01Jun/17

The Next 20 Lessons My Daughter with Autism Has Taught Me

Last month I published The First 20 Lessons My Daughter with Autism Has Taught Me. 

I’ve learned far more than a mere 20 lessons as I’ve parented my daughter who has autism spectrum disorder, so I expanded the list.

Last month Hannah read every one of the lessons I listed and recognized them all as true, and she was proud to be acknowledged for teaching her mother a thing or two (or twenty). I’m confident that she’ll vouch for the credibility of the next 20 lessons, as well.

While all individuals with autism are different, maybe you’ll recognize a thing or two from the list of the next 20 lessons I’ve learned by examining the world through my daughter’s unique lens.

Lesson #21: The frontal lobe of the brain controls a set of mental skills that help to get things done—Executive Function.

Executive function helps to manage time, pay attention, switch focus, plan and organize, remember details, avoid saying or doing the wrong things, do things based on your experience, and multitask. Hannah struggles with many of these, which hinders her independence. I’ve learned to provide instruction and tools such as a Time Timer (to help her see how much time is left before the next activity), an electronic calendar, and an organizational system to help Hannah and my students in the classroom. A willing peer buddy can also be helpful beyond words.

Lesson #22: Stretching a child on the spectrum to appreciate new experiences takes baby steps. If stretched too far too quickly, they will break.  

I’ve learned that expecting Hannah to accomplish new tasks takes intervention and time. Setting expectations too high makes her feel defeated and discourages self-confidence. I don’t want her to feel as if she’s doing something wrong or isn’t good enough.

Lesson #23: It’s often difficult for children with autism to navigate friendships.

We’ve gone from scripted language to play therapy. Then from play therapy to friendship groups with the school’s guidance counselor. Many of my friends’ kids then became the ones she could count on for acceptance. And now Hannah feels as if she can associate with various cliques of kids at school. She has a lot of friends, though at times I’m not sure she recognizes this. I’ve learned that social skills must be taught and that a parent must intervene to make this happen or it simply won’t. The Asperkid’s (Secret) Book of Social Rules by Jennifer O’Toole is a fantastic resource!

Lesson #24: Routines and schedules play an important role for people with autism by helping create stability and order.    

Everyday hustle and bustle that most people find normal can feel like an overwhelming sensation of crowds, noises, and lights to those on the spectrum. As a child reacts, sometimes dramatically, the parents face incredible stress. Routine schedules provide calmer transitions. People with autism are quick to learn routines and are motivated to repeat them. I’ve learned that combining tasks into routine experiences and defining a schedule greatly decreases stress for the entire family unit.

Lesson #25: A sensory retreat is crucial. It assists in self-regulation by helping a child on the spectrum recover from “fight or flight” and return to a ready state.                                                                                    

Sometimes a five-minute sensory break from environmental triggers is all a child with autism needs to self-regulate. The retreat is a calm, quiet, therapeutic escape with tools to recover from or avoid a sensory meltdown. I’ve learned these safe places are especially useful on vacations and at holidays. My classroom contains a sensory corner complete with bean bags, sensory fidgets, lava lamps, and sensory water beads.

Lesson #26: Diagnosed with autism or not, children shouldn’t always be rescued from challenges. They should be taught how to face challenges with resilience.                                                                                                                      

Although we want to, we will not always be there to help our children problem-solve in difficult situations. I’ve learned that allowing Hannah and my students to struggle with a situation gives them experience working through frustration. Saving our children doesn’t equip them with the perseverance they will need.

Lesson #27: A child with autism may look like they’re ignoring you, but they’re actually waiting for you to enter their world.                         

What particular interests does the child with autism have? Engage them by using those interests, even if you’re not particularly interested in them. I’ve learned that people with autism focus on what they, not necessarily others, find interesting. It sometimes helps to say their name before engaging in conversation. Parents, therapists, and teachers must enter the child’s world and slowly pull them into ours.

Lesson #28: Imitating the movements of others, like waving, is very difficult for children on the spectrum.

Mirror neurons have been found to be particularly weak in individuals with autism. Therefore, it’s difficult for children with autism to imitate movements. Hannah used to always wave with her palm facing her body—in other words, she was waving at herself. Proprioception challenges further complicate mirroring. If a person doesn’t recognize where their body is in space, it’s hard to replicate movements. I’ve found that specific gestures, facial expressions, and tone need to be taught and defined. 

Lesson #29: Swinging, jumping, spinning, and rocking provide vestibular input to the brain and allow children with autism to organize their bodies and regulate their sensory systems.

These are all examples of repetitive motor behaviors. When a child elicits one of these actions, they are activating their vestibular system. These actions may automatically make the child feel good. However, many children with autism seek these sensations due to feeling under-stimulated. I’ve learned to allow these behaviors—even encourage them—as long as no one else is being distracted and the behaviors aren’t prolonged.

Lesson #30: Lining up toys, crayons, or cards provides order, comfort, and a sense of control for children on the spectrum.

When children with autism can have control over something, they need that behavior to remain as constant as a safe place. Many children without autism also line up items. The difference is that those children don’t normally become upset if the order of the items is switched around. I’ve learned that not only do many children with autism line up items, but there is most often an inherent reasoning within the order.

Lesson #31: Water (aquatic therapy) is a medium that provides ideal conditions to enhance language, decrease stimming, and increase eye contact for those with autism.

The benefits of water therapy are numerous. Water reduces body weight by 90 percent, which helps to relax muscles. By engaging in water activities, children are able to gauge their body boundaries much better. The hydrostatic pressure allows children to better tolerate touch immediately following therapy. I’ve learned that many children with autism also communicate and maintain eye contact more during and immediately following sessions. Give aquatic therapy a try!

Lesson #32: Chronological age and developmental age will most likely not be in sync for kids on the autism spectrum. 

Considering that autism is a neurological developmental disorder and one of the major red flags is that children don’t hit their developmental milestones on time, it’s easy to see that a child can be five years old chronologically but have the mentality of a two-year-old. I’ve learned that this anomaly is observable while children play board games (turn-taking), discuss preferred interests (My Little Pony compared to mainstream teen culture), and self-care. So, if working on social pragmatics, you might want the child with autism to develop a friendship with a younger child.

Lesson #33: Children with autism are heavily dependent on cues and prompts in order to move on to the next task—even when they’re able to identify the next task. 

In The Reason I Jump, Naoki Higashida, a thirteen-year-old boy with autism, says, “People with autism are sometimes unable to move on to their next action without a verbal prompt. For example, even after we ask for a glass of juice and are given it, we actually won’t start drinking until someone’s said, ‘Enjoy’ or ‘Go ahead and drink then.'” Higashida admits that it doesn’t make sense because he knows what to do, but says it can be terrifying to do it without the prompt. I’ve learned not to give up on Hannah getting through this terrifying phase because she wants to free herself from the chains that hold her to waiting for the prompt. Her most arduous tasks to accomplish without cue are getting out of the car and eating.

Lesson #34: Children on the spectrum tend to see the parts of an image or idea (gestalt) before the entire image or idea materializes.

People with autism tend to see the details of an object first and then gradually the entire image comes into focus. A vivid color or an interesting shape within an image may capture their attention and concentration. Hannah is especially drawn to shapes contained within a whole. When she was younger, we would pass homes while walking through our neighborhood, and she would call out the names of certain shapes comprising the homes. It took time before I was able to figure out her intention, as she never pointed (another hallmark of autism). I’ve also learned that children with autism may become fixated on certain parts of a conversation and miss the big gestalt intended.

Lesson #35: Those with autism tend to have an innate connection with nature, which provides a peaceful effect. 

Hannah’s demeanor is calmer and more peaceful when she’s able to appreciate the great outdoors with all of its sights and sounds. John Elder Robison, an autist and author of Look Me in the Eye, said, “I probably feel more at home in the woods than anywhere else.” Hannah says that nature is logical and doesn’t involve emotions—her idea of tranquility. Temple Grandin (professor of animal science and an autist) has suggested that people with autism have an innate connection with animals. I’ve learned that nature is another venue in which Hannah and others with autism feel great comfort and peace.

