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7 Tips for Promoting Requests from your Children
By Elizabeth Jordan MA, BCBA
When I first meet a family to provide behavioral services, my objective is to identify what their primary concerns are. I’ll ask, “What keeps you up at night?” The most common response, “I want my child to be able to tell me what they want.” It is a skill so many of us take for granted but when a child with autism says they are hungry, in pain or need your help for the first time, it can be life changing. While every child is different, there are seven practical strategies that can really make a difference.
- Know your child’s skill repertoire:
- When a learning opportunity presents itself, it is especially important to know what tools will ensure their success. If your child is not making any vocal requests, you might want to start by requiring only an utterance or by having them point to the item before you let them have it. Pointing can be a great a tool because you can easily place your hands over theirs to make the correct gesture.
- Maximize success by assessing for clear signs of interest in items/activities. Is your child looking at the item or reaching for it? If the item is in plain sight and they are not showing signs of interest, they are less likely to put forth the language to acquire it.
It is my hope that you will find these practical tips helpful. Above all, keep learning fun!
Elizabeth Jordan is clinical director of Autism Outreach Southern California LLC, which provides Applied Behavior Analysis therapy for autism and related disorders.
Ten Tips for Playdates with Kids of All Abilities
By Cara Koscinski, MOT, OTR/L
Playdates are beneficial for ALL children to practice critical social skills on which future relationships will be built. The benefits of playdates include: increasing confidence; improving social decision making; and practicing skills in an adult supervised yet natural setting. Playing together allows kids to be a part of the action vs. being quiet observers. Play typically develops in a natural progression from individual play to parallel play (when children play next to each other), and finally to interactive/social reciprocal play. Many parents of children who are typically developing and those with special needs set up playdates to encourage the building of critical skills and friendships. The most important lesson learned from playing with a variety of children is that EVERY child is different and special! Throughout life, we meet and interact with people of all shapes, sizes, and abilities and learning from each other can truly enhance our life.
Here are some tried and true tips I recommend for setting up playdates with children who are on the autism spectrum:
- Practice playing. It may be hard to believe, but the act of playing doesn’t come naturally to some kids. For example, children with autism often have difficulty with taking turns, having conversation, and interpreting nonverbal gestures. Practicing and explaining this to your child may help him to feel more comfortable. Together, discuss strategies that can be used to help facilitate play. What is a facial expression? Make different faces and ask your child to guess your emotion.
- How do I find children with common interests? Teachers are amazingly insightful and may provide wonderful help to identify the children who tend to play together and enjoy similar interests. Volunteer in your child’s classroom to see who your child is interested in playing with. Additionally, birthday parties are great opportunities to observe those children who may be a good match for a playdate. Clubs and activities allow children with similar interests to enjoy each other’s company. My son showed an early interest in chess. I often arrived early to pick him up from chess club and to determine who showed interest in my son. The same is true for Lego club, music classes, art, or sports.
- Remember that parents of children with special needs are used to answering questions about their children and are often quite comfortable discussing ways to help create successful social interactions. Also, be mindful that many families’ schedules are busy but a child with special needs may have additional appointments for therapy, medical, and developmental concerns. Be flexible in scheduling and do not be offended if the playdate needs to be re-scheduled.
- Shared interests can make a playdate successful. Identify what the children have in common. Build activities upon mutual interests. So, set up Legos and build Angry Birds or Minecraft structures. If the children like the same movie, set up puzzles, art, baking, or sensory play based on the movie. Consider meeting at a location such as a park or museum. Siblings should not be a part of the playdate to allow for targeted friendship building between the two participants.
- Make a plan and then review it with both children who are participating. At the beginning explain what the playdate will look like: First, we will work on a puzzle, and then a snack, etc…. Many children who have special needs benefit from a visual schedule and knowing exactly what is coming up next. ALL of us enjoy predictability and feel more confident with a specific plan in place. However, be flexible if any difficulties or disagreements arise.
- Consider food allergies and sensitivities. When planning a snack contact the other child’s parent to determine which foods are safe for both children. It can be very meaningful for the other parent and is a critical step to avoiding potential life-threatening reactions to foods. Do not be offended if the children do not eat what is set out for snack.The kids may just be too excited to eat!
