LIFE IS A SPECTRUM
We try to limit TV in our house. We really do. I know all the statistics: how too much TV has been linked to obesity and attention problems -- particularly in autistic kids -- and violence in children in general. One of the biggest challenges with autistic kids is getting them out of their own worlds and interacting with people; clearly TV can be an obstacle to that.
We never have adult TV on while the kids are awake. And by "adult TV," I don't mean porn (though you can safely assume that we aren't watching porn with the kids in the room). I'm talking about anything that isn't on Nick Jr. or Disney or PBS Kids. We don't even watch the news with the kids, because with all the news tickers and quick cuts and crazy graphics and split screens, it starts to give me ADD after about 15 minutes.
So, on the advice of our occupational therapist, we try to limit the kids' TV to about 30 minutes a day. The exception is when they're sick and feverish. When Billy feels so rotten that he just wants to watch cartoons, I don't have the heart to tell him no.
He's been sick for almost a month, off and on, and we've watched “Finding Nemo” so many times that it has become an alternative language for us. You can find a line of dialogue in Nemo to fit almost any situation, as it turns out. We had an unsettling couple of days when Billy spoke almost exclusively in “whale,” but luckily, that phased out quickly.
We also now tell time in “Nemos:” a “full Nemo” is a 90-minute block, a “half-Nemo” is 45 minutes, and so on. It takes about a “quarter-Nemo” to get both kids dressed with shoes on.
Now that Billy's feeling better, I have written a script of my own: It's called “Losing Nemo” and it lasts for the rest of our lives.
So we're going to start this week newly healthy and going cold turkey on the TV-watching. Only educational TV and only for 30 minutes a day.
I will say this about TV, though: Billy can learn stuff he sees on a screen about 10 times faster than something he has to hear some other way. He pays attention when it's on a TV or computer screen.
I'm not just talking about memorizing dialog – though he does have a catalog of cartoons in his head that could rival the Netflix kids' section.
I'm talking about learning skills, even motor skills, by watching someone else complete the task: handwriting, bike riding, dancing, etc.
We've been working with a couple of handwriting programs this summer (not too consistently, because of the illness): TV Teacher and Handwriting Without Tears.
The TV Teacher program is based on the idea that certain autistic kids learn very well from video. The host of the program is an occupational therapist, and she noticed that one of her clients, a young boy, improved a lot after his sessions were videotaped and played back. He would watch them over and over. And they taught him shapes and letters this way before creating the DVD series and selling it to other parents.
It's been a big hit with Billy. We've mainly focused on shapes over the past month. As she teaches each shape, “Ms. Marnie” will show how the child can use the shape to draw something fun: a circle becomes a balloon, a triangle becomes a pizza, and a heart becomes a valentine.
A couple of days ago, Billy and I were drawing with crayons on his easel. He asked, “Draw a heart! Draw a heart!,” so I did. Then I walked away, talking to my parents about something.
Then my dad got a funny look on his face, staring at something just over my shoulder. I turned around and saw that Billy had written “Mom” in the center of the heart. It was slightly wonky but completely legible.
My jaw dropped. No one had asked him to write anything. He had never written “mom” before anywhere.
I picked up the paper from the easel and held it out to him, asking, “Billy what does this say?”
He smiled and pointed at each letter: “M-O-M ... MOM!”
I couldn't believe it. I know that he saw it on TV, but it has been almost a month of non-stop Nemo-thon since he's seen that program. And no one prompted him to write anything. I didn't even know he could spell “mom,” much less write it.
So don't tell me that TV is all bad for children. It may not be a popular opinion, but I think video can be a great way for some autistic kids to learn; I don't understand the science behind it, but I think there's something there. The key is picking the right programs and using this tool strategically.
I'd love to hear any of your suggestions about really good educational programming, either online or on TV/DVD. Or do you think exposing kids to any TV is a bad idea? How do you choose the stuff you'll let your kids watch? I'd love to hear opinions!
We're still sick. And I say "we," because when one of us is sick, we all suffer. Our family is a strategically balanced machine, and when one cog isn't functioning, the whole works grinds to a halt.
I was reticent to share our latest round of illness for fear that people would start thinking I had that Baron Munchausen disease or whatever its called. You know, that psycho disease that you see on episodes of Medium or Law and Order or all those Lifetime movies where the moms keep making their kids sick so that they can take them to the hospital for ... some reason. Maybe they like old magazines or mechanical beds.
Then I realized that anyone who'd laid eyes on me recently would be well aware that I wasn't enjoying myself in the slightest and considering I haven't washed my hair or slept in a week, I'm clearly avoiding drawing attention to myself.
So yep, we're still sick. The third virus.
