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.
B104 night at Mayfair every Memorial Day weekend in Allentown is a great bargain: $5 entrance fee for nationally known acts. It’s usually a bit crowded, but where else can you can get $5 seats where you can see the stage? A few years ago we waited a couple of hours and got in the front section to see Jesse McCartney.
This year was Chris Rene from X factor, Chiddy Bang, and Boys like Girls. My husband and I thought it would be fun to go, and we particularly wanted to see Chris Rene from the X factor. We arrived to a mostly full tent after a rainstorm, and found 3 empty chairs in the middle of a sea of teenagers. As we sat, I saw a ripple of reaction from the teens around us: adults don’t belong here. Girls with long straight hair wearing tiny jeans shorts and crop tanks, smart phones in backpockets visible as they scan the crowd to see who’s here, who is arriving.
I see clues that these kids know each other, that they must be from the same school. Open mouthed smiling girls with braces check their phones, and look at each other and laugh. Girls sit in rows, a few braiding each other’s hair, wet after being caught in the rain. Boys sit behind in groups, a brave girl or two sitting with a date in the boundary. Finally, Capcee starts the warm-up music: “Teach Me How to Dougie”. A couple of teens stand up and try out a couple of dance moves, scanning faces and gauging reactions to each movement. Everyone knows words of the songs , they know which parts to sing aloud, locking eyes briefly and singing phrases at each other. Girls ignore the boys, until more dominant boys show up at the last minute, striding right to the most popular girls.
By the time the DJ Capcee gets to “Low”, by Flo Rida, the kids are all up: lines of carefully set chairs block their forward surge. My daughter gets up to dance, but I caution her to stay back, sensing her danger in not belonging. While my daughter is standing, a girl brazenly comes and sits in her seat next to me – I pull my daughter back down into her seat to re-claim the space, and the girl hops over into a boy’s lap. There are fleeting touches, and a couple who might be graduating middle school risk a first kiss. Someone starts throwing chairs into a pile, helter skelter, to make room for the arriving kids, who snake forward. They never look at us, but their bodies tell us we are invaders in their territory: they wall us off with the chair pile. I freeze when someone taps my shoulder from behind, knowing that we are blocking the path, and parents eyes don’t belong here . The crowd shouting: “Sex Sex sex sex” , along with a song that I have never heard before, but that they all know well.
Girls turn to each other and make eye contact, singing phrases, imitating gestures: Applebottom jeans, boots with the fur…lowlowlowlowlowlowlow. One girl is suddenly spit out from the group, and connects with friends on the edge explaining with animated gestures. As the chair barrier piles up, my invisible family is a rock in the stream, as teens file around us to join with the larger group. Kids slip and slide, climbing over the chair pile to get past , and suddenly the prettiest, best dressed girl throws a chair in our direction with barely restrained viciousness.
We finally give up and head for safety in the periphery. We excuse ourselves to pass through a group of teens dressed in black: we make eye contact and smile. They smile back with gentle understanding, and suddenly we are visible again. After we move, the crowd continues to heat up, bumping each other, standing on chairs, pumping fists, pushing forward. I take a tour around the crowd, and I see piles of chairs all the way across the crowd. It wasn’t personal.
As the last Chiddy Bang song comes to an end, a security guard wades into the vortex of the group of teens, right into the spot we left, and says something to the charged up teens. Suddenly, the group scatters, quickly leaving the concert as if with one mind. A Mayfair official gets up on stage and tells the audience they must follow rules: no climbing on chairs, no pushing forward. But the intensity is already diminished, the danger is over now. The crowd settles listening to calm pop music, and event volunteers come and rearrange the chairs.
Capcee was a master at revving the kids up, but the security guards knew just how much intervention was needed to allow a good time, but prevent a riot. This wasn’t even a newsworthy event: concert review don’t mention any near melee at the concert. This is just everyday group behavior at a concert.