- Be mindful of any physical limitations. For example, many children with sensory issues do not prefer to get messy, dirty or wet but they can be super at doing other things such as building or creating. It’s always a sensitive topic to talk about someone’s weaknesses, instead ask, “What is Billy great at doing?”
- Provide adult supervision and support throughout the playdate. Since children of all abilities have different personalities, disagreements may arise. Consider ways to resolve conflicts such as asking both kids to take five deep breaths or closing their eyes and counting to ten. Make sure to ask the other parent which strategies are used when their child becomes stressed or upset. Preparation is a key ingredient in successful interaction when facilitating a playdate.
- Begin with short playdates of an hour. Keep the first playtimes shorter until the children become more comfortable with each other. Consider having more short yet frequent play times with the same friend since relationships can take time to build. It’s important to end on a good note. So, if the children are in any type of conflict, help to facilitate a peaceful ending.
- There is NO such thing as a perfect playdate! Do not put unnecessary pressure on yourself. Both typically developing kids and children with special needs are learning while practicing play and social skills. When learning a skill we all make mistakes. Our children benefit from every social interaction opportunity. Give yourself a pat on the back and enjoy watching new friendships bloom and develop.
Just the Three of Us
By B. L. Pike
I'm part of a three-way team that makes managing my adult son's autism easier. Each of us on the team has skills that make us indispensible to one another. My son, Tony, is the first member. He contributes his desire to learn focus and control. My job as Team Member Number Two is to encourage both of my fellow team members and, when we're out together in public, to carry the supplies. Like dried liver treats and doggie pick-up bags. Yep, you read that right. Team Member Number Three is Tony's autism service dog, Dude—a big poodle mix with fluffy golden fur, a mellow disposition, and a surprising sense of responsibility for all of us, but mostly for Tony.
It can be difficult to get a realistic picture of what autism service dogs can do, and I know why. Those of us living with autism have a need to hope big—for better communication with our kids, for friends to enjoy and appreciate them, for widening horizons for their future in a society that undervalues the contributions they make. Whenever we hear of new interventions for autism, we bring these big hopes and expectations to it. No wonder we're so often disappointed!
When we first considered a service dog for Tony he was already an adult, able to tell us that he wanted a dog to help him walk through crowded places. Once Dude joined our family we discovered other tasks he can perform. Dude will lay his chin on Tony's lap to calm him, lie next to him or even on top of him for deep pressure. He will back up between Tony's legs and sit facing outward, giving Tony space in front of him to feel safe. Dude is also an alert dog, sensing Tony's rising emotional state before we do. He puts his paws up on Tony's shoulders and licks his face—a distraction that's hard to ignore! Though Dude is not trained for tracking, other autism service dogs can help locate wandering kids.
As for those huge hopes, it's important to know what service dogs can't do. They can't physically restrain a raging or wandering youngster, or guide a child without the assistance of a responsible parent to act as handler. Though some families tether their children to the dog, it's never a safe option unless a responsible handler has a hand on the dog's leash. No dog can make judgments on an adult level, especially about a child's safety.
Some kids are indifferent to dogs, or even afraid of them. For those children a service dog would be another problem instead of an answer. Tony loves and responds to animals, and though he can be destructive when he's having a meltdown, he's never hurt an animal or another person, making a service dog a good bet for him. You can read more about our experiences with Dude here.
Finding a well-trained dog can be harrowing—there are programs offering service dogs for large fees, but delivering poor results. If you'd like to consider an autism service dog, eligible training programs can be found through the accrediting organization Assistance Dogs International.
Guest blogger B.L. Pike is a columnist for the online magazine, Literary Mama.
Oreos — A New Currency
By Annie Lubliner Lehmann
Jonah lumbers in unsteadily, using the tips of his fingers to carry a 32 sports bottle tray of water by its shrink wrap. At first glance he looks like any other six foot two, 29 year old delivery person. But he is accompanied by a woman who prompts him every step of the way.
“Here Jonah,” she says pointing to the space I had cleared in the garage. “Put it here.” It’s a good day and he listens.
I give him a hug, after all I am his mom, and invite him in for the non-monetary tip he knows to expect — Oreos. Cookies. Now that’s a language Jonah understands.