Lesson #36: Society has general rules that others learn from observation. This hidden curriculum must be directly taught to children on the spectrum.

The brains of children with autism are not automatically wired to pick up, understand, and use the social milieu around them. Hannah used to interrupt others in the middle of a conversation and ask questions endlessly in class. I’ve learned that the hidden curriculum must be defined and explained to my daughter. In other words, children with autism will follow specific social norms if the rules are taught and reinforced.

Lesson #37: Acting as someone that you aren’t is the highest form of self-harm and is exhausting. Allow your kids to be themselves!

Naturally, as parents, we can all picture the kids we think our children should befriend. Often they are the exact same type of friends we chose when we were younger. Even if we, too, have autism, our children are not us. Hannah feels more comfortable being around kids whose interests are similar or kids that are younger. I’ve also explained to her that you can have different friends outside of school than you do at school. I’ve learned that trying to selectively choose whom Hannah befriends leaves her feeling as if her interests aren’t important and that she should fit in when she does not. It emotionally exhausts her. We don’t want that for our kids.

Lesson #38: Individuals with autism are perfectly capable of feeling sympathy for others; however, cognitive empathy (inferring mental state) is more of a struggle. 

Children with autism are able to show feelings of compassion (sympathy) to others especially in times of sorrow. They are also more than capable of showing emotional/affective empathy (empathic concern) for others. However, I’ve learned that cognitive empathy is not a collective strong point. It is extremely difficult for children with autism to infer another person’s point of view in a situation. Liane Kupferberg Carter, author of Ketchup is My Favorite Vegetable: A Family Grows Up with Autism, said, “While it’s true that autistic people often have a harder time reading social cues, it is quite a leap—and a dangerous one—to assume that a person’s inability to interpret non-verbal cues means he doesn’t care and has no empathy.”

Lesson #39: Self-advocacy for individuals with autism means they must expect people to treat them with dignity and respect while also requesting what is needed in order to succeed. 

Self-advocacy starts with respecting oneself. If a child with autism, or anyone for that matter, doesn’t respect herself and believes she deserves to be treated unfairly, then others probably won’t go to the trouble of respecting her or treating her fairly. I’ve learned that by identifying Hannah’s strengths and weaknesses, then determining specific tools to be used for accommodations and modifications, she has a stronger voice to ask for what she needs. The hope is that one day she’ll be able to rely less on those aids.

Lesson #40: No doctor can make a definite prognosis as to the limits that individuals with autism can achieve. Hope and early intervention are the best medicine. 

In 2007, at the early age of two, Hannah’s neurologist gave a grim prognosis for her future. But many other professionals believed she could and would gain more skills. Through early intervention, neurological pathways were rewired resulting in positive development. I’ve learned that with as much advancement that has occurred in the last decade with autism, it still remains a mysterious anomaly—we’re still not even sure about its cause. Until we know more, we must try everything we can to bring our kids to their greatest potential.

I hope my revelations continue to raise an awareness of the needs of individuals with autism spectrum disorder. The more we familiarize ourselves with some of the challenges a person with autism faces, the better we can ensure our loved ones get what they need! Be your child’s champion by understanding their actions, which sometimes speak louder than their words.

I welcome any comments that you can share on lessons learned from individuals on the spectrum—just drop them in the comments below.

Take care,

Lori

 

 

 

29Apr/17

The Top 20 Lessons My Daughter with Autism Has Taught Me

As Autism Awareness Month winds down, I reflect on how much more my daughter, Hannah, has taught me than I could ever teach her.

Being on the front lines with Hannah’s autism has made me a better mother, teacher, and person. Only through a decade of experience with Hannah have I surmised that Hannah was hardwired to be who she was going to be all along. And, my passionate, determined, ambitious, and driven little girl is amazing just the way she is!

Embracing that acceptance has felt like a heavy weight lifted off my shoulders. While I realize all individuals with autism are different, here are the first 20 lessons I have learned by examining the world through my daughter’s unique lens.

Lesson #1: Hannah will be the first to tell you that she is different—not less or more.
I never kept Hannah’s diagnosis a secret from her. That would have been difficult with all of her therapies and doctors’ appointments. The knowledge of her diagnosis, complete with its strengths and challenges, has empowered her to own her “uniqueness.” She exudes pride. She has never shamed her autism or used it as an excuse. The lesson I’ve learned is that people living with a diagnosis of autism are who they are, unique and invaluable.

Lesson #2: Although autism plays a very significant role in Hannah’s daily interactions, it does not define her.
Without a doubt, autism has shaped Hannah’s personality and interests—the diagnostic criteria suits her to a T. However, Hannah plays tag at recess with friends, volunteers at our county’s Humane Society, and runs a fast mile in cross country. You won’t find those in the diagnostic criteria. I’ve learned not to make assumptions about what she or any person with autism is able to achieve.

Lesson #3: Not all individuals have the same sensory systems.
Hannah’s sensory systems used to challenge her beyond belief. I remember taking her into a loud, crowded room and hearing her scream, “It hurts! It hurts!” Now she has no problem with loud rooms, though specific, individual tones still set her off. Her tactile defensiveness is challenged with the change of clothing due to the change of seasons from summer to fall. Long sleeves scrape against her skin, and jeans are made of uncomfortable denim. Eating has always been an aversion due to texture and interoception challenges. I’ve learned to be more aware of and compassionate about how others literally feel the world.

Lesson #4Some people think literally and in pictures.
Figurative language including idioms, metaphors, sarcasm, and hyperbole are difficult for her to follow. When she was younger, I bought a children’s book of everyday idioms to help her understand their suggested meanings. Her favorite has always been: Has the cat got your tongue? I’ve learned it’s okay to let go of metaphor in order to respect Hannah and others who benefit from straightforward communication.

Lesson #5: When I tell my daughter something is going to happen, it better happen or I’m going to wish it had.
Hannah has a very rigid schedule, which helps with successful transitions. This is crucial for her self-regulation. If a preferred activity has to be pulled from our schedule, her inflexibility causes great anxiety to all. It’s a life lesson for me to be absolutely certain I can pull off what I say I will, which has forced me to be clear and honest with everyone in my life.

Lesson #6: The ticket into many of our children’s worlds is their affinities.
As a toddler and young child, Hannah’s affinities were trains, space, shapes, numbers, and letters. Her affinity for the last three years has been cats. I used her affinities to gain her attention and then slowly made stretches and connections to other items or topics. I’ve seen how this is true of any person—identify their passions and affinities, and you can engage almost anyone in what you want to present or teach. It even helps make new friends, young or adult, to connect with that person’s greatest loves and enter their worlds.

Lesson #7: What I believe makes an individual happy doesn’t make Hannah happy.
My happy is not her happy. Hannah doesn’t need people to agree with her or to enjoy what she finds interesting. Her facial affect for happy isn’t as expressive as others’ either. Mirror neurons may play a role in this, but it’s helped me view all people with an open mind, knowing that they may not delight in the same things I delight in or laugh at the jokes I find funny. Understanding Hannah’s happiness has helped me love others more intimately.

Lesson #8: What is a challenge today may not be a challenge tomorrow.
Hang in there, Mom! Yes, because of Hannah’s proprioception and vestibular sensory challenges she experienced gravitational insecurity. She had a rough time learning to walk because she had no idea where her body was in space. She couldn’t feel the floor! But she learned how to walk—she even runs cross country! As soon as she was on her feet, I wanted her to begin to talk. Language was very difficult for her to motor plan—some days I wondered if she would ever learn to interact with spoken words. But she began using echolalia and her growth continued from there. Now she shares about her day and we chat about cats. She talks so effectively, we are currently working on filtering comments! I’ve learned to look back and see how far my child has come—and celebrate how much she’s emerged!

Lesson #9: Hannah doesn’t just learn by watching others.
She has to be taught everything she knows. Until I had my son, Connor, I never knew that kids naturally just pick-up how to get dressed, eat, and use the microwave. Hannah even had to be explicitly taught how to peel a banana. I’ve learned to teach even the simplest activities step-by-step, which has taught me to think through everyday actions I’d otherwise taken for granted and appreciate how hard some people have to work just to get out the door in the morning.