This one is apparently called “Hand-Foot-Mouth Disease.” I seriously thought that was something that happened to cattle. So after a month of battling respiratory flu and stomach flu, my kids have now apparently got a livestock plague.
But no: It turns out there's no relation to “Hoof and Mouth Disease,” the one cows get. So I guess they could still catch that one.
Hand-Foot-Mouth is a highly contagious (but not dangerous) virus that shows up first, usually, as an unexplained fever. Then it's followed by a rash on the – you guessed it – hands, feet and in the mouth. The whole life of the virus can last two or three weeks apparently. It occurs most commonly in children and also is spread most often in the summer months. Most adults have antibodies to fight it off.
The doctor says that it requires physical human-to-human contact, so most of our friends are in luck. Billy isn't big on going around touching people, so it's unlikely that he's rubbed the cow rash on your children.
I'd never heard of Hand-Foot-Mouth before now (though it's apparently pretty common), so I wanted to get the word out about what to look for: strange, unexplained fever, rash appearing on the feet, hands or mouth and a lack of desire for food.
As soon as we're past this round of illness, I'm going to see a local nutritionist to see if there's anything we can do to boost Billy's immunity. Maybe I'm just paranoid and he's ill no more often than other kids who start school, but it seems as though we've spent the past year doing little more than wiping noses and butts and finding new ways to hide Children's Tylenol in beverages.
We've gone through so much kids' flu meds in the past year that we're thinking of hosting tastings. We can tell you all about the best pairings: Generic ibuprofen and V-8 Fusion, for instance, has a very nice finish. But you don't wanna chase a shot of acetaminophen with rice milk. Recipe for disaster. Children's amoxycillin, however, dissolves nicely in milk.
Anyone have any ideas about boosting immunity? Both kids get a daily multi-vitamin. Our house is not over-run with vermin, and it stays reasonably disinfected, thanks to our long-suffering cleaner.
I've heard something about probiotics helping with immunity, but I have no idea what that is. In fact, when I first heard the term, I thought they were talking about robots.
I could use a robot. Particularly one who could be trained to mix up a V-8/ibuprofen cocktail at 4 a.m. so that I could stay asleep. It would be awesome if it were one of those Tranformers that could also turn into a Hummer and drive us around town and fight crime and stuff.
Sigh. But a robot probably wouldn't be very good at “cuckles” (Willow's word for “cuddles”), and I doubt the Probot5000 would know what to make of Billy's midnight recitation of “It's the Great Pumpkin, Charlie Brown.”
So until the technology improves, they're stuck with me and Dave.
A parent's day is full of perfectly ordinary moments. For us, we were relaxed on the couch on a Sunday afternoon. My three-year-old son, Billy, kept demanding that we blow on his tummy, a favorite game. Then suddenly, he requested, “Blow on Mama's tummy!”
I dutifully pulled my shirt up a few inches to expose my abs – or where they used to be before two children. Delighted, he blew on my stomach a couple of seconds ... then stopped. He stood up, pulled my shirt back into place and shook his head. He explained sadly, “This tummy is too big,” before slowly walking away.
Did I get on the phone and call my mom? Record this moment in my son's baby book? Well, eventually. But thanks to a new website, SquirtBlurt.com, I can share this instantly classic piece of family history with a wide network of appreciative moms and dads.
SquirtBlurt is the brainchild of co-founder Sundy Aimee Visbal, a mom of two young children, and her two friends, Jeremy Self and John Malloy. “The idea came to us because our kids are at that age when they say really funny, precious things, and we wanted a place where we can share what our children are saying and read what others had to share,” said Visbal.
Visbal points out that while almost everyone has Facebook and Twitter accounts, those networks aren't always the appropriate place to chuckle over your kids' gutbustingly funny turns of phrase. Are the single co-workers in your Facebook network really going to appreciate what your son had to say about potty training? Will old college chums “get it” when you post your three-year-old's hilarious versions of nursery rhymes?
“My kids will say something really funny and then five minutes later I’ve forgotten what it was they said,” she explained. “Squirtblurt.com is a unique site that focuses on those cute and sometimes laugh-out-loud funny things children say.”
The process is simple: Create a free user profile -- a process that takes about a minute. Within another minute, you'll be “blurting,” typing in your favorite anecdotes and sharing them with SquirtBlurt's network of fellow parents. Once your blurt is live, others on the network can vote on its hilarity, mark it as a favorite, or make a comment.
“Hot blurts” make it to a highlighted spot on the home page, and parents with the funniest blurts can find themselves on the “Monthly” or “Daily Leaders” board. If you decide you do want to share your blurts with your Facebook friends or Twitter tweeps, a built-in click-and-share button makes the process seamless.
