Here is the slideshow I made for my mom’s memorial service, divided into two parts just due to file size. The first one is family history, including her great grandparents and her early life, the second starts with her marriage through the rest of her life.
I’ve actually had some success getting started with exercising again, and a number of folks have mentioned how tough it is getting motivated to exercise.
I’ve got to tell you…..I whined and complained quite a bit getting going. I didn’t like exercising AT ALL. Why? Because it was really uncomfortable. For me, getting out of breath is a really scary feeling. I believed that my being out of shape was perhaps impossible to reverse, and that exercising meant that I had to put up with that awful out of breath feeling. I thought that exercise was always going to be unpleasant.
It was really embarrassing when I had to keep asking my kids to stop so I could catch my breath, especially when I was going uphill. I remember one time, I signed up for a 5K walk and I was walking with friends who had just finished running the same route. I asked them to slow down…..and they did, but I was still very uncomfortable. My knee hurt. My foot hurt. Everyone was going too fast. It was incredibly humiliating, and I had pain for days after.
I didn’t like the culture of exercise either. Exercise was never going to get me a hot body, so that just wasn’t going to work as motivation.
I started taking walks by myself. Walking by myself was less difficult, in that I could go at my own speed. It was so much more comfortable, and I didn’t have those embarrassing moments of asking a friend to take a break. Just keep telling yourself: if I can make it through the painful beginning of getting in better shape, the discomfort will gradually lessen.
There are other great things about walking by alone. When I’m on a trail with a friend and talking, the critters hear us and hide before we can see them. I see and hear so much more when I’m walking alone, and this makes it much more enjoyable for me. I get a lot of enjoyment from noticing each new flower blooming in the spring and summer, and all of the tiny changes in the plants from week to week.
You might not be interested in plants at all. You might be more motivated by keeping data on how far you walk each day and week. You might need to play around with different motivators to figure out what really floats your boat. The thing is, you can’t always know ahead of time what’s going to work for you. I didn’t know that there WERE herons, swans, eagles and hawks living so close by, that I might see.
I do get a little nervous about being alone on certain trails, especially in the summer when the underbrush is very thick. So if I am walking alone, I go at times where there are likely to be other people now and then. I rarely see other women walking alone, except on very well populated trails, or when they are walking a dog. I feel safer walking alone in the winter, as I can see far into the woods once all the leaves have fallen. Winter has it’s own special fun, as it’s much easier to see the birds. Flat trails become more challenging when there is snow. However, there are some places I just don’t walk alone. Being afraid tends to detract from the whole walk experience, and sucks away from your motivation. But I do notice that I am less afraid now that I am familiar with the trails, and alert to the usual noises.
I think that for many people, finding a walking buddy is a big motivator. If you have a job with regular hours, you could buddy up with a friend to walk before or after work, or at lunch. If the nearest walking places are boring or repetitive, it would be awesome to have someone to talk with. A sensitive friend would try to make adjustments in her pace if needed.
My work has quite varied hours, and I tend to sneak in walks when I have a free hour in between appointments. Even weekends, I often work or have family obligations….and then there’s the weather, and early nightfall. It takes a lot of motivation to work around all of these variables in the winter. In the summer, it’s easier to wait until later in the day when I am done working and it’s not so hot. If I only walked when I had a date with a friend, I wouldn’t get many walks in. In theory, walking dates with friends is a fabulous idea, but, it can be kinda limiting when you have a busy schedule.
At first, I thought I needed to go for a hike in a special place, and often drove 20–30 minutes to get there. So this took up a lot more time, and I was less likely to do it. Finding walking places on my regular travel routes made it more likely that I would take a walk. Sometimes on the weekend, when I have extra time, I explore a new potential walking spot. It takes extra time to find the trailhead and the parking, and sometimes you might worry about getting lost on the trail. This is a great use for a smart phone, as you can locate yourself on the GPS and figure out if you are going the right way. It is really amazing how many interesting walks I have found very close to home, researching on the internet and using Google maps. Once I am familiar with a trail, it is easier to go when my time is limited. During the work week, if I only have 30 minutes, I set an alarm for 15 minutes and force myself to turn around when it goes off.
