LIFE IS A SPECTRUM
A couple of years ago, comedian Denis Leary (Rescue Me) published a book, Why We Suck: A Feel Good Guide to Staying Fat, Loud, Lazy and Stupid. He made some mildly funny comments like, "If God didn't want us to eat cows, why did he make them so slow? Did you ever eat a cheetah burger? No, and you never will." (With that logic, Denis must be scarfing possum burgers on a regular basis.)
He also made the following comments about autism: "There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can't compete academically, so they throw money into the happy laps of shrinks . . . to get back diagnoses that help explain away the deficiencies of their junior morons. I don't give a [bleep] what these crackerjack whack jobs tell you - yer kid is NOT autistic. He's just stupid. Or lazy. Or both."
I don't know where to begin. But I don't have to. Leary was royally raked over the coals by absolutely everyone. From the Autism Society to his own college alma mater (for which he very successfully fundraises), everyone was demanding apologies.
He's a comedian. I get that. And I've said before, sometimes autism, like everything else, is funny. His statements, though, were not. They were idiotic, misinformed, tasteless, ignorant and hateful.
But even that I could have forgiven him if he'd come out and said, "You know what? I'm an ass, and I'm really sorry for what I said. I got carried away with being funny and forgot to be a human being."
But no, his explanation, when it came, actually accused everyone else of taking his comments "out of context." Unless the context was "Everything I'm about to say is stupid," I can't imagine how the context could explain away those statements. The title of the chapter was "Autism Schmautism."
Here's what he said as a way of explanation: "The bulk of the chapter deals with grown men who are either self-diagnosing themselves with low-level offshoots of the disease or wishing they could as a way to explain their failed careers and troublesome progeny ..."
Really? This is a big problem, is it? Because I know a lot of people in the autism community in this area and I've never met a single adult who had self-diagnosed himself as a high-functioning autistic to explain away a failed career. I've known some adults that I thought probably were high-functioning autistics, but to my knowledge, they're convinced they are completely normal.
Maybe this is some big trend out in Hollywood; those of you who live there will have to tell me. Stupider things have been trends: bed head, heroine chic, Channing Tatum. Maybe the big thing at LA parties that Denis Leary attends is to stand around and pretend to be autistic. That must make for one weird party.
Or maybe Denis Leary has been in the company of parents of autistic children who are musing on the possibility that some of their own traits seem kind of autistic too. We do that. The whole puzzle of it seems so baffling that we search ourselves for signs of this disorder to try and make sense of its sudden appearance in our families.
Dave and I have spent many a night discussing this very idea that we're both a bit "Aspergers-y." I, for instance, have to read four books at once. They're stacked up at my bedside. I read exactly one chapter in each, move it to the bottom of the stack, and then read a chapter in the next. I also do housework this way -- four activities at once, and I rotate between them until they're all done. I count compulsively. I have a phobia of the telephone. And social situations. And dressing room mirrors (Ok, that's not so much Aspergers-ish as having a fear of seeing myself from behind).
Dave goes completely off the rails if he has the tiniest stain on any part of his clothing. It can be on his pants, behind his knee. And I'm not kidding: We have to turn the car around and go home for him to change.
What does all this amount to? Nothing really. It's just something we do to entertain ourselves or keep ourselves sane. Most people are a little weird if you get to know them. What is normal, anyway?
Autistic kids are described as being "on the spectrum," because autism's baffling range of symptoms, characterstics and behaviors can't be described in one succinct definition. You can be a "little autistic," though professionals don't like to talk that way. Traditional Asperger's falls at this high end of the spectrum. And Rainman is at the other end.
But we're all on some kind of spectrum. Normal, if it exists, is a spectrum. And on any given day, your point on that spectrum can change.
Happiness is a spectrum. Being in love. Sanity. Fulfillment. Being an a-hole is a spectrum and some days I get a little closer to the Denis Leary end of that one than on others.
So maybe Denis Leary knows a bunch of fake autistic people and their fake autistic kids who are using this for ...? For the life of me, I can't really see the advantage. To my knowledge the only perk that being autistic gets you is to the head of the line at Disney World, so maybe they really really like Space Mountain.
But I'm hoping that the next time he has the spotlight and talks about autism, he might focus -- instead of on this imaginary miniscule minority of people -- on the huge number of real autistic kids and their parents who are struggling every day to pay for therapy, find answers, and celebrate the smallest amount of progress. I'll grant you, that's not very funny.
So maybe he could just shut up.
Prompted by all the "Rescue Me" promos I've seen on F/X while watching "Damages," this blog post is an unnecessarily long way to say I won't be watching the new season of "Rescue Me." Because I think Denis Leary is loud and stupid.