I should warn you, though: SquirtBlurt is highly addictive. I log on to share my kids' blurts, and find myself unable to stop reading others. Yasmin, age four, describes Little Miss Muffet, sitting on her tuffet, “eating her curtains away...” Mateo, age 7, tells his mom: “I'm a god.” Three-year-old Elizabeth informs her parents that she's “having a rough day” at 8 o'clock in the morning.
Our kids grow up too quickly. In a world that's frequently too cynical and jaded, SquirtBlurt.com lets us freeze those priceless moments of kid wisdom and for a few minutes look at the world through the innocent eyes of a child.
There's an apparently incredible new documentary out about autism, “Loving Lampposts,” directed by Todd Drezner, the father of an autistic son. Of course, it hasn't come to Tallahassee yet, and in the event that I ever get a minute of free time, I'm going to petition somebody somewhere to bring it here.
The documentary is about the ongoing debate in the autism community: Is autism a sickness that we need to cure? Or is it a variation in the human brain and simply an alternative way to think?
The “recovery movement” is made up of those individuals – doctors, parents, therapists – who believe that there is an “epidemic,” which may have been caused by toxic vaccines, insecticides, or other environmental toxins. They look at autism as a sickness that needs to be cured or healed or recovered from.
The “neurodiversity movement,” by contrast, preaches against focus on cures and treatments, pushing instead for greater acceptance and support. Many autistic adults find themselves in this group, apparently, rejecting the idea that they are sick and need to be cured. That doesn't mean they don't recognize the challenge of living with autism in this world, but they would rather see more attention on embracing people with differences, rather than trying to “fix” them.
On most days now, I'm happy to consider myself a member of this second group. I do believe that autism is a fundamental part of who my son is. While the condition is to blame for many of his challenges in life, such as his communication difficulties and troubles with coordination, it is also, I believe, responsible for many of his remarkable gifts: He can easily memorize complete books, movies, TV shows. He sings pitch-perfectly and has a perfect memory for tune. He has an amazing sense of rhythm. I don't want to cure him of who he is.
But occasionally I experience what St. John of the Cross described as “the dark night of the soul.” These hours seem to last an eternity, and most frequently occur when I wake up in the middle of the night – maybe Willow needs a diaper change or, more often these days, Billy wakes us up over the baby monitor with a startlingly sudden verbatim rendition of the dance party sequence in “Charlie Brown Christmas” – and I find it nigh unto impossible to get back to sleep. During those creeping hours between about two and five a.m., I wonder, “Couldn't we just cure a couple of things? How can I recover his ability to sleep?”
And then I start planning out the next day, thinking about all the ways I can use every single moment to teach him something new. Every single moment. I'm petrified by the sense that time is slipping away from me, that a “teaching moment” might slip through my fingers, and it'll be lost forever. As though he has one moment on a Tuesday afternoon to learn how to spell “cat” and after that, the moment is gone.
It's the middle of the night. I get a little crazy.
Case in point: We've just come off a week of “stay-cation.” That's what it's called when you stay at home and act like a tourist in your hometown.
We had a great week. We went to the Mary Brogan Museum, the park, the movies, the bowling alley. We tried to find “teaching moments” everywhere we went.
At the bowling alley, I showed Billy that his ball had the number 8 on it, and mine had a number 15. Each time the balls came out, he would find the number 8 or help me find my ball or Daddy's ball. It was great.
A couple of nights later, it's 3 a.m. and I'm thinking about the bowling trip. And I'm thinking about ways I could have made it more educational.
“The shoes!” I think. “There were numbers on the shoes!”
I couldn't believe I had missed that. I could have taught him his shoe size. It was printed right there on the back of his shoes. We could have talked about how Daddy's size was bigger because his feet were bigger. We could have learned sizes and “big, bigger, biggest” and which number is larger ... I could have kicked myself for missing it.
Like I said, it's 3 a.m., and things get a little out of perspective.
“I have to remember the sizes next time!” I tell myself. “How will I remember?” And it occurs to me that I have to leave myself a note. Otherwise, I won't remember by the morning, much less by the next time we go bowling.
So I sneak out of bed and downstairs at 3 a.m. to write myself a note.
And that's how I came to find Dave, the next morning, standing in front of the fridge with a puzzled expression on his face, holding a carton of milk in one hand and a Post-it note urging him, “DON'T FORGET: NUMBERS ARE ON SHOES!!!!!!!” in the other.
He doesn't even ask. He just sticks it back to the fridge with a magnetized letter “Q” and takes his milk to the table.
Billy comes to the table looking beautiful and sleepy-eyed and announces, “Cereal! With milk!” After a moment: “Please!”
And I look from Billy to the fridge covered with my crazy notes to myself and I wonder seriously about which one of us is dealing with the bigger issues.
Neurodiversity it is.
Billy has been walking around this week, reciting the same line from “It's the Great Pumpkin, Charlie Brown” over and over.
