Tape tearing. On glancing into the kitchen, I didn’t see any gigantic wads of tape accruing on the counter and went back to answering work-related emails.

Later—picking up Jim’s blue coat and various random items from the floor of Charlie’s room—I found this doily heart:

(The sparkles are where there’s tape.)

The heart had come home in Charlie’s backpack two weeks ago on Valentine’s Day. He has been occasionally putting it back into the backpack and looking at it, and the heart had gotten ripped, just like so many of my favorite photos of Charlie, in the time—a few years ago—when he tore any photo he found in half, and then into bits; there went many precious pictures of him on the merry-go-round with the happiest smile and a big baby in Jim’s arms.

The first time this happened, I took out some tape and, prompting Charlie to say “help, fix it,” carefully taped the pieces together, only to find the photo ripped apart a few hours later. Charlie giggled gleefully while pointing to the confetti he’d made. He grabbed my hand and said “help, fix!”—-and then he cried and moaned when he saw how the taped-up photo looked compared to the originals, and even more when the photo had been shredded and wrinkled and taped too many times to be fixed. Sometimes Charlie tried to tape the pieces of photo back together himself, but his long fingers struggled to measure out small enough pieces of tape and small mounds of the sticky stuff—looking like abandoned birds’ nests—littered the floor. Eventually we told Charlie that if he tore up a photo, that was that, and for years most of our photos were hidden in the darkest corners of the basement.

Slowly, slowly, Charlie has learned to use the computer mouse and to look at digital photos. He looks at regular photos now too, and without incident, and keeps careful watch over these treasures, stored in his ghost bucket.

As I inspected the doily heart on the floor of Charlie’s room tonight, I saw that the tears had been repaired by the careful application of a winding piece of Scotch tape.

That the heart, a little ripped for the wear, had been made whole again.

In anticipation of Valentine’s Day, the February 13th New York Times had an article about romantic relationships that persevere in the face of great differences—-vegetarians/vegans falling for carni/omnivores:

Sharing meals has always been an important courtship ritual and a metaphor for love. But in an age when many people define themselves by what they will eat and what they won’t, dietary differences can put a strain on a romantic relationship. The culinary camps have become so balkanized that some factions consider interdietary dating taboo.

True love does find a way, though—-I’ve been a vegetarian since I was in high school but when you’re the mother of a growing boy (I have just one inch over him still), you do end up finding yourself frying him burgers, roasting chicken, peeling shrimp for stir-fry, and boiling hot dogs. Food is love, or maybe it’s that love constantly asks us to do more, to change, to be for the needs of those we love (making hamburger patties while Charlie pushes at my elbow).

(Though I will admit that, when we’re at the Jersey shore—Jim’s favorite place—–in the summer, I do “break the vegetarian thing” and eat…….seafood, and even a mussel or two.)

In our household, we’ve learned that sometimes the best way to say something (”I love you” included) is with brown noodles (with or without the shrimp).

Bento box heart photo courtesy of Rob in London via Flickr