So now, walking feels pleasurable and comfy, something I look forward to. The walking trails are like old friends, and I enjoy seeing the changes happening with the seasons and weather. So it’s turned from a “should” into a “want to”. Walking IS the reward now.
Everyone’s life is so different, I know that what makes it work for me is different than what might make it work for you. There’s a lot of “motivational” talk making it seem that it’s super easy — just do it. Just get out there. What could be easier than taking a walk? Well…..it’s not always so easy.
Bully is finally playing in our area, at Steelstax in Bethlehem, just for this weekend!
I keep seeing commercials for The Bully Project. So I’m starting to pay attention. I watched an interview with Alex Libby, one of the 5 kids who were followed for a year in this important documentary. The stories of these kids are heart-breaking, and include two children who committed suicide after prolonged bullying.
Something about Alex made me watch more carefully — does he have some form of autism? They don’t mention it – but I spot a blue puzzle pin near his shoulder, and when I look closely his mom is wearing one too. I check the promotional website but Alex’s bio doesn’t mention Autism. I wonder why.
Digging deeper, I find an explanation from the film-maker, Lee Hirsch: “…both Tyler Long and Alex have Asperger’s Syndrome, and we made a conscious decision not to disclose that in the film. We certainly could have, and perhaps it would have…
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Language development goes beyond learning names of objects and grammar to learning slang and idiomatic expressions. It is essential for older children and teens with autism to have a good handle on how peers are using language. Parents may have mixed feelings about teaching slang as it is often associated with non-standard words referring to body parts and sexuality. It feels wrong for adults to intentionally teach about words we really don’t want kids to use, but children with autism often benefit from direct teaching about all forms of non-literal language. Kids with ASD can particularly get in trouble with sexually tinged language, for example accidentally using a common word that has multiple meanings. Peers may find ways to use this lack of knowledge to tease a child with a disability so that others in the group will laugh at the child’s cluelessness.
When kids with autism are small, we first struggle with teaching basic naming. We move from naming to generalization: it’s not enough to name one picture of a cow, kids also need to recognize a cow with different colors and patterns, in cartoons and photos, as well as more abstract toy cows. Language learning starts out on this concrete level. Often, speech therapists are “done” teaching language when a child has a reasonable vocabulary and grammar as measured by tests of expressive language. When parents express concerns that a child is not understanding and using speech like his peers, speech therapists may send home a worksheet with 20 examples of non-literal language and idioms, but this is just a drop in the bucket in teaching idioms as there are thousands of such expressions in daily use.
Higher level academic work is dependent on understanding of abstract language, and reading such literary classics as Shakespeare requires the ability to decipher new meanings. Students with autism will need assistance in progressing from concrete to more abstract language if they are mainstreamed academically. Parents can support learning about non-literal language by continuing to read aloud with children even after they are reading on their own and discussing meanings of words, expressions, and social inferences. Popular music, TV shows, movies, and cartoons are also rich sources of language that parents can use children to take advantage of “teachable moments” with children. It can be fun to teach through the use of pictures. For several years, I put an idiom of the day on my daughter’s laptop, so that she’d see it when she logged on.
Typical children do not need to be taught basic idioms, but a child with autism ,may not pick up the meaning in context. In later elementary school, idioms may be taught as part of language arts, but children with autism need instruction early, in order to follow basic directions given by adults. A child may look like a deer in the headlights when you tell him to “hand it over” or to give you a “hand”. Sometimes an adult will give directives using indirect or idiomatic language, and become upset when a child with autism appears to be non-compliant. But if you say “Would you mind backing up a little?”, children with autism may get stuck on “Would you mind?”, because they don’t understand that they need to comply even if they DO mind. They may not understand the variety of meanings of the word “back”: back up, back down, get your back up, get off my back, behind her back. You can find long lists of these expressions at websites, such as Free Language Stuff. I use this phrases intentionally with children with autism, and provide them with an immediate translation. For example, I might tell a child to “cut it out” and follow-up saying “that means I want you to stop”.