I have so many questions. How can I possibly teach a teenager with autism safe concert behavior? I had been thinking to invite some of the girls from my social skills group to this concert, but I hesitated. Caution…..often a good thing! I was surprised to see so many young teens without any adults checking on them. Where were those helicopter parents? If there were any parents of these kid at Mayfair, they were so far away as to be useless. The security did manage to prevent real harm, but I can’t imagine that the parents of these kids would be okay with this. I chose to bring my daughter so that I could teach her — well, I really thought it might be fun for her– but I couldn’t let her move into such a complex social situation. We remain more connected to our kids with autism, who, like the kids wearing black, are vulnerable and have no protection from the pack.
Here’s a list of popular songs that come up at dances and other occasions. This list is somewhat different than just “what’s in now”- some songs are important in the context of school dances and parties. I’m sure I’ve missed some.
- Lady Gaga, Just Dance, Telephone
- Beyonce, All the Single Ladies
- Mary J. Blige Family Affair
- Sarah Bareilles, I’m Not Gonna Write You a Lovesong
- Chiddy Bang, Ray Charles
- Jennifer Lopez On the floor
- C&C Music Factory, Everybody Dance Now
- OutKast, Hey Ya
- Pink, Let’s get this Party Started
- Nelly, Hot in Heere
- Miley Cyrus, Party in the USA
- Taio Cruz Dynomite
- Bruno Mars, Grenade
- Ciara, 1 2 step
- Right said Fred, I’m too sexy
- Justin Timberlake, Sexyback
- Rihanna, We found love , Birthday, Don’t Stop the Music
- LMFOA Party Rock Anthem, Shots, I’m Sexy and I know it
- Flo rida, Low, Right Round, Club Can’t Handle Me, Good Feeling
- Cali Swag District, Teach me how to Dougie
- Cee-Lo, Forget you (there is another version with F you)
- YMCA/Cotton Eye Joe/Electric Slide/Chacha slide /Macarena
- TikTok, Ke$ha
- Eiffel65 , Blue
- Journey, Midnight Train (aka Don’t stop believing)
- Katy Perry, California Gurls, Firework, Hot ‘n cold
- Green Day, Time of Your Life
- Maroon 5, Moves like Jagger
- Black Eyed Peas, Imma Be, Boom Boom pow, Let’s Get It Started, I Gotta Feeling
- Montell Jordon This is How we do it
- Enrique Iglesias, I like it
- Justin Bieber, Baby
- Reel2reel, I like to move it move it
- Shakira, Hips Don’t Lie
When my daughter was diagnosed with autism, someone gave me the essay “Welcome to Holland. Some people believe that this essay about raising a child with a disability is comforting. I found it annoying. The author, Emily Perl Kingsley, compares raising a child with a disability to preparing for a trip to Italy, and getting off the plane and finding yourself in Holland. I know that the author had good intentions: she didn’t want people to be so consumed by their child’s disability that they miss the wonderful things about their child. But you just can’t hear that message in the early stages of angry, raging grief.
When I read the essay after my daughter was diagnosed with autism, I reacted to the part where she said: “they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It’s just a different place.” To me, autism has not been just a different place. The first years were terrifying and lonely.
The first years of autism are nothing like Holland, with beautiful tulips and windmills and delicious cheese. When parents step off the airplane of diagnosis into Autismland, it looks pretty barren. Many families who have a child with autism feel isolated and separated from the communities of school, church, and recreation. Even with an accepting community, how many would return after their child had a screaming, flailing tantrum? Or even if he just loudly quotes Spongebob in a somber moment? Parents of typical kids get the group tour with jolly companions, drinking and laughing as they journey from kindergarten registration to college application. Parents of kids with autism are on their own in a strange inhospitable country. With a diagnosis of autism, it wasn’t just about whether my child would talk, but about whether she would have a future: would she ever be able to work, get married or have a family? For a parent, this treeless, lonely country looks nothing like Amsterdam or Rome.
Even for families of high functioning kids who learn side -by-side with typical children in regular education, there is a huge chasm of separation. Once when we were preparing an after-school activity, one mom said to me,”I don’t know what I’d do if I had a child like yours”. Her statement has bounced around in my head for 8 years, and I remember it every time I see her jogging down the road. She was commenting on the deep canyon that separates her world and mine. I could see her micro-expressions of unconscious disgust and superiority, that’s what stays with me.