It's the scene where Lucy tries to get Charlie Brown, once again, to kick the football she's holding. She promises him that she means it this time, that she won't pull the ball away at the last minute. In fact, she even has a contract to that effect, which she shows him.
Of course, at the last minute, she pulls the ball away and Charlie Brown goes flying. “Curious thing about this document,” Lucy says. “It was never notarized.” That's the line that, for some reason, Billy can't get out of his head.
This got me thinking about a couple of things. First of all, the kids in Charlie Brown cartoons are really mean and terrible role models.
Secondly, I thought, OK, Bucko, if you're interested in contracts, let's make one for the summer. We have nearly three months at home ahead of us, me and you and Willow, and we need to establish some ground rules. So here goes ...
My SUMMER CONTRACT WITH BILLY
The house rule “Please don't poke Mama in the eyes” still stands. But let's agree not to share it repeatedly with guests or people at church. I'll take my chances with them.
I promise to keep your baby sister away from your train table if you promise not to sit on her. For long.
If you will nap for two hours every afternoon, I will buy you a car.
If a thunderstorm scares you, you can crawl into my bed with me and we'll watch cartoons the rest of the day.
If you force me to watch “The Great Pumpkin” more than five times in a row, I am entitled to throw the television out the window. Upstairs.
In the event that it rains three consecutive days in a row and you are unable to go outside, I reserve the right to call in the babysitter, lock the door of the playroom from the outside and drink heavily in my bedroom. You may paint anything within arm's length, including the aforementioned babysitter, until the sun comes out.
I promise not to loudly ask, “Have you done a poo-poo?” in public any more – after all, you'll be four next month – if you promise not to loudly proclaim “Chugga-chugga POOOOO-POOOOO!” in the library. (For supporting documentation, refer to the book “The Potty Train.”)
On the day you poop in the potty, I will sign the house over to you.
If you stumble and fall, I will be there to pick you up every single time, kiss it better, and immdiately apply a “Bang-aid” if required. In return, you promise not to seal your sister's eyes shut with Bang-aids.
At 5:30 each and every weekday, I transfer power of attorney over to your father. Any and all requests for juice, fixing of broken toys or watching of the “Great Pumpkin” must go through him until such time as I emerge from a hot bath with my game face on again.
I will throw you the birthday party of your dreams this year and every year ... if you promise not to grow up too fast.
If you will hold my hand this summer and put up with me, I'll hold yours and find joy in each and every day we share together.
Please sign at the left if you agree.
If you look around our house these days, it looks more like we're digging in for the nuclear winter than preparing for summer vacation. But getting ready for a holiday period with an autistic child, a period with schedule and scenery changes galore, is a bit like going to war. The options include Extended Year Services through the public schools, a new preschool, or developing a summer program of our own to implement at home.
I don't mean to suggest that we're going to war with our child -- or even with autism, with which we've made a comfortable truce. We're battling “regression,” a term with which every parent of a special needs student becomes familiar eventually.
When the school system – most likely your IEP team – makes a decision about whether or not your child should have Extended Year Services (EYS), their concerns about regression play a big role in that decision. “Regression” refers simply to losing skills your child has attained throughout the year. (I wrote an article about EYS for the Special Needs Examiner, which you can read if you're interested in summer services, but for a variety of reasons, we decided that Billy was better off at home over the summer.)
Billy could happily spend the summer in the middle of a pile of mud with us occasionally throwing fish sticks in his direction. But we want to make sure that the stress of the summer schedule changes doesn't cause him to lose the ground he's gained in academics and life skills this year. Dave and I sat down and talked long into one night about our hopes for the summer, and eventually boiled down our goals to three simple ones:
Potty Training: If you have any suggestions at all in this area, I will pay you for them.
Sleeping: We want to get Billy out of his elaborate enclosed crib-style bed and into a “big boy bed.” Again, suggestions? How do you keep them in the bed if they don't want to stay there? Currently, he goes to bed each night at 7:30 p.m. but stays awake sometimes for an hour reciting books and TV shows and singing the soundtracks of every Charlie Brown holiday special from “Happy New Year, Charlie Brown” to “A Charlie Brown Christmas.” If he weren't in an enclosed bed, he would probably run around his room all night long. I guess we'll find out soon enough if that's true ...
Handwriting/Drawing: Billy has made HUGE strides in this area this year. At the beginning of the year, if handed a crayon, all he'd do is peel it or perhaps chew on it. Now he can write his name, copy some letters and shapes, and he really enjoys drawing.
We wanted to build on that interest and success, so we invested in a couple of different products. The first, “TV Teacher/Alphabet Beats,” is a DVD-based handwriting program recommended by his private occupational therapist. I wrote a detailed review of it here. Billy loves the little rhymes and songs, and I credit “Ms. Marnie” with teaching him to draw a spider.