In later elementary school, no later than 5th grade, it is time to get familiar with slang expressions. Slang includes new uses of existing words, as well as invented words. Some invented words are based on abbreviations. This is more and more common as abbreviations emerge from “text talk”. Some text talk is only used during writing /texting (such as CUL8R) but other text talk is increasingly incorporated into conversation such as OMG, TMI, BFF, BF/GF, yolo ( you only live once ) and IDK ( I don’t know). Kids don’t need to be able to use these expressions, but it helps if they understand what they mean.
It’s fun to introduce slang in current music, and you can find less sexy versions of music videos appropriate for younger kids, such as the Chipette versions of popular songs. Here is a fun Chipettes mash-up of two popular songs: Something To Dance For / TTYLXOX “MashUp” (The Chipettes Version) – YouTube.
Some abbreviations, such as LMFAO, BFD, and WTF are substitutions for “bad” language. If you don’t know what these mean, you can look them up on Urban dictionary.com . It is important to teach kids that although abbreviations and substitutions of bad language are slightly less offensive, using them with teachers and the principal is disrespectful. Many children with autism appear to be disrespectful because they miss the social context of language. We need to teach them many unwritten rules, for example, that adults can use command language with children, but school age children are rude when they use command language with adults. Imagine a child with Asperger’s telling the principal to “move it”, or worse, “move your butt”. When a child is scolded for being rude, it just confuses them, as they may be repeating words they heard on the playground, or that adults used with them.
Kids across the autism spectrum can pick up bad language they hear at school or at home, but explanations should be tailored to cognitive level of the child. Younger children and children with cognitive delays may hear a bad word they don’t understand and repeat it; the heightened attention that follows makes it more likely that a child will repeat the word just for the drama. The safest approach is for adults to use minimal attention and emotion when addressing use of “bad words”. For children who enjoy drama sometimes it’s possible to teach funny or cute popular expressions, so that they do get the attention they are craving. It might be cute if a child says “Oh….sugar-monkey” or “aye caramba” as substitutes.
Many kids with Asperger syndrome think about rules as black and white with no gray area, and so they may be stressed when peers begin to experiment with language. For children who are strict rule followers, you can introduce and explain all forms of bad language before they start hearing it at school and seeing it on bathroom walls. Having a talk about the meaning and usage of words is not likely to lead to these children using the words. On the other hand, when an adult role model screams ” !?!@#!” every time something goes wrong, what happens next is predictable.
Keep in mind that usage rules for slang are very specific, and include intonation and body language. Teaching about social context is critical: kid talk changes dramatically depending on whether adults are present. Typical children learn that they can say things to a young adult babysitter that they can’t say to their grandmother, but we need to teach this to child with autism.
Moving on to actual slang: The terms sick, mad, dope, fly, and epic are all positive descriptor words. Sick implies over-the-top insanely fantastic. Mad seems to be used to replace “a lot of ” as in,”I have mad homework “. It can also mean impressive as in “he has mad skills”. Epic is a superlative: the term epic fail is what happens when you lose a video game, or make a giant mistake. Calling someone a tool, or saying something is whack are both negative. Both have multiple slang meanings – if you don’t know the meanings, look them up! Other terms: crib (home), bounce (leave; “let’s bounce” means let’s go), and ride (car, as in the show “Pimp my Ride”). Tight can mean either “close” as in “we’re tight”, uptight and closed up as in ” my mom’s tight”, or stylish as in “those is some tight kicks”. Swag is a positive word meaning stylish. Saying that someone “killed it” means they did a great job, not that they committed a crime.