Lesson #10: It is imperative that I no longer discuss Hannah’s challenges in front of her.
Hannah has always been raised with therapists in and out of our home. She’s truly a therapy kid, so there has always been open communication between the therapists and myself in front of her. Not long ago, however, she adamantly requested that we not discuss areas needing improvement in front of her, and I respect her wishes. And, I understand. What person of any age would want to hear about challenges, struggles, and shortcomings all the time? Instead, we work hard to build her up by recognizing and building on her strengths.

Lesson #11: I not only need to tell Hannah to stop doing something, but, it’s also important to give her the reason why.
If Hannah is doing something inappropriate, chances are that she doesn’t know that it’s socially unacceptable. And, she has no idea why she should be embarrassed. Providing an explanation for redirection always helps when correcting social skills. Clear communication about the why behind things is helpful for any child and forces me to think about social norms I’ve come to value.

Lesson #12: It’s easier to just do tasks for Hannah; however, this will make her more dependent on me in the future.
Hannah must learn that she is going to have to do things on her own, and I have to remember that tasks don’t have to be done perfectly. I’ve posted lists all over our home to make her more independent. The steps to getting ready in the morning are located on the inside of her bathroom cabinet door, and the list of school items she needs to pack in the car is located in the laundry room by the garage door. These lists help Connor and me, as well, and remind me of the power of a checklist.

Lesson #13 Flapping (stimming) just meant that Hannah wanted to communicate.
I had to learn to listen when there were no words. Hannah wasn’t using the flapping as a ritualized behavior. She wanted and was excited to communicate, but she just couldn’t. Flapping was her communication. The lesson helped me connect with my daughter early on and read her nonverbal cues. I think it’s helped me continue to connect with her and, in a way, with others in life.

Lesson #14: I cannot give Hannah a list of things to complete.
Everything sounds garbled to her after the first item. When I finish the list, she has even forgotten the first item. Then, her anxiety and patience are challenged. Because she is upset with herself, she takes it out on me. Time order words help, but better yet, I’ve stuck Post-Its all over our home to write lists down when needed. This has taught me to avoid overload and keep it simple, a skill I’ve used as a teacher in the classroom and even with myself, so I don’t get overwhelmed by my own long to-do list.

Lesson #15: For every challenge that autism has given to Hannah, it has also given her a gift.
Hannah is baffled by the social interactions needed for team sports; however, she is a concert pianist. She has affinities she can’t avoid yet is a brilliant artist. Hannah has difficulty with anxiety but has an amazing memory. This lesson may be exaggerated with Hannah because her challenges seem so huge, but the principle is true for every person: we all have challenges that almost always come with a gift. I’ve seen it in my classroom…and myself.

Lesson #16: Behavior is a form of communication.
Hannah often becomes upset when her brother is praised for an action and she is not. She feels as if Connor’s successes are her failures. This is obviously not true, but it took some explaining to allow her brain to process and accept. In the classroom, Hannah becomes upset if I use an algorithm instead of a more conceptual model. She must see the mathematical process being used and at one-hundred percent. Hannah has taught me that our moods speak when we can’t find the words—true of everyone, not just someone with autism.

Lesson #17: Social pragmatics need to be taught directly.
Hannah has used scripted language since she was a very young age. It started with the words, “Hi! My name is Hannah! What is your name?” When I determined she couldn’t concentrate on what I was saying while looking me in the eyes, I learned that she could imagine a dot on the bridge of my nose on which to concentrate. This holds her to societal norms without risking positive social interactions.   

Lesson #18: Receptive and expressive language don’t always correlate with aptitude.
While Hannah’s cognitive ability is far above average, her motor processing speed is delayed. She needs to be given time to process others’ words, and time to form her own responses. Wait time is essential. When she was little, I would ask her a question and forget all about it. Five minutes later she would come back with the answer. I’ve learned not to assume that someone is not sharp if they can’t answer instantly, which has been invaluable in the classroom.

Lesson #19: Mind-blindness inhibits Hannah’s ability to see things from a different viewpoint.
She has a difficult time understanding how others think, feel, and respond. And once a difference is explained to her, she doesn’t generalize it to apply to other situations. Hannah assumes that everyone shares her same way of thinking, has the same thoughts about a person, event or situation, and shares her same point of view. And, when they don’t, she emphatically believes they are at fault. Hannah has taught me that some challenges of autism result in a tone and attitude she cannot easily change. Understanding this has helped me be gentler with her and try to explain other viewpoints, which I must do over and over in each new scenario.    

Lesson #20: I did nothing to cause Hannah’s autism.
Hannah has shown me that this was simply how she was created to be. She is a unique blessing—not someone that needs to be fixed. She was made to grace the world with her headstrong tenacity, one of autism’s gifts. Watching Hannah has helped me stop the blame I heaped on myself for small things that happened during my pregnancy, like the fall in the driveway, the occasional soda, or the newly-painted room I walked into one afternoon. Hannah, and all children and adults with autism, are who they are. What a wonderful lesson to be free from feeling like I was at fault!

Only by acting as a detective to uncover the basis of Hannah’s behaviors have I been able to encourage her beneficial actions and discourage adverse ones. These lessons have changed the way I parent her, especially, but also her brother. They’ve helped me teach with greater compassion, and advocate for people with greater clarity and insight.

I will continue to share more in a series running throughout the month of May. I hope my revelations will continue to raise an awareness of the needs of individuals with autism spectrum disorder.

I welcome any comments that you can share on lessons learned from individuals on the spectrum—just drop them in the comments below. You may even see them in a future post!

Take care,

Lori

21Mar/17

Why Special Needs Parents Write

 

 

 

 

 

I started putting ink to page over a decade ago, in 2006, when my daughter Hannah was diagnosed with autism. In a disorderly fashion, these scribbles have been collected on everything from napkins, to my iPhone’s printed notes, to journal after journal.

Like unsorted photos from the past, these memories have piled up over the years. Their containers are located adjacent to yet another set of containers that store doctors’ and therapists’ notes, Individual Education Plans (legal educational documents), and a superfluous amount of pamphlets, flyers, articles, and conference handouts. While the paperwork means nothing to the average person, it’s my collective treasure of proven effective interventions and strategies that have helped Hannah progress along the autism spectrum—evidence.

Although the containers house resources and emotional ramblings, only my scattered memories can weave our journey together. And, I have been driven to understand these memories.

You see, over a decade ago, I had no time to process the painful experiences. For if I had, the grief would have been too overwhelming. Moms can’t break down. So, disassociation was my best alternative.

Most authors write with one of three purposes: to persuade, to inform, or to entertain. I can’t seem to find my desire to disclose our story conveyed by any of those three simple words. My passion for writing, along with most special needs parents, is more profound than one word can even fathom to encompass. Writing gives all of my experiences related to autism since 2006 structure.

We Write Because Writing is Cathartic

Writing is a healing therapy for me. Disability Scoop published a study in 2009 stating that moms with children with autism have stress similar to combat soldiers. By writing about a time that seemed like a tragedy I had no time to process, I am able to explore episodes that have remained dormant for years.

Writing helps to dissolve some of those hard knots of fear, grief, loss, and guilt that have kept me stuck in the past. I’ve had to sit in some dark places trying to shape the past’s meaning. However, once on the page, those undesirable knots subside—the experience has been transformative. I felt no control over Hannah’s autism—it’s a terrible feeling not being able to fix your child’s challenges. Writing is a way to interact with and interpret the past with truth and clarity. It illuminates our experiences as they were.

Writing has taught me not to sidestep any issues or try to eliminate painful experiences. I have found that if I do, the result does not speak truth in order to bring about closure. For me, until I record it, the story seems unfinished and cheated—even if the reader would never know. Once on the page, it’s as if a great weight, a weight of the past, has been lifted. Truth brings peace. Sometimes my words may seem too harsh, my personality hardened, or my convictions too strong; however, the root of my beliefs always lies in what is best for our kids affected by autism.