Some of the separation from the mainstream parents reflects my own social awkwardness….even before autism, I never knew how to do the normal mom talk about Longenberger baskets or jewelry parties. Some autism parents have the knack of making others feel at ease and fitting in. For the rest of us, school events are particularly stressful. Autism parents go on more field trips than the other parents, and this time of year I hear the field trip stories from parents every day. The brave parents of kids with autism tell me about the pain of watching their children who can’t read the social cues. They tell me about watching when no one chooses their child to be a partner on the bus. They see the other parents watching the lunch drama, when all of the kids choose where to sit. The other parents don’t want their child to be forced to sit next to ours, and wish we would accept sitting at the unpopular table. During field trips and class parties, parents are finally granted their foolish wish to be a fly on the school walls– and they see the vast ocean that their child with autism needs to cross to be accepted.
I spent the elementary years helping out in Girl Scouts, backstage, and on field trips. It would have been easier if I had been one of the moms who was naturally good at the PTA thing, always chipping in to help with the endless fundraisers. Maybe that would have given me some social capital. In those years, I thought I had some sort of special dispensation for having a child with a disability, and I just didn’t realize that I didn’t get a free pass at all — rather, I needed to do twice as much, while not talking too much about my other life of therapies and supplements. Within our own networks, autism parents overlook forgotten phone messages and dropped balls, but the rest of the world is not so forgiving.
Participating in activities required all of my acting skills, putting on a game face to cover up my intense anxiety. Like the time that an elderly Girl Scout came and showed the Brownie troop her ancient collection of historical uniforms. I walked my fidgety child around the perimeter of the room, around and around, through the endless presentation, knowing that all the moms were watching us. The very first girl Scout meeting, I remember my daughter standing on the tables and lying on the floor. I needed to gather my courage before every meeting. We went on overnights, camping in tents, on a battleship, in a church basement, at the Game Preserve. The popular clique negotiated who slept next to who, and ran off to the bathroom together to gossip. I comforted the crying girls after lights out. Girls Scout rules don’t allow adults to sleep in the same platform tent with girls. Would the lantern outside my door stay lit all night? Would the girls wake up if their tent-mate had to use the latrine? Would anyone get lost in the woods in the dark? I slept fitfully, listening for every noise. I came home from each experience exhausted from managing other children’s needs while trying as best I could to help my own kid look normal. Or less different.
We moved on to other activities in middle school. We did High School Musical and Aladdin. We went on an overnight band trip . I kept supporting backstage, finding missing props, and giving cues for entrances. It was fun, but still grueling. The mommy cliques dwindled as the scornful glances of the young teenagers began to emerge. For many families with autism, puberty means going deeper into quicksand. But for us, it was time to start stepping back.
This year in high school, there was an overnight trip with school: 3 long days. None of the parents went on the trip. I didn’t see whether anyone sat with her on the bus, but I saw the exuberant Facebook message she sent on her Kindle from the bus: “On my way to Boston, yay!” I only texted the teacher for reassurance once, but I was still drained by the time we picked her up. The teachers said she had fun, but she doesn’t believe in sharing unnecessary information with adults, so we didn’t hear much detail.
Stepping back takes different forms. The last three years we’ve been in the Young Playwright’s Festival with Touchstone Theatre. The first year I was a helper, but last year I took the plunge and I auditioned. I was no longer a spectator and observer, there to give direction to my child –this time I got on stage too. I was too busy with my own role as a spinning wall and dancing tree to worry about anyone else. This year we were mourners in The Sad Story of Mrs. Donut Person, by Biance Acosta. Making people laugh is great fun.
It’s been a long journey, and as I look back, I am amazed to see the rough terrain that we crossed. The journey was not what I expected, but not the worst that I feared. There’s still a ways to go, but now I can stop once in a while to find a flower sprouting up between the rocks.
We can only be said to be alive in those moments when our hearts are conscious of our treasures. ~Thornton Wilder
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.