Another fun new term is Noob which is short for Newbie, or newcomer, which emerged from multiplayer online games, referring to someone who doesn’t know the social rules of the setting/game. Bromance is a non-sexual closeness between males. A frenemy is someone who you seem to be friends with, but who you don’t really trust. Some terms, such as Homie, home skillet, Shortie (or Shawtie) and props have urban origins. Shawtie is an affectionate term for an attractive female, but can also be used for a friend. Giving someone props means to give respect to someone. Junk is a current word referring to private parts on a male, or referring to a female’s “booty”.
Some teens with autism may start to pick up on new slang on their own, but it helps to have on-going open discussion of language with open-minded adults to clarify appropriate usage. Adults need to think carefully about how to teach language use, as children who behave like a parent Mini-Me will have reduced social acceptance.
Props to my friend and colleague Virginia for helping me with this post, she is mad fly!
When we first imagine a new baby, we dream of a happy family life, full of friends and laughter. We look forward to cheering our children on as they grow and achieve. We don’t look forward to our children spending an isolated childhood in a segregated special education classroom. But as we come to terms with a child’s disability, we hope that somehow we can find communities that love and accept our children.
The recent viral video by father Stuart Chaifetz reveals an ugly side of special education. Mystified by behavior changes in his usually happy child with autism, Mr. Chaifetz sent his son to school with a tape recorder in his pocket. The YouTube video contains audio clips of school staff telling Akian to “knock it off” “shut your mouth” and “shut up you bastard”. When Akian asks for reassurance and is laughed at, he began screaming. Mr. Chaifetz describes a ½ hour long tantrum which followed, in which Akian knocked over chairs and hit teachers. The 4 million views of this video suggest that average folks find this tape shocking.
I wish I was shocked to hear this story, but I’ve heard and seen too much in 16 years raising a child with autism, and 10 years working with kids with autism. I have met many adults who cannot find a place in their hearts for children with autism. Our kids don’t always respond to people who try to be friendly, even by smiling or making eye contact. Whether kids are verbal or non-verbal, they lack basic people skills to connect with people. They have annoying personal habits like picking noses, and wiping mucous and spit in places they don’t belong. Their faces, hands and clothes are often smeared with remains of recent meals. Children with autism move in erratic, compulsive ways. Kids all over the autism spectrum know when the adults they interact with dislike them, although they usually don’t understand why. Akian had no way to know what “bastard” meant, but he understood the tone which said that he was unloved and unacceptable.
Parents of kids with autism know how people react when their child behaves oddly in public, perhaps making strange noises and strange movements. We are wounded by the stares and outright questions, and this becomes a barrier to bringing the child to the playground, grocery store, and to church. Parents yearn for a safe place where our children can play and learn and be accepted.
I’ve heard a teacher say that a child with autism just “didn’t belong” in her mainstream classroom, and I’ve battled with teachers who wanted to exclude children with autism from field trips for forgetting one too many homework assignments. I’ve heard about a principal berating a child with autism who made mistakes in the lunchroom, and seen kids with autism excluded from outdoor recess. I’ve seen kids restrained and secluded in time out rooms. I’ve heard many teachers ranting about parents and blaming them for the child’s behavior at school. I’ve also seen teachers who care go the extra mile to include kids with autism in marching band and musical plays and who find a way to make things work. I’ve been in schools that include non-verbal kids with autism in mainstream classrooms, because it is the right thing to do.
Imagine being a child with autism: you are the focus of the energy of so many loving adults who are trying to change you. Your basic self is not acceptable, and needs fixing. Imagine the perseverance needed to tolerate 500 repetitions needed to learn how to roll a ball, or to learn to point to a picture of an elephant . To tolerate having your behavior corrected, again, and again.