Jonah is non-verbal, requires 24/7 supervision, and has no attention span or impulse control. He has severe autism and even in the best economy hasn’t been able to handle a job— not that we haven’t tried. Still I don’t know that I can blame him for running away from every paper shredder and hanger sorter he has been handed.
Throughout the years we tried our best to think “outside the box,” to be honest about who Jonah was and what he was capable of doing. And though we worked hard to encourage use of language, interaction and independence, the gains he made, modest at best, often left us feeling like we were banging our heads against the wall.
At one point we talked about
starting a farm cooperative perhaps in partnership with one of
Michigan’s many universities. Jonah likes animals and being physically
active, especially outdoors. Staff could be drawn from students
interested in special education, psychology, social work, various
therapeutic fields. Agricultural students could run the farm while
business students could manage the accounting end of things. But when I
proposed the idea to the administrators who oversee such decisions, I
was told, “the days of funny farms are over.” By that time, having doors
slammed in my face had become old hat.
As Jonah approached his 18th birthday we struggled but eventually set up for him, a good long-term living situation with fitting roommates and responsible caregivers. That he lives less than a mile from our home didn’t hurt matters.
Still there were 16-hour days to fill, no small challenge considering that Jonah is a shoot from the hip young man who does what he wants, not what he is told. Work programs rightly consider him “too high maintenance” for hire, and day programs, while willing to take him, remain depressing warehousing affairs. What could we do?
One afternoon as I was loading heavy cases of bottled water into my car, I thought of my able-bodied Ashton Kutcher look-a-like son. If I hated lugging bottles in and out of my trunk, certainly there had to be others who felt the same way. What if Jonah and his aide, the one he is always required to have, delivered trays of water bottles to homes and offices?
Jonah is a longstanding devotee of warehouse clubs with their free food samples and aisles of items he loves to look at in food magazines and catalogues. Heavy lifting is often considered therapeutic for people with the kind of sensory issues Jonah has, and besides water bottles being unbreakable, they are rarely urgently needed, an accommodation that would be helpful on Jonah’s occasional “bad days.”
“We could do this,” I told my husband.
I put up a website, made cards and hung posters accruing a list of 35 customers, many of them friends and neighbors. All really do appreciate the service Jonah provides. The money he makes in tips, which is negligible after paying for gas and mileage, is almost beside the point. He is busy doing something purposeful within the community, becoming reacquainted with people who haven’t seen him in years.
Nothing is perfect. So many variables go into shaping a life and Jonah’s story is his alone. But despite the skyrocketing autism statistics, the advantage he and others of his generation have, is that they are being raised in parental homes with families who can have a hand in staging improved futures.
Even today, it is hard to look at Jonah and not wonder what he might have become, as a person, husband, father, and professional. But at 29, I see, a reasonably happy and content young man munching on an Oreo, and am grateful for the perfect compensation we have figured out for his little bit of a job.
Guest blogger Annie Lehmann's memoir, The Accidental Teacher: Life Lessons from my Silent Son, recalls the challenges and lessons of raising a son with severe autism. She's written essays for The New York Times and Detroit Free Press, and is working on a novel. She blogs at annielublinerlehmann.com.
The Things We Take for Granted
By Annie Lubliner Lehmann
My son Jonah is 30. Ashton Kutcher handsome. Silent. A human being who has never sinned in his entire life. And yet over the years his autism has given us a run, (I should say at breakneck speeds), for our money. Sleeplessness. Seizures. Unexplained self-injurious behaviors. But last night, during our weekly visit with him, he had no idea what kind of gift he gave me.
Typically he comes to our home every Sunday night for "Sabbath dinner." Every Friday night I prepare a Thanksgiving-grade meal, with plenty of leftovers. From homebaked bread, soups, and main courses, to desserts, Jonah gets his "Shabbos" meal, a couple of days later.
Yesterday our schedule was such that we went to his house to visit him. It was 8 p.m. He was falling asleep on the couch watching a Disney movie. He allowed me to snuggle up to him, (not a given when someone has autism) and sat holding my hand and resting his leg on mine. Then, after a few minutes, he stood up, walked to his bedroom, got into bed, pulled up his blanket and went to sleep.