When we attended his end-of-year conference at school, though, we were introduced to the program he's been using throughout the past year. A really impressive mult-sensory program, “Handwriting Without Tears” addresses what I'm told is one of the biggest problems with special needs kids and handwriting: They get frustrated because holding a writing utensil is difficult for them, so they can develop an aversion to handwriting and just refuse to do it.
“Handwriting Without Tears” doesn't even require them to touch a writing implement until they're ready. Instead, they learn to form shapes and letters first with wooden pieces and then Playdough. Then they move on to magnetic letters on a magnetic erase board before eventually moving up to a slate and tiny pieces of chalk. There's an easy-to-follow teacher's (or parent's) guide and a workbook with fun pre-writing exercises in it.
Despite all the pieces and parts, “Handwriting Without Tears” is actually less expensive than the “TV Teacher” program. For a complete set, both are going to run in the $100 range. However, you don't have to buy every piece at once.
We're going to use a hybrid of the two over the summer. Billy likes to watch the DVDs and draw along with Ms. Marnie, so we'll let him have that as a reward. And for 5-10 minutes each morning, we'll work with the tools in the “Handwriting Without Tears” program.
Who knows? Maybe by the end of the summer, maybe Billy will be writing this blog for me. Wish us luck! (And I'm serious about those potty training ideas – PLEASE post them here!)
I was always a great test taker in school. I actually liked tests ... certain types of tests, anyway, the kinds where you regurgitate facts like names and dates or write essays on a particular subject. When math tests became about looking at a cone and figuring out its volume, I might as well have been asked to conjugate Martian verbs. Not in my wheelhouse, let's say.
But I never got nervous about tests, as long as I was prepared. I never understood those people who got panic attacks, blanked out, or broke out into hives at the idea of a test.
Until, that is, I watched my son get tested last week.
He's 3 1/2 and he had his first hour-long standardized test. Yes, standardized testing for a 3-year-old. And the hour-long session was just the FIRST part of his testing -- he had two more parts of the test after that.
I was asked to go with him, to help keep him on task and engaged as he completed a series of tests on everything from stacking cups and blocks to writing letters. He started out doing really well. In fact, when he copied three letters just as they were written on the page, my jaw dropped. I didn't know he could do that!
Twenty minutes into the session, though, Billy was going all "wet noodle" on me, sliding out his chair, as though his spine were made of Jell-o. He crawled under the table a couple of times, started reciting "Happy New Year, Charlie Brown" at top volume to drown his teacher out when she asked a question about the color of a carrot. Unfortunately, there are no bonus points for informing the teacher that Leo Tolstoy wrote "War and Peace" and that his wife, Sofia, copied it out seven times by candlelight. Nope, you've still gotta know the color of a carrot.
I tried a trick I learned from his OT (occupational therapist) and took a break to do some "wheelbarrow walking." If you aren't familiar with this move, it's when you lift the child's feet in your hands, and they use their hands to walk across the floor. We would wheelbarrow walk around the room a few times, and Billy would settle down enough to be able to point to a picture of an ice cream cone or draw a couple of vertical lines. Then we'd hit the floor again, and wheelbarrow walk for a few minutes.
Suddenly, I had visions of myself attending medical school with him one day, and wheelbarrow walking him through the lab at Harvard until he felt comfortable enough to go back to dissecting his corpse or injecting lab rats with something. And I'll do it too. I'll probably be in my sixties, and he may have to carry me around campus in a big backpack, but that's probably good therapy for him as well.
Anyway, after an hour of the standardized testing, something in Billy just flipped and he was done. He was beyond done. He was overwhelmed, confused, exhausted emotionally and mentally.
And he started biting himself. For the first time ever, he started doing this incredibly self-destructive behavior and my heart just broke for him. What had I done to him? Why had I agreed to subject him to this torture? How did I not see that he was unraveling?
His teacher, as patient and loving a pre-K teacher as we could ever hope for, immediately ended the test. She said she could break up the rest of it, do some of it outside, or ask him a few questions here and there when he was in a better state of mind.
When I talked to another therapist about it later, she asked me, "What is this testing for?"
I had no idea.
"Did you give permission for him to be tested?"
I had no idea. If they asked, I probably did. I never occurs to me to say no. I'm a rule follower. Remember, I like tests?
After asking several people, I still have no idea how this test data will be used. It's not used to determine whether he qualifies for services. Apparently, that won't be re-evaluated until before he starts kindergarten. Best guess, it's some kind of progress test.