We found a church today. At least, I'm pretty sure we have. We've been looking for a while, and talk about finding something right under your nose: We ended up at the same place where we've been attending Kindermusik every Wednesday night for the past 5 months, Good Samaritan United Methodist.
Dave went to the nursery with Billy and Willow to help ease Billy into his new surroundings. We explained to the nursery staff that Billy is autistic, and they were all just wonderful. After an initial, brief meltdown over the site of Mama high-tailin' it to the grownups' room, Billy apparently settled in very nicely. At coloring time, he helpfully shared his orange crayon with everyone, whether or not they wanted a bit of orange on their drawing and seranaded the whole class with a couple of verses of "Jesus Loves Me."
I got a glorious hour to sit in a beautiful room, sing beautiful music, pray quietly and ponder philosophical and spiritual points. It felt downright luxurious. Like a spa for Mama's soul.
There was a time when I took going to church for granted. I grew up in church with a tight-knit group of friends who went on trips together, put on plays, occasionally behaved badly and yet, were ultimately baptized into a family that was more than the sum of its parts. Church was fun -- and yes, uplifting and spiritually rewarding -- but when you're a kid, the fun is what gets you there. I always wanted my children to have the same opportunity.
When we moved to Tallahassee, we started looking for a church to call home. One of our first stops looked very promising: It was known for its extensive children's program, which was a priority to me. For a couple of Sundays, we attended, with Dave going to children's church -- a much more structured environment than Billy was used to -- with Billy. During the Bible story, Billy's echolalia (repetitive talking) continued. He was overwhelmed by all the new people and the number of structured activities; each small group quickly changed from one station to the next activity every few minutes. And he melted down.
But Dave reported to me that he was able to get it under control and felt that with a little time, Billy would settle into the routine.
The next Sunday, though, the teacher made it clear to Dave that Billy was too disruptive to the rest of the class. Ultimately, Dave just took Billy outside to play. When he told me what happened, I wrote an email to the head of education. I was upset, and I probably got a bit high and mighty in my quoting of the Bible and Jesus' words about "Whatever you do to the least of these, you do unto me," and waxing poetic about how it was supposed to be God's house and no one, certainly not a child, should be turned away.
Well, I felt genuinely mortified about 5 minutes after I sent the email. But shortly thereafter, the phone rang; it was the head of education, and my mortification couldn't come close to matching hers, she said. She couldn't have been nicer. She explained that Sunday school teachers were volunteers and they weren't always equipped or trained to handle special needs. I assured her I understood, and the last thing we wanted was to ruin any other child's experience at church. I thought we were really making headway, were really coming to a consensus. Next time, I promised I would attend with Billy; I promised to take him out at the first sign of a meltdown, and somewhat reluctantly, I agreed to teach him his Sunday school lesson by ourselves, in the hallway, so that his echolalia wouldn't disturb the other kids' lesson.
Then before we hung up, she said something that completely changed my mind. "Of course," she said, "I still can't promise you it's going to work."
You can't promise me it's going to work? If it doesn't, then what? We get expelled from church? Really? Ah, just forget it.
Compare that with the response I got from a gentleman at Good Samaritan today: "If we're doing our job right as a church," he said kindly, "you and your son will always feel at home here. No matter what." I admit it: I burst into hysterical tears. Great impression on the new congregation: Mascara smearing everywhere. I'm trying to talk and say, "I'm not usually like this," (If you know me, you know that I actually am just like that, and just lied to my new church), while snorting and wiping my nose. Lovely.
Everyone was so kind. The pastor even said that she had just this week spoke to someone about starting a special needs Sunday school. I assured her there was such a need for it. I'm sure there are plenty of families with special kids who could use the spiritual support of a church family -- not to mention an hour of real, literal peace.
If you attend some house of worship, I'd really love to know how it handles kids with special needs. If you don't know, could you do me a favor and ask someone? I have a couple of reasons for asking this favor: First of all, I'm curious about the various ways this is handled and looking for ideas. Secondly, I think that the more people ask this question, the more likely the issue is to be addressed.
I know most places probably haven't addressed the issue simply because they don't have any special needs kids in their congregation. But that's one of those chicken-egg scenarios. Maybe there aren't any families with special needs in the congregation because attending is just too hard for them.
Again, I'm not trying to give financially- and manpower-strapped churches, synagogues, and their ever-dedicated volunteers a hard time. Not in the slightest. If anything, most of us parents of developmentally challenged children really wish our kids could fit right in, without any special accommodations whatsoever. I hate the idea that anybody would think we expect them to remake Sunday school for Billy -- but would it be OK if he just walked around during story time, while listening, rather than having to sit perfectly still? We'll go with him. We'll keep him from dismantling the carefully put-together Lego Noah's ark and try to keep his singing contextually appropriate (he's just as likely to launch into "The Gambler" as "Jesus Loves Me").