He read his body cues. He knew what he needed and followed suit. By himself. Understanding that bed is the best place to sleep. No one told him it was time for bed. It was an 100 percent independent activity that he chose.
It may not seem like a leap for someone who is tired to get into bed and go to sleep. But seeing him do this filled me with joy. He lives a life with shadows, one on ones, someone always supervising him. He has to. He doesn’t understand danger and needs that level of supervision. But that he was able to judge his own exhaustion and do what was necessary to properly address it, was something I’d never really seen before.
It’s not often that a parent will say, “My 30-year-old son was tired and went to bed.” But that’s what he did. I kissed him goodnight, the way a mother of a small sleeping child might, and left feeling like I had been given a gift. A show of independence, a rarity in my adult son’s life.
Reprinted with permission of Annie Lubliner Lehmann.
Surprise at Sea
By Rachel Roberts
Parents often fall into the trap of thinking they know how their children will react to a certain situation.
“Oh, he’ll just love this!” you say with excitement in anticipation of an activity or a gift, only to be left with disappointment when your child quickly loses interest. I know I’ve bought my share of “wow” gifts only to have them outstaged by a 25 cent bouncy ball that lights up.
More often, for parents of kids with special needs, the opposite also holds true. You find an excuse to not meet up with neighbors or friends for an activity because you think your child might not be interested or even worse, he or she might have a tantrum and “ruin” it for others.
I am really guilty of this with my daughter Abby, who is autistic. Although she is six years old, developmentally, she is behind her peers. Because maybe we’ve had a couple meltdowns or situations where we really didn’t know what to do, I have fallen into the trap of hoping for the best, but secretly expecting the worst.
We recently returned from an amazing vacation with friends in Kiawah, South Carolina. They suggested taking the kids river kayaking. “The kids will love it,” they said. Behind closed doors, however, my husband and I made strategic plans about what to do when Abby quickly tired of it, or how to make sure she was safe when she began fidgeting in the boat and it became unstable.
We embarked on our kayak adventure very tentatively – I would even say my husband was dreading it. He expected that, as had happened in some situations in the past, we’d have to figure out how to “handle” Abby.
We arrived at the dock and put on our life jackets and watched as the other family loaded into their boats. My husband placed Abby in the front of the kayak, quickly got in and shoved off from the dock, before Abby could protest. My son and I followed.
My husband and I stole a quick glance at each other – so far so good, right? We made it onto the boats. He couldn’t see her face because he was behind her paddling, and kept glancing my way to look for reassurance as my boat paddled along side.
When I looked over at Abby in the front of the boat, her expression told me that I had been wrong. Really wrong.
In that moment, her smile exceeded every expectation we had for that day.
It was an amazing couple of hours. We saw dolphins surface right in front of our little kayaks. We saw egrets and herons and mud crabs that were so close we could have touched them. We laughed and splashed and swam.
It was a huge reminder to us that just because we have a child with special needs. we can’t lower our expectations because of a few bad experiences. Kids like Abby are just like any other. They change. They grow. Sometimes they have bad days. They will be interested in certain outdoor activities more than others, just like sometimes a bouncy ball can trump the newest cool toy.
While our friends pulled their kayaks out of the water and excitedly talked about seeing the dolphins, my husband and I quietly talked about how excited we were to see Abby’s smile out there on the boat.
We will continue to use nature to help connect with Abby in new ways. But for now, consider our expectations blown.
By B.L. Pike
Thirty-two years ago we adopted our son with autism. Tony was 15 months old at the time and already labeled a child with serious disabilities. Eventually the diagnosis was narrowed (at least, as narrow as that term ever is) to Autism Spectrum Disorder. We sought out the resources we would need, including the community of other parents raising their kids with this condition, and the voices of older "high-functioning" young people who were themselves living the day-to-day reality of autism. What we hoped for was a group of concerned adults, mutually supportive of each other's struggles, and throwing their combined weight into advocacy for the good of all.
But that is not what we found.
What we discovered instead was a confusing "spectrum" of conflicting theories of cause, treatment and cure, with segments of the autism community staunchly defending each one and tearing down all the rest. Not just for their own needs, but too often against each other. The dictionary definition for that kind of "spectrum" is a "position on a scale between two extreme or opposite points."