But that makes no sense either. Billy has five therapists, a full-time classroom teacher, two teacher's aides; we have an IEP, regular progress reports on his IEP goals and frequent parent-teacher conferences. No one is in any doubt as to Billy's progress -- except, apparently, me, because I had no friggin' clue that he could write letters or fasten buttons. He's been holding out on me.
Long story short, I've learned a valuable lesson about standardized testing. There's still a lot I don't understand about it. There's still a lot that frustrates me about the existence of standardized testing -- even though I know that in some ways it's a necessary evil and I don't really have a viable alternative to suggest, considering the resources, and lack thereof, that our public school system is dealing with.
I'm happy to report that Billy was totally fine once the test was over. When I led him back to his classroom, he looked in the door at the other kids seated for circle time, spread his arms wide and called, "All Billy's friends!" as though he were greeting them after an absence of much longer than an hour.
The next time I'm asked about testing Billy, I'll have a whole host of questions about the need for, use of, and length of the test. I'll also pay much closer attention to my child during the testing. Rather than fantasizing about him thanking me personally when he wins his Academy Award one day for Best Director of the highest grossing film of all time, or about how I'm going to get his limited diet of mac-n-cheese and chicken nuggets on the space shuttle -- I'll try to indulge my parental fantasies a little less and watch my child a lot more closely in the here and now.
I thought I was turning 40 this week. That's how stressed out I've been; I lost a year.
I'm actually going to be 39 on Friday. I still get excited about my birthday. Dave calls it "Mandi Awareness Month," because I start reminding him well in advance of the big day and make it very clear what my expectations are: a birthday card made by the kids, a cake with candles that Billy can blow out, a second DVR for our bedroom, and a trip to some place with daily maid service and a heated pool.
But this year has been a little different. Or at least, this month has been a little different. It's been tougher, more stressful.
I want to be honest about the stress and the hard times, because I always write about our breakthroughs, our happy moments and our family's abundant joy. Those moments are worth writing about. But so are the hard times.
I recently read a post on one of the autism support group message boards in which a parents said something like, "What am I doing wrong? I read about all this great progress that other parents have made with their autistic kids and I actually resent them. I have a terrible attitude. I feel depressed. Most of the time I don't know how I'm going to get through the day. I think I have the worst attitude of any parent on here. Sometimes I resent my own child."
Sometimes we all do. And I want to apologize right now if I've ever given anyone the impression that I don't have those days. I do.
I have days when I don't know how I'm going to get through it. I have days when I feel a LOT older than 40. I have days when I am so angry at all these parents who have it so easy ... even though I know in my head and my heart that nobody has it easy. We all have those days.
The past couple of weeks have been hard because Billy seems so angry at me more of the time. He's angry about being asked to go to the bathroom. He's angry about getting dressed. He's angry about getting into the car. One night --or morning, I should say, because it was 3 a.m. -- he was angry about it being dark outside. He pulled the curtain back, looked out the window at the darkness and screamed, "No more night! Good morning! Good morning!"
I'm flattered that he thinks I have control over that, but I was really friggin' tired and not seeing the funny side.
An OT and a couple of parents of autistic kids have all told me that frequently a period of bad behavior precedes a big leap in cognitive ability: the one step back, two steps forward theory. All I can say is Billy must be getting ready to do calculus, if there's any truth to this theory.
We spend so much time trying to understand our kids' emotions, validating their feelings, teaching them how to handle stress and fear and anger. And meanwhile, we beat ourselves up and invalidate any negative emotions we might have as parents.
It's okay to feel like you don't have a handle on things. Frankly, I don't trust anyone who claims to have it all together. But even in the midst of this stress and anger and even depression, we have to keep going. We're parents and we don't get paid vacations. That being said, when I'm having a really hard day, here are a few things that help me center myself again:
1. Asking for help: It sounds so simple it's stupid, but you MUST have someone to help you sometimes. If you aren't lucky enough to have close family around, reach out to the autism community, to your church, to your closest friends, and create a network of moms on which you can lean. Be honest with them, and take the step of actually calling on them, even if it's just to take one hour to yourself.
2. Support groups: Part of the problem with having kids, is that you often don't have time to join the groups who can support you. Luckily, there are a lot of great online support groups now. The members may not be in your back yard, but they can certainly commiserate and very often, they have very good ideas for tackling problems. I am a regular contributor on Circle of Moms Autism/Asperger's Support Group, Autism/PDD Message Board, and the Floortimers Yahoo Users group. There's also a Special Needs Kids section of MomsLikeMe.com.
3. Exercise: Nothing relieves my stress like a long walk. I put the kids in the stroller, where they're safe and sound and strapped in, give them each a cup of juice, pop in my earbuds and actually listen to a book while we walk for an hour. A side effect is that I'm in better shape than I've been in a long time. I truly hate every other form of exercise, but I like to walk. And I like to read.