Because let's face it: When it comes to spiritual growth, we all have special needs sometimes.
I keep wanting to stop writing about Jenny McCarthy, and the crazy just continues. More on that later ...
First of all, I'd like to report that Willow had her one-year vaccinations yesterday, and suffered no ill side effects. I gave her a half-dose of Tylenol in case the injection sites hurt her, but she didn't run a fever, certainly didn't have any seizures or weird reactions, and celebrated her milestone by saying a new word today: "GO!" a command she delivers imperially with an energetic pointing forward of the finger. She's taking this whole "Princess" thing a little too seriously.
And speaking of the Princess/Fairy Tale birthday party, it was an enormous success. Willow had the time of her life, despite not being able to take a ride on the roller coaster or jump in the trampoline with the other kids. But a greater incentive to start walking I couldn't imagine.
I was ambivalent about the whole princess theme to start with. As Dave pointed out, staring at this giant poster of Disney princesses that adorned our living room, "Their wrists are bigger than their waists." And they're all built like Playboy bunnies. Even Tinkerbell has received an "extreme makeover," which seems to have included a trip to the plastic surgeon.
But you don't have to look much further than the covers of magazines that adorn every newsstand to realize that our daughters could do worse than to look to Disney's fairies and princesses as role models. Modern princesses like the mermaid and Pocahontas at least seem to be capable of solving their own problems, unlike poor insipid Cinderella and Snow White. And as for Mulan, she kicks booty. Of course, Mulan doesn't make it on to the Disney princesses mega-poster. But Sleeping Beauty does. And she spends most of the story asleep.
At least she's not getting drunk in night clubs, falling out of limos and uploading sex videos of herself to the Internet. It always disturbs me to see how many little girls turn up to a Paris Hilton book signing or want to meet Hugh Hefner's "Girls Next Door" when they do a public appearance. Really. There are mothers who drive their tween daughters to a Playboy event. Apparently, there are even parents who buy stripper poles for their little girls.
So in light of all that, I guess I can grit my teeth at the whole Disney princess thing for a while. We still have the mega-poster up in our house, because every time Willow passes it, she points, smiles and says, "Ooooooh." Ariel's her favorite, and by the time she realizes that "mermaid" is not a potential career path for her, I will have had plenty of time to woo her with the stories of cool ladies like Madame Curie, Harriet Tubman, Florence Nightingale and Eleanor Roosevelt.
In fact, March is National Women's History month, so it's a great excuse for us to talk to our daughters about remarkable women, whether those women are famous historical figures or phenomenal ladies in their own family or friends' circle. They may not wear a tiara or ball gown, but our hard-working mothers, teachers, nurses, female police officers, political leaders -- deserve crowns for what is probably, on most days, a thankless task.
And speaking of role models, I have another reason that Jenny McCarthy should not be a spokesperson for anything but Crazytown. Apparently, before this former Playboy model became the spokesperson for the anti-vaccination crowd, she was the host of a website called IndigoMoms.com. This site was for people who believed their children were "Indigo" or "crystal" children. Indigo children, they claimed, are the next evolution of humanity.
I quote from the archived website: "Indigos are extremely bright, precocious children with an amazing memory and a strong desire to live instinctively. These children of the next millennium are sensitive, gifted souls with an evolved consciousness who have come here [my note: From where???!] to help change the vibrations of our lives and create one land, one globe and one species ... You can have the Aura of your child photographed (white t-shirt in front of a white wall is best) and analysed to see which type your child is." Really. Now, I believe my son is extra special too. But I don't think he's from another planet. Jenny McCarthy, though, may be.
There was a column from an "angel therapy practitioner" (Ask the Angels), one written by a "certified Indigo healing facilitator," as well as one written by McCarthy herself, in which she describes the day she found out she was "an adult Indigo." The angel practitioner, McCarthy claimed, had a direct line to the Archangel Michael. I am not making this up. In the words of one guy posting on the Science-Based Parenting blog, "This is what happens when hippies find the Internet."
So anyway, when her son was about three years old, Jenny McCarthy believed he was "a more highly evolved species." But if you hear her interviewed these days, she claims that something was "wrong" with her son immediately after his 18-month MMR jab. No mention of the impact that vaccinations had on his aura. No mention of how his autistic traits were actually signs of his more highly evolved soul.
Up to 2007, McCarthy was still promoting this nonsense. Eventually, when she decided that her son was, in fact, autistic and that vaccines were to blame, McCarthy shut down the Indigo site and distanced herself from this kooky group.
So just keep all this in mind if you ever find yourself slightly swayed by any arguments Jenny McCarthy makes. She was just as passionate in her support of building schools to support students' auras and communing with the Archangel Michael through her angel therapy practitioner.