We Write to Describe Our Experiences to Others

Writing allows me a venue to share my feelings with others. Hannah’s autism diagnosis was a defining moment in my family’s life that changed our course. I have publicly kept quiet beyond my words on a page. No one wants to hear about our challenges day-in and day-out, and I don’t want others’ pity. However, I have a huge inner life that needs a public voice. I write not only to hear that voice, but to share that voice.

I also believe that reflecting on my past in writing will allow others to feel less lonely. Sharing private experiences in a public forum reveals our family’s life on the front lines with autism. Hopefully, others are enlightened that autism is all about community and learn that other families experience similar situations. I love knowing that our story may help other families—it’s as though my writing says, This is who we are, this is what we’ve been through, and I hope your family can learn something from us. I believe that others will benefit from our experience by following our successes and steering clear of our failures.

We Write as Staunch Autism Advocates

After attending the Autism Society of Indiana’s Autism Expo this weekend, I continue to be thrilled by the movement in autism awareness, advocacy, and prominent supports. The number of therapy centers and programs that have been created since Hannah was going through early intervention is nothing short of a miracle. The autism writing community also influences those changes. Words are powerful!

When I sit down to write, I feel as if I’m a representative of the autism community—not just Hannah’s mother. My words are intended to encourage early identification, immediate interventions, and resilience along the journey. I don’t want others to go without support.

We Write to Create a Literary Archive for Our Families

Early intervention and continued support have been transformative for Hannah; however, the mass of paperwork houses painful memories that I don’t want so visible—they carry emotional valence for me. I don’t want to relive it. However, I do want both of my children to value our family’s trajectory. I don’t ever want its essence forgotten, so I find personal satisfaction in examining and documenting our life. I want to get it on record as our story that we can read and re-read.

Pulling our history together in narrative form assures that our path will not be forgotten. Shared memories make our past seem more authentic. It leaves a piece of us behind that Hannah and Connor will crave in their older years—a legacy. There is value in capturing both treasured and challenging memories—a timeless gift.

We Write for a Clearer Version of Who We Are Today

Only by reading about the challenges that my family has overcome can I appreciate where we are today. In other words, as I look at what makes our journey worth reading, I also reveal what makes it worth living. I write to find myself and tap into my gratitude. Hannah has come a long way, and I have found peace after divorce.

I believe I am so much more than the single, working mother who sometimes feels as if the daily grind of fixing meals, packing backpacks, teaching school, shuttling my children, helping with homework, and tucking my children into bed is all I am meant to do. I never want to lose myself as I had before.

So, why do special needs parents write? We write to preserve the past, share our present, and hope for the future. Through writing, I’ve realized that I’m not alone, and neither are you! Only by looking at my family’s past have I been empowered to move on with the rest of our life and see the role I can take in the lives of others.

I welcome any comments that you can share on how writing has helped you along your journey with autism—just drop them in the comments below.

Take care,

Lori

06Feb/17

Happy 12th Birthday, Sunshine on the Spectrum!

“Today you are you, that is truer than true. There is no one alive who is youer than you.” —Dr. Seuss, Happy Birthday to You!

My dearest Hannah,

Happy 12th birthday, sweetheart! I don’t know why twelve has hit me so hard, but it sure has thrown me for a loop. After rousting you out of bed this morning, you declared that this party would be your best yet! When I questioned you why, you responded, “This year I have lots of friends. So, it feels different. You normally invite some kids from my class and your friends’ kids. But, this year, it was my list.” And, Hannah, you are right.

I couldn’t be happier for you. Friendships have never been easy for you to navigate due to your autism, so today you have reminded me that we need to recognize and celebrate your progress at twelve years of age.

Looking back, I remember you didn’t talk until you were three-and-a-half. Then you used lots of gibberish and echolalia. In kindergarten, scripted conversation allowed you to engage more with your peers. I think about how many social, play, and friendship groups provided opportunities to interact with others with supports. And, I’m certain you don’t want to add up the years of speech therapy. I know I don’t.

You have found a cohort of peers that accept you, understand you, and guide you. Some are more patient with you than I am!

As your math and science teacher, I am blessed to be privy to these interactions on a daily basis. Let me tell you what I see, Hannah. Kids don’t mind if you sit by them in class or in the cafeteria. Your friends often give you prompts in class, like, clear off your desk, get out your laptop, or write down your assignment. If you are having a difficult time understanding a math problem presented on the board, another student in your group will explain it to you in a different way. Your classmates also entertain your affinity for cats. At recess, you pop around from group to group trying to fit in with more than one set of friends. This fortitude is admirable.

It has taken me many years to get your birthdays right! For your fourth birthday, we walked into Chuck E Cheese’s ready to celebrate. Only minutes after walking through the doors and getting our hands stamped, you started screaming and covering your ears. Everyone who had come for the party remembered your words: “It hurts! It hurts!” So, we packed everything up again, drove home, and celebrated in the comfort of our own home, where it didn’t hurt.

We went to Incredible Pizza to celebrate your eighth birthday. You were so excited to race your friends with the go-karts, but you were inconsolable when a friend passed you on the raceway to take the checkered flag. Then, when all of your friends won a prize in the giant claw machine, and you didn’t, I thought a meltdown was inevitable. However, an employee noticed your distress and was kind enough to open the machine and give you a prize. Crisis averted.

After beginning this letter, I discovered why your birthday has been so hard on me this year. Time is running out before you are an adult. I have high hopes you will be attending college and living independently in the fall of 2023. That’s only six years from now. So much of the outside world baffles you—how can I expect you to learn all you need to know in this short span of time? How can I ensure you gain the life skills needed to navigate it? I wish I could make life stand perfectly still. But, time stands still for no one—not even those with autism.

About a month ago, you asked if you always need to make sure that people you come into contact with need to know that you have autism. “It’s up to you,” I said. You can tell them as little or as much as you deem comfortable. However, you must always advocate for what you believe you need to be successful. I said it’s also your decision whether or not you spread awareness and advocate for others. At the end of the conversation, you proudly declared that you would always be transparent when it comes to your autism.

Every year, I see you understand your autism more and more. Just remember, autism doesn’t define you, nor is it a layer that needs to be shed. Autism makes you uniquely you!

So, at the end of the day on your twelfth birthday, I’m confirming that this was the best birthday party yet. You looked beautiful, my dear. Not because of the new clothes you were styling or the perfect French braid that drew attention your thin, delicate face—neither of which you wanted to wear, but I made you. You were beautiful because you smiled all evening. There was not one meltdown. There was not one moment when I saw you alone picking at your nails, playing on your iPad, or reading a book. You skated on the rink, ate a bite of pizza and cake, enjoyed the DJ booth with your friends, and opened presents that were uniquely you—an animal cell model, Warriors’ series books, Barnes and Noble gift cards, puzzles, art and craft supplies, cat-related items, Reese’s cups, Swedish fish, and more. Your friends know you.

And as I packed away the presents and placed the remainder of the artist’s palette cake, complete with brush and splotches, into the box to leave the skating rink, I heard the DJ play “You Are My Sunshine.” You were still skating with your friends and spent the night with your dad.

I haven’t had the chance to tell you how much the requested song meant to me. I’ve sung that song to you every night as I’ve tucked you into bed since you were a newborn.

You’ll never know, dear, how much I love you.

Happy 12th birthday, Sunshine on the Spectrum!

Love,

Mom

17Jan/17

The Balancing Act of a Special Needs & Single Mom

I knew life was intense when on Thursday, the furnace repairman—who had to be summoned for the second time this season—looked at me and asked, “Are you okay?”

Even a stranger could sense that, no, nothing was okay. To be home for the “window of time” given by the heating company, I had to take an entire day off teaching—not an easy task. And the previous furnace repair had been costly. Why is it one unexpected event such as a vehicle failing to start or a furnace refusing to ignite makes us feel our world is crumbling down? In times like these, I pull out Iyanla Vanzant’s poem, Yesterday I Cried.

Without even a sliver of extra time in our busy schedules, modern American parents struggle to respond to unexpected chaos. I believe my situation as a single mom with a special needs child complicates matters even more. And I know I’m not alone.

Raising two children (one with special needs) while balancing my full-time career as a teacher often leads to frustration at not having more time to devote to both—let alone juggle an unexpected crisis. I lack the support of a spouse, so it’s up to me to manage schedules, provide transportation, organize backpacks, and prepare and clean up after meals.