4. Clear the schedule: When all else fails, when you're overwhelmed and your kids are melting down and you're behind on 45 different projects and you don't know how you're going to get it all done, cancel some stuff. This was one of the hardest things for me to learn to do. But sometimes an afternoon free of appointments and car rides and transitions is just what you and your kids need. People will understand.
5. Clean something. I organize areas of the house when I get stressed: closets, drawers, shelves. I've known people who tackled their ovens, bathrooms or ironing whenever they got overwhelmed. Parenting an autistic child is so full of complicated problems and questions with no easy answers; those questions, and the answers, change from day to day. Sometimes it feels really good to have a problem as simple as a messy drawer to deal with: easy to solve, you know when you're done, and it's easy to see that you've made progress. Parenting is never that simple.
Despite the title of this post, I'm not writing about a fear that Billy will run off to Vegas and marry a showgirl.
No, it's just the running that scares me -- and with good reason. The behavior therapist who's working with him at school says this running -- as far and as fast as possible at the drop of a hat -- is called "elopement."
Yes, I said "behavior therapist." As much as I am a proponent of Floortime therapy and the developmental approach, I do believe that behavior therapy is effective on behavior problems.
For those of you aren't familiar with the "civil war" going on in the autism world, there seem to be two camps, with parents either choosing sides or vascillating between the two, pitching their tents a little closer to one side or the other.
For a few years now, behavior therapy has been publicized as the only successful treatment for autism. That is hogwash (in that it is the ONLY successful approach, not that it has been successful, which is undisputed), but it is a position widely adopted by the media, in part because of the successful lobbying/press efforts by ABA therapists. They are organized, well-funded and they get things done. (Just as an aside, I would like to know what happened to turn the TV show "Parenthood" into a VERY successful Public Service Announcement about behavior therapy.)
Applied Behavioral Analysis "is a system of autism treatment based on behaviorist theories which, simply put, state that behaviors can be taught through a system of rewards and consequences," according to About.com. (I used their definition because it's simpler and easier to understand than that on the Association for Behavior Analysis International page.)
In the past, I have heard some occupational therapists and developmental therapy devotees describe ABA as "dog training" because of its emphasis on repetition and reward to alter surface behaviors. For instance, behavioral therapists might focus on getting the child to sit for longer periods in class or eliminating stimulating behavior like hand-flapping or spinning. To some degree, all parents naturally use behavioral principles to reinforce good behavior and eliminate negative behaviors.
That dog training image, though, is the image I had in my head less than a year ago when we wholeheartedly adopted Floortime, a strongly developmental approach, as our philosophy of therapy -- a philosophy and outlook we still consider our guiding principle.
Often seen as the opposite pole to the ABA approach, developmental-based therapies follow the child's lead, de-emphasize routine and repetition over following the child's "joy" and trying to create desire for communication. But to compare apples to apples, let me go back to About.com for their definition: "Developmental therapies are intended to directly addresses autism's core deficits. To achieve this goal, they recommend that therapists and parents work with the child's own interests or actions to slowly build engagement, interaction, communication, affection, and then specific skills such as logical reasoning, symbolic thinking and more."
Strengthening Billy's ability to communicate is our primary goal. Everything will get easier once he can successful describe what he wants, what he feels and what he needs. We have seen amazing gains on this front since we adopted a Floortime approach and enrolled him in occupational and speech therapy with professionals who also believe in a more developmental approach.
All that being said, it's hard to communicate with a child who's half a mile away from you and increasing the gap with every stride of his long legs.
Last week after occupational therapy, as we were going through our getting-into-the-car routine, he suddenly slipped past me and bolted. It happened in an instant and was seemingly unprovoked (I say "seemingly" because I don't know what provokes him sometimes; he might have been hot and wanted fresh air).
Within seconds, he was around the side of the therapy building and there I still stood, with Willow still in the stroller and Billy on the run. I was terrified, frozen, unprepared.
I pushed her as best I could as far and fast as I could until I could make eye contact with him. He had cornered a nearby nightclub and was standing on a rickety deck, a few feet from stairs that went down towards ... what I don't know. And he was grinning at me.
I screamed to him, begged him to him to come back. "Willow is scared," I said. "She's by herself (she was a few feet behind me) and she wants Billy to come back."
He seemed to consider for a few moments. It could have gone either way. But slowly, he shuffled back toward me, until he was within my grasp.
I admit it: I yelled him then. I yelled at him that he had scared me and he was never to run off. And of course, then he got upset and tried to pull away again. It just went from bad to worse until I was able to bundle everyone back in the car.
Then I cranked up the air conditioner and the Kindermusik CD on the stereo until I could barely hear the screaming in the backseat and lowered my head to the steering wheel and finally let myself start shaking.