Just because she's been on Oprah doesn't mean she's qualified to give medical advice. Former English soccer player David Icke believes the world is run by giant lizard people; he got interviewed on a LOT of talk shows. But I'm not going to be calling him up for tax advice next month.
Boy, talking about vaccinations is like stirring up a hornet's nest. I've gotten some really interesting emails in the past 24 hours.
Yesterday, I blogged about my decision to vaccinate my kids. And the fact that Jenny McCarthy really really irritates me, because she rejects any science that conflicts with her personal opinions and accuses mothers who don't agree with her of not being willing "to do what it takes" to "cure" their kids' autism. I said that makes me want to punch her in the mouth, though she'd probably beat me up. Then several of my Facebook friends made some interesting comments, including several offers from some of my women friends -- beautiful, smart women whose input I regularly rely on -- with offers to beat up Jenny McCarthy on my behalf.
I joked that it sounded like a Pay-Per-View event, and we could air it as an autism fundraiser: Foxy Boxing for Autism. And various moms -- as well as women who just dislike Jenny McCarthy -- could take turns punching her in the mouth and explaining science to her. And another friend pointed out that one of the spokespeople for Autism Speaks was going to be on Celebrity Apprentice, so maybe we could get The Donald involved.
Last night, emails start rolling in. Apparently, some people didn't realize I was joking. And I'm flattered that you think I have clout to put such an event together, but I really don't think I could convince Donald Trump to get involved -- much less Jenny McCarthy. And no, I don't actually believe that Foxy Boxing for Autism is a good idea.
I probably did get a bit caught up in the exchange and come across as being a bit glib on the subject, when in fact, I'm not glib at all. I'm irritated, frustrated, often angry, sometimes scared and exhausted by the vaccination debate, but I'm not glib.
However, I refuse to stop laughing just because I have an autistic child. And this may shock some people, but sometimes autism is funny. We don't laugh at Billy, but we laugh about the things both are children do -- just as parents of normally developing children laugh. We didn't give up the right to smile when we had a child with special needs. We don't walk around with wounded expressions on our faces all the time, taking offense at the slightest comment. What a miserable life that would be.
Someone did make a good point though; one commenter pointed out that I claimed I wouldn't judge people who choose not to vaccinate their children -- when, in fact, my entire blog post was a judgment against said decision.
I'll give you that one. Saying, "I won't judge you," sounds good, but it's a lie. I'll say that I try not to be judgmental, because I know how hard it is to make any decision about your kids' health, to follow through, especially if your decision flies in the face of known science. But that is not what I judge you for.
No, my judgment -- and yes, it is there -- comes when you expose other people's children to risk. Some of those kids might not be as strong as your child. They might not be old enough yet for certain vaccinations and increasing their risk of exposure to disease should not be your right. So think about that the next time you go to the Health Department and tell them you're Amish so that you can get exempt from vaccinating your kid. You're making a decision that will affect all of us.
Now I'm done talking about this. It's tiresome and I've heard all the arguments a million times. So if you have any more to say about the evils of vaccination, please email Jenny McCarthy instead. And while you're at it, ask her if she's interested in Foxy Boxing for Autism.
It's time for Willow's one-year vaccinations. No mom likes "shot days," but for the parents of autistic children, it's particularly fraught with stress.
Despite overwhelming scientific evidence that there is no link between vaccinations and autism, the debate continues. Court cases continue. The number of parents opting out of vaccinations increases and the cases of measles and whooping cough increase.
I understand the fear. There are times I feel it, strong and heavy on my chest, pressing me to make judgment calls that conflict with my rational brain.
But that's not how I make decisions for my kids. If I did, I would never let them out of the house. The world is teeming with scary "what ifs?"
No, my kids, even my autistic son, will be vaccinated.
There was a time when I believed Billy's problems started at about 15 months. It's a fact that he said a few words at 11 months, and by 15 months, he had stopped almost altogether.
However, having a "neurotypical" daughter -- that's what we say in the special needs community to avoid using a meaningless word like "normal" -- I realize all the things Billy didn't do much earlier. He never pointed -- still hasn't, actually. He never handed me things and then asked for them back. His babbling, unlike Willow's, didn't sound like attempts to communicate. The sounds were more repetitive. And getting our attention -- or giving us his -- was never high on his agenda.
I'm fairly certain Billy's problems were there, in one form or another, from birth. Those challenges are just easier to identify as kids get older. Their differences from their peers are more apparent, because more is expected of them.
I'm quite literally tired of the vaccination debate. But it's a familiar tiredness. It's the same weariness that threatens to swallow me when I face many of the questions about autism: Is this therapy or that therapy actually doing anything? Is he making gains or am I just wanting to see improvements? Does this new treatment have any science behind it or is someone else just after our money? Do I need to invest the time and energy in educating myself about some new breakthrough -- or can I bribe Dave into reading about it?