During the week there are sessions with the autism behavior specialist, piano and violin practice and lessons, art class, Tae Kwon Do class, homework, cooking, laundry, and bills that need to be paid. During school hours, as a teacher, I must be dynamic and creative in presenting material for Math and Science a variety of ways for 60 students. It’s important that I differentiate for individuals and be there for every single one of them. Teaching is not a career in which you can leave your work at the office. There is a lot of planning and paperwork done outside of the school day. I enjoy both roles—parenting and teaching—but each is all-consuming. At times, I feel as I am not enough.

The Five Traits of a Supermom

Feeling desperate last week, I remembered a message given by our pastor that resonated with me—The Five Traits of a Supermom. I am a conscientious note-taker, so I was positive I had penned some of his poignant words and saved them. I knew I needed an attitude adjustment and thought the notes might be of benefit.

1. Prioritize Valuable Time

Prioritize means “to put in order of importance.” The first suggestion was to list my key priorities, then to record all my normal activities in a day. Next, I categorized each activity as to how it fit in with my priorities. Looking at the categories, I decided what activities needed to be decreased or stopped or how I could get some help accomplishing them. I resolved not to feel guilty for saying “no.” I also decided I wasn’t going to feel as though I wasn’t doing my part just because others were doing more. Spreading myself too thin was turning me into a grouchy robot going through the motions instead of a content, joy-filled woman appreciating the life in front of me. I’ve also decided not to be vested in how others believe I should be spending my time. It’s not their life. (More information on the prioritizing process can be found on The Confident Mom website.)

2. Place Family First

There is nothing more valuable on Earth than my children. They are the most important thing in my life. Their childhood and stability will not be compromised. Making sure they are fulfilled individuals and reach their highest potential is of the utmost importance. Their health, education, and well-being is my number one job. There also needs to be time for play—movie nights, numerous board and card games, reading chapter books together (hyper-literary mom), and visits to the park. I will always prioritize time serving my kids and time with my kids.

3. Utilize Helpful Supports

I am surrounded by good, caring family and friends that wouldn’t mind helping if they knew I was in need. In fact, many have already offered and helped. I need to turn to them more often instead of struggling alone and overwhelmed. No one earns a trophy for doing everything on their own—only exhaustion. People feel good when they give or help one another. It fills their cup. I have to stop seeing this as a sign of weakness and reach out.

4. Forgive Themselves

We are our own worst critics, aren’t we? As a teacher and mother, I scrutinize myself: How I could have done something better? What is another parent doing for their child that I’m not able to do for mine? We do what we believe is best with the time we are given and the money we have. We are human. On the day I stayed home with the broken furnace, my son missed his bus because he couldn’t find his shoes. He puts himself on the bus every day and had never missed it before. He knew he didn’t need to set his alarm because I was home. After I dropped him off at school, he texted that he had forgotten his library book. How could I also have forgotten this? It was Thursday (library day), and we had spent the last week reading The Strange Case of Origami Yoda. I went home, retrieved the book, and dropped it off in his school’s office. Bottom line, my son got to school and had his book. I forgave myself.

5. Don’t Believe They are Super

I gave up seeking the Mother-of-the-Year award a long time ago. Living up to a super standard is setting yourself up for failure and leaves us exhausted, depleted, and defeated. Moms need to be dependable. Dependable is super in itself. Our children also need to see us with strong passions and interests of our own, so if I have time and space to pursue something, that’s great. And I try to model humility, kindness, and support. But I have to be careful not to keep piling on expectations requiring superpowers I don’t have. If dependable is all I can manage on a day when the furnace shuts down in the middle of winter, I’ll settle for that.

I have always appreciated Eleanor Roosevelt’s quote, “You must do the things you think you cannot do.” I never, ever believed I would be a single mom. Others have actually told me that divorce isn’t an option for them. Really? Well, it wasn’t for me, either, but I found I wasn’t given a choice. Having a child with special needs wasn’t in my family plan, either, but I wasn’t given a choice in that, either. However, I am so blessed that she was given to me. I wouldn’t know what to do if she was anything different than who she is, and being her mom—even having to parent her and her brother as a single mom—has been part of my story, part of how I’ve become the woman I am today.

Life as a single parent and special needs mom is a balancing act. When I stood next to the furnace and the repairman asked if I was okay, I felt completely out-of-balance and weak. Am I really enough for my kids, for my friends, for myself? After I reviewed my pastor’s notes, though, I realized I am enough. I am more than enough. I realized I am, in fact, a supermom. I’ll bet you are, too.

I welcome any questions and/or comments—just drop them in the comments below.

Take care,

Lori

 

 

 

02Jan/17

Girls on the Spectrum: Reflections on Being Overlooked

Photography by Ardea Photo

Most fit in better with boys, as boys’ play is more functional and communication less confusing. Their affinities and interests are usually with animals, a specific book series, and collectibles (My Little Pony, Littlest Pet Shop, Ever After High, and more)—in fact, these often pose as their best friends. And, they are hard-wired to defend their position on topics with staunch conviction. They are our girls on the autism spectrum—amazing in all of the ways they are not typical. But overlooked at a high price that is nothing less than disheartening.

Why Are Our Girls Overlooked?

While current estimates show that autism appears in about 1 of 68 children in the U.S., only 1 in 4 of those children diagnosed are girls. Few argue these stats, but researcher Janet Lintala says that if diagnostic criteria were established that could quantify female autistic behaviors separate from male autistic behaviors, the ratio may more accurately reflect 1 girl to every 2 boys.

Currently, some girls who have autism are being misdiagnosed with attention-deficit/hyperactivity disorder, obsessive-compulsive disorder, eating disorders, and anxiety disorders. And those girls actually getting an autism diagnosis are getting that diagnosis significantly later than for boys, limiting opportunities to receive early intervention in the form of treatment and therapies.

Because girls were often left out of earlier autism studies, diagnostic behaviors are heavily skewed to indicators that present more typically in males. While my daughter, Hannah, happened to mirror behaviors typical in males with autism, doctors still did not go down that path because of her gender. We began to realize the need to explore a diagnosis because her developmental milestones were delayed.

As reported in Scientific American, a 2012 study by cognitive neuroscientist Francesca Happé found that if boys and girls have similar levels of autistic traits, the girls needed to have either more behavioral problems or significant intellectual disability—or both—to be diagnosed. Consequently, this finding suggests that professionals are missing many girls who are on the less disabling end of the autism spectrum. Previously, this category was labeled Asperger’s syndrome.

Girls with autism silently develop their own coping mechanisms to mask their challenges. They listen to others’ language in social situations and then copy it in other conversations. Unfortunately, this backfires when the context of the new situation doesn’t warrant the language previously utilized. Obviously, lack of receptive and expressive language serves as the culprit.

Girls on the spectrum also continually apologize for their social faux pas in order to avoid attention. In group situations, these girls naturally gravitate toward others that may also be socially different. This, in return, makes them feel more normal.

What Are Some Behaviors of Girls on the Spectrum?

Girls do share three of the paramount characteristics of autism that appear in boys: difficulty with social pragmatics, trouble with verbal and nonverbal communication, and limited interests in activities and play. Hannah didn’t start speaking until around the age of three-and-a-half. She had to be taught the subtleties of engaging in conversation, such as, “Hi! My name is Hannah. What is your name?” Facial expressions were something she had to memorize—not something picked up by watching others. She also perseverated on numbers, colors, and shapes.

Bestselling author Jennifer O’Toole, a female with autism, says the word best used to describe girls on the spectrum comes down to “too.”

“Too much, too intense, too sensitive, too this, too that,” O’Toole says. “There is really not a time when we’re not feeling some level of anxiety, generally stemming from either sensory or social issues.” Hannah’s intensity to play every note on the piano or violin correctly is too much. Her sensitivity to the texture of food is too heightened. And, her tenacity to prove her point-of-view correct remains steadfast—some might say too intense.

What Price Could be Paid if Autism is Overlooked?