This was nothing like we'd experienced before. Tony was our ninth child, our seventh by adoption. And many of those were disabled as well, each one drawing us into a different community of shared concerns: deafness, diabetes, learning disabilities. The parents in each of those groups had their differences in the ways they handled the challenges they faced, but when they came together, it was to encourage one another with positive motivation and practical coping tips. All of them shared certain characteristics that made this mutual encouragement crucial—but so did the parents in the autism community:
- Disappointment, not only with the crush of limitations to their dreams and aspirations for their families, but with remedies that had been tried and found lacking: drugs, diets, learning strategies, promising treatments of all kinds.
- Denial—a kind of fear that is the opposite of hope—about their child's diagnosis, the exhausting work that lay ahead of them, and the rejection they felt from a disapproving public.
- And guilt, falsely convicting us of poor parenting or genetic failings, shouting "What if…?" as though we could change some action in our past and suddenly produce a child who was perfect in every way. As though anyone could.
So why all the extremes and opposites in the autism community? We puzzled over it and theorized. Maybe because the causes of autism remain so confusing and complex—always just out of our reach. Or perhaps because the professionals themselves in this field seem sometimes to be at war with each other. Or because of the rise in the numbers of children on the Autism Spectrum, the strident warnings about an emerging autism epidemic of gigantic proportions. Whatever the reasons, we couldn't escape the sense that parenting on the Autism Spectrum was indeed characterized by the "extreme" and the "opposite."
Fortunately, there is a second definition of "spectrum": the bending of a single, bright light to display the rich span of its many colors—not in opposition to one another, but arrayed in perfect harmony, each hue blending with the next in a continuous sweep of grace and strength. Surprising. Commanding. Irresistible.
Even now, with our son grown into a man, handsome and talented but still in need of oversight, what we long for most is connection. Attraction, not opposition. Our hope—our need—is that all of us who have children on the Autism Spectrum, along with the children themselves, will truly become that spectrum, bending our light together across the entire range of our experiences—harmonizing, enriching one another's lives with grace and strength.
Guest blogger B.L. Pike lives with her husband and kids in the Arizona desert. She is a columnist for the online magazine, Literary Mama.
A Snail's Pace
By Rachel Roberts
Even though I love movies, I always feel guilty taking my kids to the big summer kids flick – shouldn’t we be at the pool? Or outside playing in the yard? Well, if you’ve ever lived near Washington, DC, during hot and humid July, you probably know the answer to those questions.
No — sometimes it is just too hot.
But, I’ve also discovered this summer that using those movies and characters that kids love can help bring them back to nature. You see, my daughter has autism, and has never been at all interested in what’s happening outside. Her world is hard to reach and is different than ours. Though our family is regularly outside playing or tending to the garden, she usually runs off, content to re-enact her favorite princess scene from a TV show.
Kids with special needs regularly relate better to characters on TV and in the movies. They can watch those “friends” without having to talk back. Many times they “script” what they see, or repeat lines from shows and movies. They can then apply that situational script to the real world where maybe they can’t find the words to communicate on their own.
This summer on one of those really hot days, I took my son and daughter to go see Turbo. It was a great story about a snail that has big dreams of being fast. The movie starts out with Turbo and his fellow snails “working” in the tomato garden.
It got me thinking — my daughter is autistic and has never shown any interest in our backyard garden, but maybe I can use Turbo to pull her in. I went out and found Turbo snails (excessive merchandising isn’t all bad) and added them among our own tomato plants.
I gave her a snail to call her own, and showed her that Turbo and his friends were in our tomatoes too, waiting for her. What happened next may seem ordinary, but to a parent who is struggling to connect a child with special needs to nature, it was a breakthrough.
My daughter picked a tomato for her snail.
This little girl who, for three years, wouldn’t even touch any vegetable we had picked, was now picking it herself.
It’s a lesson our family has now been applying all summer. She was scared to go in the ocean, so we brought along Ariel the mermaid. She didn’t like the texture of the sand, until we buried a treasure just like Jake and the Neverland Pirates.