Many idealistic young people want to work with special kids, but it is hard work, and sometimes boring and frustrating. Kids and parents are not always grateful, and when kids have increasing problem behaviors, it’s easier to blame the home environment rather than analyze one’s own actions. School staff need to follow through with mountains of small details like collecting data and following behavior plans, and must stay positive throughout contentious IEP meetings with argumentative parents. In the video, Akian’s dad implies that an Functional Behavior Assessment was done by a behaviorist and that a behavior plan was created. One assumes that the school staff received training during this process, but that these adults weren’t motivated to follow through with what they had learned.
Early in my experience as an “Autism Professional” I visited a school where many children were restrained in Rifton chairs for a good portion of the day. Staff wore black armguards to protect their arms from scratches and bites. I watched staff move two semi-circular tables around a child who was attempting to attack them. At this school, the teachers maintained quiet patience, despite reliance on antiquated methods of handling problem behaviors. I have seen many teachers with arms scarred by the fingernails of students with autism, who maintain a love for their students. Good quality behavioral intervention can sharply reduce high rates of problem behaviors, making the use of mechanical and physical restraints unnecessary. Ugly scenes of aggression and restraints motivated me to learn the skills needed to minimize physical control of kids, so we can all avoid the scars.
One of my favorite childhood books is The Secret Garden by Frances Hodgson Burnett. Mary Lennox is a spoiled and sickly young British girl orphaned in colonial India who returns to England to live on the estate of her bitter widowed uncle. Mary, her cousin Colin, and her uncle regain health through the magic of growing flowers, animals, and fresh air in the garden.
The book Heidi follows a similar theme, as the invalid Clara is healed by fresh mountain air, goat’s milk, and the companionship of friends on a visit to the Swiss Alps. In these books, adults are not truly evil, but tend to stifle healthy growth through their anxious attentiveness to illness. Mary, Colin, and Clara have no real disabilities or illnesses. Out in nature and away from adults, the children challenge each other, and learn to run and play and help each other heal.
These powerful stories of healing feed my attraction to animal rescue and farm life. I don’t trust that people will be able to be kind, patient or including of speical children, so I gravitate to the acceptance of baby animals. Like many parents, I yearn for a positive nurturing environment, where all children can experience life without criticism and negativity.
Last weekend at the farm, I heard a mother scolding her son “What are you doing, I told you to wash your hands, what are you, some kind of idiot, get going, wash them now…..” I was leading some disabled adults around the corner, and I paused at hearing the loud, ugly tone. I casually asked them to excuse us to make room for the wheelchair to pass by, hoping that might nudge them into some self-restraint.
Later I saw a mom with a son with Down syndrome, struggling to convince him to stop putting his hands in his mouth after interacting with goats. She didn’t raise her voice, although she was clearly stressed. I approached, wanting to distract him by letting him hold a chicken egg I’d just collected, and attempted to reassure the mom that it didn’t matter if the egg broke. Later, I realized that she probably feared contamination from the egg, as well. I was trying to distract him from putting his hands in his mouth in an accepting and positive way…..but perhaps I would have been more help by finding the hand sanitizer.
The contrast of the two situations stayed with me: the use of “idiot” as an insult to the son in the first, the self-conscious physical struggle of the second. Both moms were so fearful of contamination after contact with animals. I was sad that the worry created by dirt and germs blocked joy of contact with the natural world. It is certainly simplistic to hope that children, learning together about growing things, could somehow heal and grow straight and strong.
Parents of children with autism, like Mary’s uncle in the Secret Garden, have the potential to become bitter with grief. There is so much anger and pain in Mr. Chaifetz’s rant against his son’s cruel teachers. However, in a follow-up video, his voice is more hopeful when he speaks directly to his listeners and thanks them for their support and stories. In this fleeting moment of public attention, there is hope that people have gained a glimmer of understanding of what it might be like to be a powerless child with autism.