We're willing to try anything. We've tried the gluten-free, casein-free diet. We've done Therapeutic Listening, music therapy, weighted vests, brushing therapy (imagine brushing a horse and then insert the image of a ticked-off three-year-old into your vision), fish oil, magnesium supplements -- there is no investment, financial or time-wise that we are not willing to make. We would happily bankrupt ourselves to save our child. I have taken a break from my career to be a full-time mom, and that has been the best decision I've ever made. Every spare minute we have we happily offer up to our babies with joyful hearts.
So when Jenny McCarthy goes on Larry King or Oprah and says that she "cured" her son's autism because she was willing to "do what it takes," I'll be honest, I want to punch her in the mouth. And I'd probably get beat up because she kind of scares me.
But she should know that my son's not still autistic because we weren't willing to do what it takes. We are. We so are. I have tried things (yep, brushing therapy) that would have made me laugh out loud a year ago. I have invested in things that two years ago I specifically said I would never try. I will not judge you for trying anything -- as long as it's not harmful -- to save your child.
So I'm not going to judge you if you decide not to vaccinate your children. I just want to put my position out there, because if there's some mom who is being pressured to avoid vaccinations and wants to hear from someone from the other side ... well, here I am.
I've read the science. I've debated the topic with my husband, with other moms, with therapists and doctors. I've wracked my brain and spent many sleepless nights sifting through the facts, the emotions, the fears. I've sought the opinions of friends and strangers in the medical and science community. I've listened, I've argued, I've questioned, I've read. And I've come to a decision.
If the science changes or evolves, so will my opinion. And if you'd like to discuss my reasons further, feel free to contact me. But not on Wednesday, because that's the day Willow's getting vaccinated.
Willow turns one on Sunday! I can't believe it's been a whole year since one of the best and worst days of my life. Oh yeah, I'm not going to lie to you. Labor was horrible; there was nothing beautiful about it either time for me. And there are still times when I look at my children's beautiful, giant heads that I get a cold shudder down my spine.
My sister used to joke that I was the Grinch Who Stole Pregnancy, but I felt like there was enough propaganda out there about the beauty of the experience; it was my job to be a living, breathing example of pregnancy's ugly dark side. I gained weight from the top of my head to, quite literally, the bottom of my feet (I went up a size and a half in shoes, and even after losing the baby weight, my feet are still as big as Christmas hams); I had non-stop morning sickness and was so hormonal that when I wasn't crying, I was breaking something ... on purpose.
But that is behind me, and my little WiFi is a daily source of hilarity and real inspiration to me. Until she came along, I didn't realize the things that Billy hadn't done as a baby. She hands me things. She pretends to talk. She learnes new words every day. Her vocabulary now includes "Mama," "Daddy," "BEE!" (Billy), "baby," "cat," "up," "ice," "buh-buh" (bottle), "Nan," "Pop," "bye," the list goes on.
And one horrifying profane word that I cannot print in this family-friendly forum. She didn't learn this word from us. This word is not one that gets spoken in our house or even when we get cut off in traffic.
No, this word is a strange example of how children learn to communicate. Willow plays with sounds, and two of her favorite words for a while were "cat" and "cook-cook" (cookie). Well, she kept playing around with variations on these words, changing the vowels around -- "cot," "bok" ... you see where this is going -- until she hit on just the right word to make Mama pop her head up and shout, "What did you say?!"
Well, it doesn't get much better than that reaction to Willow. Somewhere in her little brain, she logged this as the word that gets Mama's attention. And it does. I can't help it. I know the right reaction is to ignore it completely, but I'll be honest with you, if we're in public, I give her anything she wants to shut her up.
Yesterday, I was pushing her around the party store in the shopping cart; I had decorated her in this adorable little "Birthday Princess" crown and sash and she was smiling and happily shouting her new favorite word over and over again. People were giving me looks. So I started saying, "No, you can't have a COKE," in the hopes they would buy it. Or, "Oh, you want a COOKIE? No problem; here ya go." And she tossed the cookie down and shouted the word again. I just got out of there before anyone could call Child Services.
By the time she was born, we were already pretty sure Billy was autistic, even though we hadn't received the official medical diagnosis yet. At that point, his verbal skills were still very limited, so we didn't know how bad things would get. I didn't know if he'd ever learn to communicate and be independent or if he'd need care the rest of his life.
These days, we're very confident about the progress he's making, and feel very optimistic that within a couple of years he's going to be very close to his peers in development. But a year ago, I looked at my baby daughter and thought, You'll still be with him when we're gone. You're so small and already have such a big responsibility. I have known adults who care for adult siblings with special needs and they are unsung, uncelebrated, often unappreciated (sometimes even by those they care for) heroes.