So even though I want my kids to get outside, for a kid with autism, I’ve learned to use media to bridge the two worlds. We bring the familiarity of her favorite make-believe friends to make the natural world much more real to her.
Have you experienced a way that media has helped your child — special needs or not — get more excited about connecting with nature?
A Sister's Love
By Sophie Spiegel
My sister, Miranda, was diagnosed with autism at the age of six. Throughout most of my childhood, I was overcome with fear, anger, and resentment. I was embarrassed to be out in public with Miranda because a tantrum was inevitable. I vividly recall peoples' judgmental eyes as this ten-year-old girl tossed herself on the ground for no reason. I never expected her to sneak up behind me and smack me in the face and I did not understand why she wanted to hurt me or embarrass me in public.
It took me years before I understood what it meant to have a sister on the autism spectrum and today I honestly still do not know everything. I learned to accept it was not her fault and it still is not her fault, but it is simply just who she is. She is an energetic and funny person who I am pleased to call my sister. Miranda's disability is one of the motivating factors that led me to pursue my career in psychology.
The experience of having an autistic sister has taught me so much. Being the younger sister and helping your older sister reveals a sense of accomplishment because autistic or not, it rarely happens that the younger sibling has helped the older one. Miranda has also taught me to love unconditionally despite the differences we have. If there is something that I am most proud of, it is that she is my sister.
When Miranda smiles, I know not to ever be ashamed or embarrassed about her. I love her regardless of what anyone thinks or says. I would not be the same person I am today if it were not for my sister. It took me a long time to realize what an influence Miranda has had on me and I am grateful for her everyday.
Sophie Spiegel is an NYU student in psychology and daughter of Different Roads President Julie Azuma. This article is reprinted with permission.
By Jeff Stimpson
When the battery of my 14-year-old Alex’s iPad runs low an image comes on the screen that I’m sure I’ll see in my own mind in my last moments: a dark battery shape with a single thin red stripe, and beneath it all a lightning bolt that seems to say, “Just a little more time, please.”
“Alex, you’ve got to plug it in. It is dead. You’ve got to plug it in.”
“Got to plug it in,” he says, “plug it in.”
He's 14. All he has to do is sit there and give up the privilege of walking around with the thing. Alex isn’t feeling well – hot and sniffly – so he’s just sitting there anyway. Sniffly is also why Alex has been sitting there with the iPad all day until the screen goes dark and the little red stripe appears.
The iPad, like so many of Jobs’s creations, sucks juice through two pieces of white plastic, one a white cord and the other a square box. I plug the end of the white cord into the iPad while Alex sits on the couch. He pulls it out because it doesn’t belong. Steve Jobs never in his life had a day like many Alex has had.
“You have to plug it in!”
“Hey Ned, can you take a break from whatever you’re doing and show him? Maybe he’ll listen to you.”
Ned is Alex's younger brother; he's what they call "typically developing," which for Ned is turning into kind of a nightmare. At least to hear him tell it.
“Why would he listen to me?" Ned says. "Fine – I’ll just drop everything and help Alex!”
We’ve sheathed Alex’s iPad in a hard case of black plastic called The Defender, and when you want to plug the iPad or Ipad into juice you slide off a piece of the back section to expose the hole where you insert the jack.
Alex is 14 now, and though I could say to him “Expose the hole where you insert the jack,” I just tell him again that the thing has to be plugged in and turned off for a while to charge.
“I’ll be right there, Alex.”
I feel like another dad in another family would make sense of this and make it work. Alex comes up to me with the piece of the black plastic back cover still on.
“You have to plug it in, Alex. Watch TV for half an hour while it charges. It’s just half an hour. I can’t change the laws of physics, Alex.” This is my offer to pollute my household for thirty minutes with the noise of Elmo.
Alex returns to the couch. I show him how the hard thing at the end of white cord slides into the hole. He unplugs it again within seconds. You would’ve thought they’d taught him about this at his school, where they have an iPad.
“Maybe they have two,” says Ned. We don’t. Sometimes I want to give up and just think that it’s Alex and the way he wants things.
“Plug it in! You know what to do.”
The red stripe turns green. Oh yes oh yes thank you, let me suck the power. Let us all suck the power.
Jeff Stimpson is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family's Life With Autism.