Masking autism while not feeling comfortable in their own skin is simply exhausting for our girls. Unless they are empowered to understand the beauty in their differences, low self-esteem and a feeling of worthlessness are inevitable.

Of course, adolescence is difficult for most kids, but it’s especially challenging for girls with autism. Many can cope with the far simpler world of elementary school friendships, but they hit a wall with the mean girls of middle school—their naivete leaves them helpless. They may even be years behind their peers when it comes to maturity.

Emotional immaturity results in apathy toward personal hygiene. Many highly intelligent girls on the spectrum have difficulties washing their hair, wearing deodorant, and dressing appropriately. Some of the challenge lies in motor planning, proprioception issues, low muscle tone, and mind-blindness. Some won’t bother trying; others try, but struggle. And when they neglect personal hygiene at critical stages, friendships suffer.

What Can Parents Do to Aid Their Girls on the Spectrum?

Parents are best positioned to help their girls on the spectrum. First of all, be aware of the overarching indicators for autism. Don’t be afraid to ask trusted medical professionals or your school corporation’s autism consultant about performing an evaluation.

Whatever the result of the evaluation, get your daughter the help she needs. Social play groups were extremely helpful for Hannah. Scripted conversation along with social stories helped transform her language and enabled her to understand the unwritten rules of the world around her.

Jennifer O’Toole’s book, Sisterhood of the Spectrum, gave Hannah concrete pitfalls (social gaffes) to avoid while embracing the awesomeness of her true self. Jennifer O’Toole assures girls, “We often mistake our most immeasurable gifts for shameful flaws. You are lovable. Right now. Without changing a thing.” True acceptance of our children with autism means not trying to change who they are, and that helps the girls themselves begin to accept—even embrace—who they are. Even though autism is not something that can be shed or cured, we must work to help our children become as independent and positive as possible.

Our girls also need to learn the skill of self-advocacy. Self-advocacy is teaching our girls to expect other people to treat them with dignity and respect—they learn to ask for what they believe they need to succeed and accept nothing less.

This generation of children with autism clearly has significant advantages over those of the past. But much more research will need to be done to design better and more gender-appropriate diagnostic tools.

Perhaps in the meantime, the experiences of girls with autism should teach us to be more tolerant of socially inappropriate behavior in girls.

I welcome any questions and/or comments—just drop them in the comments below.

Now go empower a girl you’ve always believed to be a little bit different!

Take care,

Lori

 

29Nov/16

A Decade After Diagnosis

As days, months, years, and now a decade have passed, I am moving forward with our family’s life in order to embrace life’s open-ended number of possibilities. To be perfectly honest, I feel as if autism stole so much from our family’s life that I don’t even wish to begin to quantify the losses with words—isn’t that what moving forward is all about? Time did not stand still for autism since late in 2006, so why should I?

The Power of Acceptance

When my daughter, Hannah, was first diagnosed with autism, someone shared the five stages of grief with me. Needless to say, I wouldn’t recommend doing this to anyone with a recently diagnosed child. It felt like a shot through the heart. But now, a decade later, I understand its application. And I can finally say that I’ve made it to the acceptance stage.

This is not to be understood as a loss of hope, however. Hope for Hannah’s possibilities is what pushed me to find all the resources necessary to help Hannah overcome as many limitations as possible. We refused to resign ourselves to settling for less than she is capable of becoming. And yet, even as we fought for her best possible outcome, we had to also recognize that she does indeed live with a diagnosis of autism. She will always struggle with some of its traits, as it is part of who she is. Accepting this was necessary.

Acceptance brought a peace and calmness about the very core of who my daughter was meant to be. Trying to fix or cure Hannah’s autism is over. That drive—an impossible pursuit—threatened to steal our happiness. Though many children emerge into more interactive levels of function, as Hannah did, there is no complete recovery for a child with autism. Accepting this is bittersweet. For years I saw progress and secretly longed to see her completely emerge from autism and to be completely free of its challenges. This was of course not possible, and acceptance shifted something inside me, something beautiful and empowering for both Hannah and me. I providentially accept all of my daughter’s strengths, as well as, her challenges.

Defining and Embracing a Meaningful Life

Author Paul Collins said, “Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It’s that you’re destroying the peg.” Constantly correcting Hannah’s behaviors and focusing too often on her autism made her feel more different than the autism itself did. Autist Jennifer Cook O’Toole in Sisterhood of the Spectrum said it well: “Girls on the spectrum often mistake our most immeasurable gifts for shameful flaws.”

I was privileged in July to meet Ron Suskind, author of Life Animated, at the Autism Society of America’s National Conference. His brilliant book and film detail decades of time with their son, Owen, who has autism. Ron spoke of acceptance with a poignant statement, “Who defines what a meaningful life is anyway?” Isn’t that true? Our job as parents is to give our children the tools to grow and thrive while discovering their true selves.

Writing the Story to Preserve the Past

With those truths confirming what I’ve finally come to realize about our journey, I look at the two bulging plastic containers in the corner of our office which hold evidence of the last decade’s tumultuous time. The containers bear doctors’ and therapists’ notes, research articles, Individual Education Plans, brushing and eating protocols, PECS cards, my journals with silent scribbles, orthotics, therapy toys, emotion jigsaw puzzles, bills, conference and workshop agendas, sensory and behavior profiles, and more. If I’m moving on, what should be done with them?

A dear friend suggested I read Mary Karr’s The Art of Memoir. Karr says, “Only by looking back on the past, can we allow it to become the past.” In order to toss the boxes’ artifacts, I needed a literary archive for my children. And, I needed to heal.

Writing is cathartic in so many ways. In essence, I gave words to a time in our lives that allowed us no pauses to acknowledge the nuances of the situation we were experiencing. Mary Karr continues, “Writing wrenches at your sides as you do battle with yourself. People who were once in your life are back. Sometimes it’s as if you are knocking yourself out with your own fist.” Karr obviously could not have described the experience any better. Reviewing the past and revisiting doctors’ offices and hard words said to me at vulnerable moments—remembering painful moments of grief and loss and confusion—it all felt like a fist fight and multiple blows to the gut.

But writing our story was worth the pain. Through words, I’ve preserved the past and reflected on all that we’ve learned without needing to keep the tubs and tools that got us where we are today.

A Parent’s Questions and Doubts

When parents are in the trenches with autism there are many behaviors and thoughts that go through our minds that are very hard to shed. As I look back, those actions were all part of the natural process or journey that special needs parents most often deal with.

What or Who Causes Autism?

During the first year after Hannah’s diagnosis, I believed that I was responsible for causing Hannah’s autism. And, if it wasn’t me, I sure was bound and determined to find out what did. I soon found out that if I was doing everything I could for my family, there was no time to become the “expert” on autism’s catalyst. Over time and much grace, I also have come to the much-needed epiphany that I was not in control of Hannah’s autism. There was nothing in my power that I could have done that would have kept her from acquiring the challenges that come with autism.

Does Autism Define a Family?

I also used to believe that I needed to tell everyone that I came into contact with that I had a child with autism. I wasn’t looking for pity; however, I did once feel as if Hannah’s autism was a tragedy for our family. Autism no longer has that connotation for me, and it no longer defines us. At times we still make adjustments to our travel plans or holiday gatherings to accommodate some of Hannah’s challenges, but does it define us? No.

Does Your Child Need to be Engaged 24/7?

Intervention strategies totally took over our lives in the early years. The maelstrom of movement from our front door was enough to make any family crazed. Our schedule was set weekly with no room for flexibility. I felt that if I wasn’t engaged with Hannah every minute of time that I had with her, then I wasn’t doing my job. The guilt of a special needs parent is enormous. I wish I would have listened to a fellow special needs mother when she suggested, “Let the therapists do the therapy, and you be the mom.” I just couldn’t. I felt if I wasn’t always engaged in extending Hannah’s therapy routine, then she would lose skills she had gained. Thankfully, with acceptance, I no longer feel like that.

Can a Marriage Survive the Diagnosis?