So a year later, it does my heart good to see Billy pull his baby sister into his lap. When she sees him, she shouts, "Bee!" and "Up!" He smiles, hugs her and holds her, wrapping his big lanky body around her. When she's in the tub he says, "Willow, close your eyes. I'm going to wash your eyes," imitating the things I say to him when I wash his face. And then he gently helps me wash her hair and brush it.
It never occurred to me that he would take on the responsibility of looking after her so quickly. But he's the big brother. She's the baby sister. And with any luck, they'll spend the rest of their lives looking after one another.
Billy was bawling his eyes out yesterday, faced pressed to the front window as his new play date and his mom pulled out of our driveway. "He's gone! He's not here! EJ, where are you?" The "you" is a long heartbroken wail. "He's not here and it's my birthday!"
It's not Billy's birthday. That line came straight from a book called Little Bear. But the emotion is real. He made a new friend and watching EJ walk away at the end of the play date was devastating.
My heart ached, and I had tears in my own throat. I also recognized that rising panic that I feel when confronted with a parenting problem I'm worried can't handle. I looked at him and it was like staring in helpless horror as an injured baby bird flailed around in the middle of a busy intersection. No amount of organization, careful study or regular therapy will ever protect my baby's heart from being broken.
Most people are more familiar with the unemotional side of autism, and we get that sometimes. It's almost easier to deal with. When I pick Billy up from school some afternoons, he's clearly waiting for me. But when he sees me, his first response might be a blank stare. And then suddenly, his face will break into the most brilliant smile and he'll run at me, arms in the air. And at the last minute, rather than throw himself into my arms, he does what we call "the drive-by:" he breaks away and runs in the other direction. It's almost like the emotion of the moment is too strong. He has to back away, size up the situation and then come at me again. It might take three or four tries before he finally accepts my embrace, but when he does, it's whole-hearted. He feels very deeply and sometimes it's too much for him.
When the anticipation of a moment is too strong -- maybe it's a tense moment in a book or TV show he knows very well -- he'll sometimes put his fingers in his ears. Anything to dull the sensory overload, it seems. Like he'll feel it less if he can't hear or see things as clearly. I think we all have moments like that in our lives, when we'd like to put a hazy filter on things, to tone it down just a bit. Billy's heartbreak over the absence of his new friend was one of those moments for me.
Then I snapped out of it. My son may be autistic, but he's no injured baby bird; he's smart and strong. He can handle this, and so can I. "Find Mama's eyes," I told him, and after a last doleful glance at the empty driveway, he turned his tear-stained face up to me.
"Find Mama's eyes," he repeated and then wailed again, "EJ is gone! He's not here!"
"Yeah, I know," I agreed, giving him a big hug. "But he'll come back. He's coming back on Sunday for Willow's birthday. And you'll see him at school, at lunch and on the playground." EJ goes to the same school, but is in a different pre-K class.
"He's not here. He's gone," he says again, but he's not crying now; he's thinking. "He's not here and it's my birthday." But the gears are working in his brain; you can almost watch them move. "Willow's birthday," he seemed to correct himself, and something clicked. "Where's Willow?"
Good point. Crap, where is Willow? In the midst of the drama, I momentarily forgot all about my one-year-old.
We find her playing happily, as usual, in her play yard. She looks up at her brother, squeals with delight, and holds up her arms. "Up!" she shouts. Instead, Billy climbs in the play yard with her. He wraps his arms around her and squeezes, maybe a little too hard, but she's a robust little thing and loves every minute of it.
I watch them play together, arranging figures and furniture in the doll house, and thank my lucky stars that there is no filter on what I feel.
One of a parent's biggest fears for their child with special needs is how other children will react to him. Will he have friends? Will he be bullied? Will he spend a lot of time alone? How do you pave the way for him to create strong bonds with his peers?
Since We're Friends, a children's book by Celeste Shally, beautifully illustrated by David Harrington, is a lovely way to do just that. An unnamed child has a friend named Matt; Matt is autistic and sometimes reacts differently to situations that arise on the playground. Matt's friend helps him understand instructions during games and distracts him when he gets upset. They share many common interests; Matt talks a lot about animals, but his friend doesn't mind because he likes animals too.
We donated a copy of this book to Billy's pre-K class where we're happy to report he has quite a few friends. Ages 3 to 5, his classmates vary widely in their development. We were delighted that he would be in an inclusion class, half of which is normally developing children. Some of the older girls are particularly sweet to Billy, holding his hand during line-up, engaging him on the playground and generally watching out for him. When he started preschool last summer, Billy's social interactions amounted to, at best, "parallel play," playing with toys alongside other kids without really interacting with him. In less than a year, he has started seeking out other kids to play chase, hold hands or share a ball.