My posts have been pretty serious so far – so I thought I’d go a little lighter this time around. Here’s the latest info on what’s “in” for kids, including One Direction, Pottermore, Skylanders, Draw Something, Pawn Stars, Gotye, Hunger Games, My Little Pony Wedding, and Lego Mini-figures. Typical kids have radars for “what’s in”: they don’t need parents to to help them out with trends. But our kids with autism be stuck in their own intense interests and may be less aware of what kids their age are liking.
I haven’t always been very aware of pop culture, and I’m not a big fan of Buy Me That behavior from kids. Parents dealing with autism have enough financial challenges without having to buy every new toy, electronic gadget, and game system in the store. I am not suggesting that we should encourage our kids to engage in mindless consumption: we hope that they will be able to think critically about the culture of materialism. But before developing critical thinking, kids with autism need to learn basic conversational skills. We know popular culture impacts our kids: Barney, Elmo, and Dora are the first words of many children with autism. Visual images and music are highly motivating for kids with autism, so why do we abandon them when it comes to teaching conversation and social skills? Less verbal kids who are not ready for conversation skills may have more social opportunities when they can share excitement about current music and shows.
Parents of children with autism don’t have time to research current trends. Here’s the latest trends that I’ve been able to dig out. I’ve skipped over huge categories like sports–and there is still so much more to say about these categories!
Elementary Boys : Pokemon, Legos, Star wars, and Superheroes like Spiderman and Batman, are beloved by many boys, and a lot of girls too. You may not be as familiar with Skylanders: collectible characters which connect to a Wii platform, the more you collect, the more characters you have to play. The website Pottermore, with new interactive Harry Potter content, opened this week and is struggling to keep up with all the new member requests. Ninjagos, tiny battling Lego figurines on spinners, and Monsuno, another battling toy, both are linked to TV series and are popular among elementary aged boys. A 5 Below employee told me that $4 Lego mini-figures are so popular they can’t keep them in stock. She said that more Crazy Bones are sold when they are out of Lego mini-figures.
TV: Victorious, I-Carly, Phineas and Ferb, Monster High and American Idol along gain top TV ratings for elementary school kids, along with the long-time favorite Spongebob. For kids over twelve (at least!) you can add Glee, Family Guy and the Simpsons. All parents have questions about the appropriate age to phase in more graphic sexual and violent content, with tween 5th, 6th and 7th graders being in the gray area. These decisions are extremely important when kids don’t understand the complex social rules regarding what language to be used in what situation. Either pre-watch shows with questionable content, or at least watch them together so that you can take advantage of teachable moments. Movies with complex violent content like the Hunger Games and shows like Glee which introduce teen pregnancy and homosexuality are better waiting until at least middle school. Typical kids are usually aware of what’s popular in the teen demographic, even if they aren’t allowed to watch more mature content. Younger kids can learn about names of characters and basic plot, and can at times participate in a trend through Wii games Glee Karaoke and Just Dance even if they aren’t allowed to watch. Vampire and witch shows like Vampire Diaries are still in. Younger kids who haven’t watched or read any of the Twilight series will know about Bella, Edward, and Jacob. Big Bang Theory continues to get high ratings, it is especially appropriate for older Aspies who may identify with the quirky nerd ethic of the show. The Legend of Korra is the sequel to the Avatar, The Last Airbender and is a good bet to be popular among elementary boys. Doc Mcstuffins is a new favorite for preschoolers with an appealing theme about a girl who can talk to and heal stuffed animals. Reality shows like Pawn Stars and American Pickers are unexpected favorites of many kids.