Autism is also very hard on marriages. Eighty percent of marriages in which the couple has a child with autism end in divorce. I believe we were both grieving but in different ways. I do know that my husband had a demanding job, and he needed to be there; however, I felt contempt watching him walk out the door and focus on his career while I dealt with most of the therapy and doctors’ appointments along with another child and my own full-time job. Our marriage did not survive, and I would never want Hannah to believe that she or her autism caused the divorce—as they did not. But this is only the story of my marriage; in the years since our divorce, I’ve interacted with at least a hundred other parents who have a child diagnosed with autism, and many of their marriages have survived and grown strong. I’ve been encouraged to see that even though my marriage didn’t make it, many marriages can and do survive the diagnosis.

What Would You Do Differently?

When all is said and done, I would not have done a thing differently. I believe we do the best we can with the situation at the time, and it helps no one to think, what if? Randy Pausch, in The Last Lecture, said, “We cannot change the cards we are dealt, just how we play the hand.” I am proud of how I played our family’s hand.

I welcome any comments that you can share on how time passing brings about acceptance—just drop them in the comments below.

Take care,

Lori

18Oct/16

Making Friends for Children with Autism

Two weeks ago my daughter, Hannah, was handed something she doesn’t see very often—a slumber party invitation from a friend. I was very fortunate to be privy to the exchange of the invitation, and I believe I was filled with as much excitement as Hannah. Unfortunately, I can probably count the number of birthday invitations she has received on one hand—which is in stark contrast to the number her brother, Connor, receives.

Two of the three defining characteristics of autism spectrum disorder (ASD) include social-interaction difficulties and communication challenges, and these have indeed impacted Hannah’s ability to make friends. Making new friends can be challenging for any child, but even more so for children with autism. They feel anxious approaching people, introducing themselves, and keeping up the conversation. Children with autism are also challenged with reading social cues, figurative language, body language, and receptive and expressive language deficits. Girls, especially, have a hard time keeping up with the fast pace of interchanges in female relationships.

We can’t make friends for our children with autism, but we can give them the chance to meet peers and work on social skills. Children with autism often need to be taught skills explicitly, and as early as possible. Your child must be taught how to navigate friendships.

Practical Interventions To Help Build Friendships

In order to acquire the friendships she so desperately craves, Hannah and I have had to implement several practical interventions which should ultimately lead to her success. We appreciate what Kerry Magro from Autism Speaks wrote, “Autism can’t define me. I define autism.” This confidence is what I’m building into Hannah, practicing it in small everyday ways.

 

Invite Friends to Therapy

For starters, when Hannah was in her earliest of intervention at age two with our state program, First Steps, I would invite my friends’ children to participate in Hannah’s developmental therapy. Along with developmental therapy, Hannah was also receiving speech therapy to aid with communication, as she was nonverbal at that time. When Hannah aged-out of First Steps, I enrolled her into a social/play therapy offered by an organization in our community. They worked on joint attention tasks versus parallel play. This intervention also improved Hannah’s eye contact with others.

Scripted Conversation

When Hannah found her voice, around the age of four, we would visit the park. I would ask other parents if I could help Hannah initiate a conversation (scripted) with their children. We started with as small as, “Hi,” then we progressed to, “Hi! My name is Hannah,” and then finally came, “Hi! My name is Hannah. Do you want to play?” Because of her lack of receptive and expressive language, there really wasn’t much conversation after that. But, it was a beginning. You won’t believe how helpful scripting a conversation can be for your child.

Look for Social Settings Where Your Child Can Shine

At this age, Hannah was also enrolled in three preschools (developmental, play, and academic) while also attending a daycare. Hannah learned to read at a very young age. So, the teachers would allow her to sit in their BIG chair while the other children gathered at Hannah’s feet. She would read trade books to them. I am sure the immersion with other kids had a big influence. Getting your child out into social settings is crucial for practicing social skills.

Sign Your Child Up for One Less Restrictive Environment

Hannah was mainstreamed in kindergarten. I was very happy about this because she would have other students that would be able to engage her in conversation. The importance of having your child in their least restrictive environment cannot be overlooked. Hannah has never been one to learn by watching others; however, there was apt to be more attempts with others with communication in this setting.

Teach What a Friend Is (and Isn’t)

In Hannah’s early elementary years, it was time for her to know literally what a friend was and was not. I had to be specific with behaviors so she would choose wisely. I also found it important that her classmates know about her autism so they could understand her behaviors. That was my personal preference. When Hannah grows older, she may decide differently. Since Hannah always enjoyed books, social stories about friendship were also helpful.

Host Parties at Home and Invite Friends

I have also tried to make our home a fun and comfortable place to visit. This has always meant planning out Hannah’s parties complete with activities. Hannah has a hard time with coming up with things to do and talk about on her own. We buy craft kits, bake and decorate cupcakes, play with silly string, and watch movies. If she is only having one guest over, we discuss a list of topics they could talk about prior to their visit. With Hannah’s exceptional memory, this helps tremendously and eases her anxiety. I also make sure the play dates don’t last too long.

Sign Up Your Child for Classes and Clubs

It also helps to identify other kids that have the same hobbies as your child. Hannah loves art, piano, and running. She is enrolled in art lessons with friends, plays piano duets with friends at contest, and has joined a running club with one of her best of friends. At church, she is in a choir group with kids her age. At school, she has found others that enjoy the same novel series (Warriors), mythology, cats and anime.

Practice Conversation Skills with a Behavioral Specialist

Hannah has also had to work on her ability to think about what others have said and/or are interested in and motor plan her response in order for the conversation to continue (social reciprocity). Conversations used to only be one-way because of her challenge with language. This is a skill that she continues to develop. She would only focus on her preferred topic (perseverations). She also has a way of interrupting others when they are talking. She has taken part in many friendship groups ran by the counselor at her school. When she has specific problems with social interactions at school she generally relies on her behavioral specialist or teacher of record. It helps at this age to have others she can talk to in private besides just her mom.

Consider a Cell Phone – Texting Gives Time to Compose Thoughts

Most recently, at the age of eleven, I have bought her a cell phone. It was her idea to write her number on post-its and to give them to some of her closest friends at school. Little did I realize, but texting allows Hannah time to gather her thoughts and talk to others stress-free. I believe the phone is allowing her to branch-out and talk to some girls that she may have not had the opportunity to otherwise.

In the end, Hannah enjoyed the sleepover and believes she has made four new friends. Time will tell. It is obvious that they made an impact on her. She came home interested in learning to braid her own hair, wanted to watch a popular movie that everyone else had seen, and has a new-found interest in her American Girl doll.

I welcome any suggestions on building friendships for children with Autism—just drop them in the comments below.

Take care,

Lori

 

 

 

29Sep/16

The Power of a Student Modeling Awareness & Acceptance

On the first of September, my teaching partner and friend, Lori, and I were rolling out our version of Genius Hour to our team of approximately 60 sixth graders. Genius Hour is a movement that allows students to explore their own passions and encourages creativity in the classroom. It provides students a choice in what they learn during a set period of time during school. The project reminds me of Kevin Spacey’s movie Pay It Forward.

All 60 sixth graders were seated in my science lab. Some were in chairs at the lab tables while others were seated around the perimeter of the room sitting on the lab stations’ counter tops. My daughter, Hannah, was one of those students—as she has progressed on the autism spectrum over the years, she’s been mainstreamed into regular classrooms, having been re-diagnosed with Asperger’s Syndrome before it was removed from DSM-5.

Lori and I were told that this specific group of students had really embraced last year’s projects and had some exceptional results. Apparently one’s passion for books led him to collecting over 5,000 books for Hendricks Regional Health’s Pediatric Unit. Another’s passion for horses led her to extensive training and a volunteer position with equine therapy. Lori and I had not asked specifics from last year’s teachers, so we questioned the students. Their enthusiasm to share and their energetic responses about their projects astounded us. Hands were flying up in the air, and students were adding to one another’s accomplishments with their own projects.

Then, it happened. The last student we called on is one of the most vocal of our gifted/high ability team of students. He is tall and thin, has an athletic build, and wears glasses. He is the kid in the class that when he talks, everyone listens. They may not agree, but they listen. I had pulled him out into the hallway the week before to compliment him, because he has an incredible way of saying things in the classroom that need to be said—things that I, as a teacher, probably shouldn’t be saying. I appreciate his filtered comments and let him know his voice makes a difference.