As positive an experience as this has been for Billy, I think it's good for normally developing kids to have the experience of interacting with peers of varying abilities as well. Learning patience, compassion and seeing first-hand that someone who is different can still be a fun and beloved friend -- well, I think those lessons are at least as important as reciting the alphabet and counting to 20.
As parents of special needs kids, we often debate how much to talk about our child's challenges. We fear stigma, expect judgment, and desperately want to protect our children. Dave and I went through this same debate, not wanting other parents or kids to assume things about Billy that aren't true: that he's weird or violent or any number of other myths about autism that are widely prevalent. Ultimately, though, we decided the best defense was a good offense, and that we would err on the side of too much information, rather than too little.
The only way to dispel myths is with hearty dose of reality. Books like Since We're Friends are a good place to start.
I sat in the corner of the speech therapy room yesterday, holding my breath. Billy was cradling a baby doll. He carefully dipped a washcloth into a tub of water and then dabbed it on the "baby's" head. A small trickle of water ran into its eyes. "She needs a towel!" Billy informed us. "Wipe her eyes!"
And he did. Then he laid the baby down, covered it with the towel, and began to recite Good Night, Beach, one of his favorite bedtime stories. He reached for the toy bottle and gave it to the baby. Then he reached for the toy juice bottle and mimed pouring it on the baby's head. We all laughed, including Billy. So he did it again.
I couldn't believe it. My child was engaging in normal, imaginative play. When offered three choices -- a toy farm, Playdough, and the baby doll -- he chose the baby doll and acted out routines with which he was familiar: bath, story time, bedtime, feeding.
This is huge for us. It was only a few months ago, when we started Floortime therapy, that the most interactive play I could really get with Billy was opening and closing doors with him. We did a lot of opening and closing doors.
He liked his toy fort. And he liked his toy barn. But mostly what he did with them was open and close the doors. If I tried to introduce some of the toy figures and engage him in interactive play, he would just turn his back on me and move on to something else.
When I questioned my fellow Floortimers -- a Yahoo! user group composed of parents, caregivers, therapists and others who are engaged in Floortime therapy -- about it, they advised me, rightfully so, that he simply wasn't ready for this level of play yet. Take it back down a step, they advised, follow his lead, and then work your way back up.
So we opened and closed doors. And Dave created a game called, "Open the latch, Daddy!" He placed his hand on the door, making it impossible for Billy to open until he asked for it. We opened and closed doors on the fort. And eventually, we had the Mickey Mouse character demand, "Open the latch, Billy!"
Slowly, Billy started allowing us to introduce the toy figures into the fort game. Then one day, I caught him acting out, word-for-word, an episode of Mickey Mouse Clubhouse, using the fort and the toy figures. When I tried to join in, he backed away. But after a week, he'd let me play too, to assume one of the characters, as long as I didn't change the story. There are not words to describe how much I came to hate the episode, "Mickey's Color Adventure." I dreamed about it.
But then one day, something clicked and Mickey was forgotten. Instead, all his figures had a jumping contest. Uniqua from the Backyardigans won almost every time, for some reason. "Yay! She did the highest jump!" he told me. And Batman was universally crap at jumping. Puff the Magic Dragon won a couple of times, but he had wings, so he was kind of cheating. Day after day, we had jumping contests on the fort.
He began to call the figures by name: Mickey Mouse, Uniqua, "the dragon," and for some reason, known only to Billy, one of the plastic Little People, a blonde girl wearing a hat, introduced herself to the others as, "Hi, I'm Uncle Wes," in a deep, gruff voice. I have no idea why he decided this character was his Uncle Wes, who is actually tall, dark-haired and bears absolutely no resemblance to a blonde little girl, but nonetheless, in our house, Uncle Wes she is.
And for the first time in the past two months, he developed an attachment to a stuffed animal, a stage most children go through at a much younger age. Tah-Tah is named after the teddy bear in the cartoon "Ira Sleeps Over," and Tah-Tah sleeps with Billy every night and travels with Billy to Nan's house whenever he "sleeps over." In the last couple of weeks, Tah-Tah has been joined by Eggbert, a large colorful catepillar; Too-Too, Tah-Tah's little brother; and Eeyore from Winnie the Pooh. Each has a place on Billy's bed, and both Mama and Daddy have to kiss them all goodnight each night. I can hear him talking to them over the baby monitor sometimes, telling them stories and singing them songs. Sometimes, he tells them, "Too-too! Quiet! It's night-night!"
I know all this probably sounds like mundane childhood play to the parents of normally developing children, but to put things in perspective, a year ago, Billy was running over the baby doll with his Big Wheel, and he rarely said anything that wasn't repetition of a book or TV show.
In addition to practicing Floortime at home, both Billy's speech and occupational therapists at Tallahassee Memorial Hospital take a developmental approach; both are Floortime-trained. So his therapy sessions look a lot like play -- in fact, they are play -- where we try to create the desire to communicate, rather than teach him specific phrases to parrot without understanding their meaning.