Music: Older elementary school kids start to become familiar with many pop singers such as Kellly Clarskson (Stronger), Katy Perry (Part of Me), Adele (Set Fire to the Rain), Flo rida (Good Feeling), Pitbull, LMFAO, Bruno Mars, Taylor Swift, Lady Gaga, Rihanna, Drake….and we are all anxiously waiting for the release of the music video for Justin Bieber’s Boyfriend. I check Ryan Seacrest’s Top 40 website regularly to keep on top of new groups with unfamiliar names. Awareness of popular music often starts with preschoolers, who have delighted me with renditions of Rolling in the Deep (Adele), Moves like Jaggar (Maroon 5) , and Dynamite (Taio Cruz). We are Young by the pop band Fun featuring Janelle Monae will clearly take a permanent place among power anthems. Take advantage of your captive audience during car trips to therapy sessions and tune the radio to popular music. Selena Gomez is making the transition from tween star on Wizards of Waverly Place to an older teen demographic, and is taking advantage of all that publicity about her relationship with Justin Bieber.
Videos: viral videos are always popular, and sometimes there is a particularly hot video, other times I search and just find….puppies and kittens stuck in toilets and young children tripping and falling. The website Know Your Meme can keep you up to date on current viral videos and memes (the terms meme usually refers pictures with varying captions such as Lolcats). In searching for one “best” current viral video website, I saw that there were a variety of different lists focusing on misadventures of animals and children, popular music, commercials, and movies. Gotye (Go -Tee-Yuh) who performed on Saturday Night Live last week, could be a rising star or a one -hit wonder, but his music video is currently hot. His haunting song Somebody I Used to Know was featured on both American Idol and Glee last week. Older viral videos include bizarre favorites such as Danny after Dentist, Rebecca Black’s Friday, the Bed Intruder song, Shoes, Nyan Cat and Double Rainbow. Because many viral videos have sexual or drug related content or references, you will want to preview videos for tweens. However, once kids hit high school, if they’re anywhere in earshot of other teens, they’re hearing constant drug and sex related content, and watching a video together can offer an opportunity to sort out feelings and information on these topics. Adults may need to intentionally learn about Facebook, as viral videos and internet memes (pictures with humorous captions) are parts of teen culture that are not likely to disappear.
“Special Needs” parents may not have contact with parents who form life-time friendships on the bleachers at Little League while we hang with our autism friends at Miracle League. When kids are in special classrooms, we may not meet other parents at Back to School Night, music performances, and birthday parties. So when we try to strike up a conversation with other parents, they react to our anxious stories about the latest IEP meeting or our visit to the developmental pediatrician as if we were talking about the mating habits of pygmy marmosets. Talk about movies, music, and sports can fill the awkward conversational divide. For me, this is a particular issue, as I also work with kids with autism, and the conversation usually sags after “Bless your heart” or “You must be such a special person…..”.
Perhaps the best way to convince you of the importance of teaching kids with autism about popular culture is to invite you to think about the music, movies, and TV of your own childhood and teens. For those who grew up in the 6o’s and 70’s, imagine being unaware of the Beatles, the comic strip Peanuts, Star Wars, the Brady Bunch, or peace signs. I love my memories of going to see The Poseidon Adventure and Planet of the Apes with my best friend, and singing all of the verses to American Pie. I remember where I was when I found out that John Lennon was assassinated. Think about how popular culture played into so many of your childhood memories. I think we want that our kids to be included in the shared cultural memories of their generation.
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This past week, everybody’s been talking about the new CDC Autism statistics and the movie release of The Hunger Games.
The rate of Autism is now 1 in 88 children. 1 in 54 boys, 1 in 252 girls. Families with new babies nervously wait for each developmental milestone, hoping that their child won’t be the one in 88. Anxiety builds to fear when a child isn’t talking by their second birthday. Think of the mother in the Hunger Games waiting, with hope, despair, and defiance as Effie Trinket gleefully pulls her child’s name out of a glass globe. Families hope that some other child’s name will be read, and feel relieved and guilty if their child is passed over, at least this time.
There is a lot of discussion about Autism statistics. Many authorities have said that the rise in Autism is false, that the statistics just reflect a widening of diagnosis. But, when factors are teased out carefully, as in the California Department of Developmental Services data, it is clear that a broader diagnosis only accounts for part of the rise in Autism rate.