During his few moments during Genius Hour, he began by saying that his project included a study on obsessive-compulsive disorder (OCD). His research into OCD led him to a list of neurological disorders that could be associated with OCD (comorbidities). On that list he found autism.

With impeccable elocution, he began, “I moved here in fourth grade. Being in the high-ability cohort, everyone else had interacted with Hannah for years. I had not. It is no secret that the two of us did not get along at all. The other kids shared with me that she had autism, but what is that? And, does she really have it, is it just gossip, or maybe even an excuse to act the way she does? I went home and complained to my parents about our arguments, and I’m sure she did the same.”

He continued, “You see, Hannah sees everything one way—it’s black or white. There is no gray, or anything in-between. She is strong in her convictions and will defend them with earnest intensity. It’s hard for her to understand that others can have a different point of view or opinion, and that it’s okay to disagree. Her headstrong personality only sees one way to get things done—her way. She is brutally honest to others, and it often seems as if there no regard to their feelings. Other kids would let this go, but I simply could not. ”

Then came awareness, which he articulated with understanding beyond his years. “I then read the symptoms in the book associated with autism. Hannah had so many of the listed symptoms. Hannah has challenges that I can’t even comprehend. I then became bothered and troubled. I felt sorry for her. I guess the words neurological and disorder hit me hard. Hannah has this malady and can’t help it. It’s how her brain is wired.”

We were hanging on his every word as I recognized he had moved into a powerful phase: acceptance. “Hannah and I don’t argue anymore, and I have her back—like everyone else. I accept that she thinks and feels differently, but I also know it’s important for her to fit in. I have learned how to talk to her, and I am learning that what I once thought as opinionated and bossy was her version of determined and driven. I would go so far as to call her my friend. That’s what came out of my Genius Hour.”

He finished, and I sat there, stunned. What could I possibly say that could even attempt to rise to that magnitude? And yet he had in that single moment epitomized my core belief—my mantra.

As both Hannah’s teacher and parent, I have to be careful not to focus on Hannah in the classroom, but I did look at her. I didn’t have to worry about what to say. Hannah spoke up.

She said the student’s name and then, “No one has said anything that sweet before about my autism. What you just said really meant a lot to me.”

At that point, my teaching partner, Lori, took the boy by the hand to share and celebrate his epiphany with our administrators. I called his mother the following day to extend my appreciation.

Rolling out Genius Hour was a success, just like their projects had been the prior year. I hope that this year’s projects lead to such fulfillment. With guidance, young kids can truly accomplish and learn great things—they can build, invent, and in the case of this young man, grasp some of the most powerful lessons of life: awareness and acceptance of others who are different. He—and I hope all of the kids in the room that day who listened intently to his short speech—can carry that into adulthood, into a world that needs people with insight and compassion toward others.

I welcome any questions and/or comments—just drop them in the comments below.

Now, do what you can to spread autism awareness and acceptance!

Lori

 

 

 

 

05Sep/16

Teaching 101: Meeting the Needs of Students on the Spectrum

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I can honestly say that I became a better teacher after having children of my own.

Don’t take that to mean that a teacher has to have children to be great. I’m just saying that I became a better teacher after having my own children—and an even better teacher after having a child with autism.

My daughter’s autism has allowed me to truly understand that not all children process the classroom environment and subject area content in the same way. Understanding the needs and challenges for students on the spectrum is key.

I have found there are 8 fundamental key components to classroom instruction that benefit our children with autism spectrum disorder. Having these components in place is essential to maximizing success and decreasing lost time in the classroom.

Know your student’s Individualized Education Plan.

Before the year begins, make sure you have an up-to-date IEP for any student in your class with a diagnosis. It is the Teacher of Record’s job to make sure all teachers that instruct a student with an IEP receive a copy. As a teacher, it is the law to make sure the IEP is carried out in the classroom. It’s a good idea to make a card for each child listing accommodations, modifications, and goals. Place the card in a private, secure area where you will have a visual reminder of the student’s needs.

Provide a repetitive and routine schedule.

Students with ASD benefit from a structured schedule in which the curriculum is delivered in the same time order and with familiar activities to which they have grown accustomed. Deviating from a routine can result in a change in behavior, mood, or academic performance. Provide a written or picture schedule for the child and place in a convenient location for access. Always prepare the child for any schedule changes in advance. The more you can eliminate the element of surprise from your classroom, the more you reduce anxiety for your students with autism.

Limit the amount of language used.

Weak language skills is one of the hallmarks of autism. Receptive language and its motor processing is much slower for children on the spectrum. Rattling off a sequence of instructions or describing a complicated math algorithm on the board at a typical speed loses the child with ASD. One- and two-step directions are best. Time order words are helpful: first, next, then, last. Students with autism also interpret messages literally, so avoid figurative language, as it can cause these students to misunderstand verbal messages. It is also helpful to use a calm and even tone of voice. Give clear and concise directions, provide notes for your students, and pair them with a buddy.

Behavior is communication.

All behavior occurs for a reason—an antecedent or trigger. Behavior describes how factors in the environment affect an individual. To make learning purposeful, the source of inappropriate and distracting behavior must be identified and resolved. If a student is having problems regulating emotions or behavior, provide time away from the group or class in a safe, private area for the child to control himself. Frequent sensory breaks are beneficial. And try not to take behaviors personally.

Social pragmatics need to be practiced.

Social communication is a struggle for students with autism. Children with autism have not acquired social skills by watching others. We refer to this as the hidden curriculum. As a result, students with autism must be provided with numerous opportunities to interact with others. Start as small as preparing a social script for the child. Have the child practice with a respected, mature peer. Coach the child to say, “Good morning,” or interact with others at recess and lunch. It may look like students on the spectrum don’t want to play with other kids, but it may also be that they do not know how to start a conversation. As they grow older, these students can also be taught to advocate for their own needs.

Focus on strengths and interests.

Most children on the spectrum have strengths and interests that provide comfort, motivation and regulation. Integrating those strengths and interests into a challenging lesson can alleviate anxiety. Extra time on a preferred topic can also be used for positive reinforcement and helps build self-esteem. In younger years, most students with ASD are enamored with trains, dinosaurs, space, animals, and Legos. As they grow older, they fascinate on My Little Pony, Dr. Who, anime, Star Wars, and video games.

Use concrete and visual methods.

Children with autism tend to be visual thinkers. They think in pictures and their thoughts are like videos running in their imaginations. Opportunities to use manipulatives in math and models in science help aid in understanding. A story map in reading helps to identify elements in a story, and timelines in social studies helps to order sequences of events. And it is always helpful to show them how to do something rather than just telling them.

Develop a plan for organization.

Problems with executive functioning can actually disable a student’s ability to organize his or her classroom materials, desk, and locker. A specific plan and expectation in the area of organization is a must for these students. Without this plan, desks will be piled high with books and materials, backpacks will be stuffed with papers, lunch boxes will litter the floor, and whatever is left will be shoved into lockers. Support strategies must be put in place, such as written checklists and reminders, while providing direct guidance and instruction. It is also necessary to color code books and folders for organization.

Transitions between subjects need attention.

Many students on the spectrum have no sense of time or urgency. Often these students will be the last into your classroom and the last out of your classroom—and then they may not even know where they are headed next. That’s because it takes these students longer to motor plan moving from one activity to another. Giving them a five-minute and two-minute warning helps prepare and remind them to get ready. They will not always just follow others, though, so it is imperative these students develop a routine for transitions. For faster transitions, help them understand their schedule, materials needed, and specific room assignments.

As teachers, we lay the foundation for students with autism to learn not only content knowledge but also life skills. It is important for them to experience success. Along with their parents, we are their best advocates. Each child with autism is different, and therefore, has different needs. We must take the time to create a classroom environment in which students can achieve the goals listed in their IEPs.

Dr. O. Ivar Lovaas said, “If they can’t learn the way we teach, we should teach the way they learn.” Some might call that unfair. I ask, “Is it fair that a child has autism?”

I welcome any questions and/or comments—just drop them in the comments below.

Now go plan on making a difference in a child’s life!

Lori