He could have run directly into traffic, I told myself. He could have fallen off that deck. A hundred nightmare scenarios went through my head, none of which were productive. But I told myself one thing: I would not be unprepared for this particular scenario again.
My solution is not elegant: I attach him to me with a strap locked on to his belt loop the second we leave therapy. He might get away but he's not going too far too fast if he has to drag me and Willow behind him. And I reward him for getting into the car and waiting patiently for his car seat strap to be attached. Good behavior = treat.
The point of this long story is this: Sometimes there's a place even for dog training. It's not pretty but this particular behavior is an absolute no-go.
Do I think that behavior therapy can cure every autistic deficit? I'm certainly no expert, but I think pure repetition and reward is unlikely to create a desire for more rich communication.
That being said, I've learned enough about actual behavior therapy to realize that very few of them actually practice in this manner. Practical behavior therapists are adopting developmental principles, particularly with younger children. And many developmental enthusiasts are finding a place for the principles of behavior analysis.
Parents should weigh every bit of advice they get better than I did in the beginning. See for yourself before making a judgment. And see more than one therapist.
Also, realize that your child is going to require a unique recipe that only you can write. After watching your child over a long period of time in a variety of situations, you will be the best judge of what is a behavior problem and what is an autistic deficit. And when you try one therapy combination, it may not work, and the recipe will require some tweaking. And it may work for a little while and then your child's behavior or progress will require something a little different.
That's OK. We're parents. The only place we're required to set up camp permanently is in a place that makes our child happy.
Are any of you engaged in behavior therapy? If so, what behaviors are you targeting? How successful has it been? If you're adamantly opposed to this form of therapy, I'd love to hear from you too.
I had the most incredible dream a few nights ago. It was so real, because for once, I had actually managed to remain asleep long enough to get some R.E.M. sleep. I might have slipped into a mild coma, I was so tired. But nonetheless, I dreamed.
In my dream, Billy woke me up. He was standing next to my bed and talking, completely normally about his day, about the friends he wanted to see at school, about his favorite things to do. He was looking into my eyes and just talking and talking and talking.
I couldn't move or speak myself. In my dream, I was purposely remaining silent, because there was a part of me that knew that any sudden sound or movement could burst this moment like a bubble. I treated him like a baby deer that had wandered into my bedroom. If I said or did anything, he might suddenly remember that he was autistic and stop talking.
This was a better dream than the time I dreamed that Josh Holloway from "Lost" turned up at my front door and told me he was madly in love with me and I had to let him down easy.
In my Billy dream, I woke up suddenly. One of the kids probably made some sound on one of the baby monitors.
By the time I was awake, though, everything was quiet. And I felt like I'd been punched. Half-asleep, I kind of clawed at the air where Billy had been standing in my dream, like I could grab hold of that ghost-Billy and pull him into the real world. My face was wet, but I didn't remember crying.
Then I heard my Billy, the real Billy, over the monitor. He was singing, "If you're happy and you know it" at top volume. And I knew I wouldn't trade him for anything in this world. I wouldn't trade him for an imaginary, perfectly communicating Billy -- as much as I'd like to make his life easier.
He's happy and he knows it.
And so when conversations about a "cure" for autism take place, I'm coming from a different perspective than I did a couple of years ago. If someone handed me a pill and said that I could give it to Billy and his autism would be gone immediately and forever, I'd have a lot of questions. What would happen to his beautiful singing voice? His amazing memory? His fantastic sense of humor? His quirky way of looking at the world? Would he still love to be tickled "On the head, on the feet, on the EYES!!"? Would he still demand "Mama's bed!" every single morning? Would he still wake up singing?
Billy's not the talker that he was in my dream. At least, not yet. But we're getting there. Some days are harder than others -- for all of us. But he is making wonderful progress every single day.
I like to think that dream was a glimpse into the future, that for a few brief seconds, I was given the gift of seeing what we're working toward. Someone somewhere maybe knew that in order to keep hoping and believing and working, I needed to experience what was possible. Maybe it was an early Mother's Day present from my guardian angel.
Who knows? Josh Holloway could knock on my door any minute now. Poor guy; I'll try not to break his heart. But you know, it's only fair to hear him out.



Comments
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Sunday June 27 2010 03:21:29 pm
Leah
YouTube and My Sister's Wedding
Sunday June 27 2010 08:52:28 pm
JD in TLH
MOM -- awesome!
Wednesday June 30 2010 05:03:30 pm
LS
From Amanda Broadfoot
Friday July 02 2010 08:55:07 pm
From Amanda Broadfoot
mom <3
Tuesday July 06 2010 11:42:24 pm
jeni wilmot
From Amanda Broadfoot
Wednesday July 07 2010 10:22:33 pm
From Amanda Broadfoot