We are so excited about Billy's growing interest in imaginative play that we keep adding things to his strange little town that includes a medieval fort, a carnival, an airport, two farms and a train station. It's kind of like a soap opera town. And now he also has a little play house with a Mama, Daddy and baby that allow us to act out routines and social situations and practice things like saying, "Hello" and "goodbye."
When I was looking for a doll house online, I found tons of sites where parents were demanding to know whether playing with a doll would turn their son gay. Seriously. When I was a kid, one of my favorite toys was a Easy-bake Oven, and I certainly hope my son has a stronger interest in babies when he grows up than I now have in cooking.
But after Billy had bathed and fed the baby and put it to bed, he had the baby jump back up and announce, "Baby wants to play barn!" So we took out the barn, and the cow, horse, sheep and chicken had a jumping contest. The cow won.
If an elementary school music class and Floortime therapy had a baby, it would be Kindermusik. I've written before about what fans we are of this program, but having been through an entire semester now of Family Time at Good Samaritan Arts, taught by Jaci Niks, I can be more specific about what is special about Kindermusik -- particularly for kids with special needs.
Kindermusik isn't designed specifically for special needs kids; the classes are available for all children from birth to seven years old. But where a traditional, highly structured music class or lesson might be impractical for an autistic child, or a child dealing with any kind of developmental delay, Kindermusik provides a positive, flexible environment, while still encouraging development of real skills through hands-on participation.
We participate in the Family Time class, which has a mix of ages and allows Billy and Willow to interact in the same class. Like Floortime therapy, Kindermusik supports the child-led philosophy. So while the teacher provides a certain amount of structure, with activities and songs selected prior to class, there is plenty of room for individual expression and creativity. From playing with rhythm instruments and scarves to rocking and listening with Mom and Dad, the activities encourage exploration and family bonding.
Take-home materials include CDs with each unit's music, a set of rhythm instruments (like egg shakers or wood blocks), copies of the books introduced in each unit, a puppet, a game, and a parent's guide with activities you can continue at home to reinforce the new concepts introduced at Kindermusik. Both Billy (age 3 1/2) and Willow (1 year) love and respond to the music. In fact, we hadn't originally planned to enroll Willow in the class, but she had such a positive, joyful response after a visit at 6 months that we decided to make Kindermusik true Family Time once a week.
Some of the music may be familiar to you. In our first unit, we worked with versions of "Row, Row, Row Your Boat" and "Ring Around the Rosey." Our parent's guide explained the origins of these songs, which I'd never known. We also learned new songs like the beautifully restful "Shalom Haverim," which has become a favorite calm-down song, and "Bubbles on Me," which Billy sings every time we blow bubbles. There are traditional American folk songs, music from around the world, such as the beautiful Nigerian Boat Song, and original tunes.
Activities during each class include a "Hello" and "Goodbye" song, a great way to reinforce social skills, a "Family Jam," when we all get to grab various instruments and play along with the music, story time, active listening, and a whole lot of various types of movement. We might be asked to listen for a particular phrase in a song, like "Hands all around, Jing Jang," and when we hear that phrase, we all run together and join hands for a circle dance. We might practice walking slow during the slow beat and jumping fast during the fast beat; or we might wave our scarves up high during the major key and wave them down low during the minor key change. Even if they don't undestand the terminology, you'll be amazed how quickly children pick up on things like key change and rhythm variations.
When we started the class, Billy mostly ran around and around the room non-stop. Our teacher, Ms. Jaci, taught me to let him be. I learned to follow his lead and bring the music to him if need be. Fairly quickly, he saw the advantage of joining the group and getting his pick of instruments. He loves to try out new rhythm instruments, particularly those that allow him to bang stuff with a stick -- and luckily, there are a lot of those.
All of our jaws dropped one night when he grabbed a wood block and started beating out a complicated, syncopated rhythm in time with the recorded music. He knows every song and poem by heart, and it always makes my heart swell to hear him reciting "Happy Little Me," which he learned at Kindermusik. He now loves to join the group for circle dances and playing with the parachute, and at the beginning of each class, he grabs all the stuffed animals lined up along the walls and sets them out on the story blanket for the hello song. Because obviously, they need to participate too.
I can only speak to our experience, and I believe we are truly blessed to have a phenomenal teacher in Ms. Jaci who seems to have a magical way with children of all developmental stages, and we have a great place to go in Tallahassee with Good Samaritan Arts (which also offers all kinds of dance and music classes to kids and adults). But the great thing about Kindermusik is that no matter where you are, you can try out a class in your area for free.If you do, I'd love to hear about your experiences, so please keep in touch!



Comments
What a loser!
Friday March 26 2010 08:03:17 am
The Brain