The dramatic rise in Autism rates is a mystery. So why aren’t young parents panicking? Why aren’t they demanding answers? This is a huge epidemic, and yet…….are we allowing ourselves to be snowed by these experts who deny that the epidemic is real?
The Autism crisis has a familiar feel. I lived in New York City during the peak of the AIDS epidemic. It was a scary time, and I jumped in as a volunteer caregiver for people dying of AIDS. I wore my Silence = Death t-shirt to ACT UP rallies to demand speedy treatment trials. People were dying- – fast – – and there was no time to wait for lengthy clinical trials, no time to wait for the political process to creep forward. Do our children have more time to wait?
During the AIDS crisis, friends and lovers, as well as people with AIDS, took to the streets. You never knew who would be the next to fall, so there was no point of safety. Gay men got tested for HIV every six months, never safe even with condoms. With Autism, expectant parents face their odds, hoping that their child won’t be that one in 88. Once children pass the developmental milestones, they are safe from the Autism epidemic, and parents can move on to worry about PTAs and soccer. The names are picked out of the glass globe once in a lifetime, so parents can be confident that they have been favored, and their child has been spared.
When I hear prominent authorities claim that there is no real rise in Autism, I wonder if parents are being deliberately confused, to stop us from demanding answers. If there is no rise in Autism, we don’t have to look for a new cause. If genetics are the primary cause, then no action needs to be taken, because there is no epidemic. If the dramatic rise is real, that means there is an environmental cause for Autism. That means there is someone to blame, but also that there is hope for change.
In the Hunger Games, President Snow said that “a lot of hope is dangerous”. What did he mean? If people have hope, they may become unreasonable, and demand change. In our case, they might demand effective treatment for their children. If parents of young children with autism knew that intensive early treatment results in 50% of children being at or near age level by kindergarten, would they demand insurance companies pay for treatments such as Applied Behavior Analysis? Why do parents accept that insurance doesn’t cover scientifically validated treatment for autism, when it covers treatment for other childhood diseases? Because it’s still a mental health disorder, rather than medical?
I don’t know what percentage of children get adequate intensive treatment. Mostly they get a little of this and a little of that. My own daughter had 40 hours a week of Applied Behavior Analysis from the age of 4, and we were lucky to be living in the State of Pennsylvania, which paid for it all. She started late: these days, children can be diagnosed between 1 and 2 years old, and start treatment earlier. Pennsylvania still pays for early Autism treatment when many states pay for much less. There isn’t enough money to go around, and Pennsylvania is gradually and deliberately whittling away at the treatment they pay for. I hope it’s enough.People say my daughter was lucky as she was born before the flood of new Autism cases. But lucky? Her name was drawn out of the Autism globe, too. But, she started intervention in time, and she is part of the lucky 50%. My daughter is attending a small charter high school, in regular classes.
When people say that Applied Behavior Analysis will turn children into robots, I swallow my rage. I’ve seen what happens when kids don’t have high quality intervention, so becoming a robot seems a minor risk to me. Again, the robot myth seems designed to throw parents off course. Autistic kids without quality intervention don’t do well. I’ve seen countless children punished, restrained, and trapped by inability to communicate and extreme problem behaviors. Children with bodies scarred from self-injurious behaviors. Parents with bruises. Brothers and sisters who have to hide in the basement during tantrums, and who never have friends over. Families who are lonely and isolated and exhausted, getting up everyday to start the battle one more time. I feel relieved, and a little guilty that my daughter has done well, as there are so many families and children still fighting for their lives in the arena.
Who is the one fighting for survival? Is is me, or is it my child? Up until now it has been me, but now I am waiting for her to take over.
ABA did not turn my daughter into a robot: she is a live girl with a heart, and a brain, and courage, who dreams of traveling to France, and going to college as far away as we will allow. I am waiting for her to start spinning, a girl on fire.
The Autism Games: may the odds be ever in your favor…….