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

25Jul/16

6 Tips for a Smoother Back-to-School Experience for Kids with Autism

back to school - emerging from autismHopefully everyone has had an enjoyable summer, and you have been able to have some fun with your kids! Before you know it, children will be heading back to school with new backpacks, clothes, fresh haircuts, and an enthusiasm for what the school year will hold.

However, for parents to children on the autism spectrum, the new school year brings anxiety related to lots of unknowns: the implementation of our child’s Individual Education Plan (IEP), adjustment to the expectations and procedures of the teacher, the thought of our child sitting alone at lunch and playing alone at recess, and the possibility that the one friend our child made a connection with last year will be assigned to a different classroom.

It’s enough to make a parent throw a tantrum. If you need to, go ahead. Just be sure your anxiety is not visible to your child.

Thankfully, you can use specific strategies and actions to facilitate a smoother transition back to school and a positive start for everyone involved—student, parent, and teacher. Here are some ideas to help you get through the back-to-school blues.

1. Create a social story or picture schedule for your child’s school day. Contact your child’s school to access your child’s daily schedule. A picture of your child’s teacher and classroom may also be helpful.

2. Promote communication between previous teachers and your child’s new teacher. The teacher should share teaching techniques and behavior strategies that worked well. If your child attends specific therapies during the school day, have those specialists talk with your child’s teacher as well.

3. Make sure all of your child’s medical information is up-to-date with the school. If any medications have changed during the summer, make sure the school notes the change. Inform the teacher of any allergies.

4. Keep in mind that although you need to advocate for what is best for your child, you also need to work cooperatively with the school. Review your child’s IEP, and make contact with the new teacher—introduce yourself and touch upon the most important points of your child’s disability. Do not assume teachers already have all of this information. Be honest and open with the teacher. He or she has the same goals for your child as you do. I have also found that teachers I don’t necessarily click with have had the most positive results with Hannah.

5. Volunteer your time making materials, being an extra hand, or helping with special projects and events.This is a valuable way to observe how the classroom operates. And by eliminating some of the teacher’s busywork, the teacher will have more time with the children—including yours.

6. If your child is a bus rider, find out if the bus driver, bus number, and pick-up and drop-off times are the same as the previous year. If the driver has changed, contact the new driver to discuss any concerns.

I hope everyone has a successful transition to the new school year!

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

Take care,

Lori

05Jul/16

Ten Commandments for Special Needs Parenting

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On June 9th of 2016, Liane Kupferberg Carter published Ten Commandments of Special Needs Parenting in The ProsenPeople. Each of the commandments listed in the article stirred strong emotions deep within me due to the origin of its paradigm—autism. I do not list or comment on all of the ten commandments; however, I believe they are of equal value.

Thou art the biggest expert on thine own child.

The first commandment, “Thou art the biggest expert on thine own child,” generated thoughts of all of the proactive strategies I have incorporated into our daily lives which ensure success for Hannah, my eleven-year-old with autism. Executive functioning challenges serve as an Achilles heel to many individuals with autism spectrum disorder—almost disabling them.

This manifests in Hannah with initiating a task, estimating how much time a task will take, completion of projects, inability to multi-task, transitions, processing verbal sequences, ability to verbalize emotions, and understanding others’ feedback and then incorporating it into her work. Identifying these specific struggles and incorporating tools to counteract their undeniable pitfalls has led to more independence and success for Hannah.

It all flows from the first commandment: Because I know my daughter better than anyone else, I can see what she needs and fight to get it for her.

Thou shalt not talk about thou child in front of him.

As Hannah grows older, Liane Kupferberg Carter’s third commandment, “Thou shalt not talk about thou child in front of him,” has become increasingly important to her. Just like Hannah will not tolerate others speaking uncomplimentary about anyone else in front of her, she expects the same in return.

I’ve struggled to remember and honor this because interventionists were in our home around the clock for a few years. Their sole purpose was to work on Hannah’s challenges. Communication between the therapists and me was vital, so I spoke freely about Hannah in front of her. Maybe I didn’t notice the negative impact because Hannah herself was nonverbal for so many years.

This history of needing to communicate clearly and freely with experts to get Hannah accurate diagnoses and assistance trained me to speak openly even with Hannah in the room. But that’s no excuse. I know I need to curb that. Hannah’s latest struggles seem to flow out of me in order to receive much-needed advice from others, but I understand how important it is to stop this. Completely.

I resolve not to speak about Hannah in front of Hannah so she can maintain a healthy self-confidence and self-value.

Thou shalt always remember that behavior is communication.

I learned when Hannah was only a baby that Liane Kupferberg Carter’s fourth commandment, “Thou shalt always remember that behavior is communication,” meant that if Hannah was behaving in an unexpected way, there was always a trigger or antecedent for that behavior.

Unusual behavior signals that something in her environment is bothering her a great deal. As a baby, Hannah would cry while being held because of her sensitivity to touch. As a toddler, sock seams would elicit pain while on a bigger scale, crowded children’s venues would provoke sheer meltdowns.

Currently, while on summer vacation, lack of a schedule or routine increases her anxiety. Hannah is trying to communicate by her behaviors—not misbehave. She just can’t find the words.

As parents, we need to listen and adapt their environment to best fit their needs, while providing support to help them overcome these obstacles.

Thou shalt accept that ketchup may indeed be a vegetable.

Without Liane Kupferberg Carter’s explanation, I’m not sure many outside of the autism community would understand her sixth commandment, “Thou shalt accept that ketchup may indeed be a vegetable.” Carter’s son, Mickey, has sensory issues and ketchup is the only “vegetable” he’ll eat.

Hannah, like Mickey, has oral defensiveness. She has struggled with food aversions since she was just over a year old. Textures aggravate her to no end. Her oral motor strength is also very poor. She can chew on a piece of steak for five minutes and still is not able to get it down.

After reading Carter’s commandment, I asked Hannah what it is about ketchup that causes her to add it to a number of foods it’s not typically eaten with? I was stunned when she got tears in her eyes from embarrassment and said, “Ketchup is tangy and smooth. Tangy masks the texture, and because the ketchup is smooth, I know I won’t choke.”

I have my answer.

Liane Kupferberg Carter’s book also shares the title Ketchup is my Favorite Vegetable.

Honor thy fellow autism parents.

Reflecting on the seventh commandment, “Honor thy fellow autism parents,” I agree there’s a bond formed by being able to understand one another’s journey.

Our children’s autism is always heavy on our heart; however, we don’t want anyone’s pity. So we try hard not to share our challenges and triumphs with those who wouldn’t get it.

The mothers that have already traveled in our shoes are a source of support and experience that allow us validation for our emotions—not to mention they speak our language, understanding terms like: joint attention, stimming, receptive and expressive language, parallel play, echolalia, executive functioning, and many more.

We fellow autism parents need each other.

Thou shalt take care of thyself.

Carter’s tenth and last commandment, “Thou shalt take care of thyself,” always came in last for me until a few years ago.

Like so many parents, with all of the therapies and doctors’ appointments for our children with special needs—not to mention some of us working full-time outside of the home—I always came in last. In fact, I didn’t figure in myself or my needs at all.

I was worn-out, my immune system was down, and I seemed to “catch” others’ illnesses very easily. My body was showing many signs of exhaustion. I knew I needed to start taking care of myself. I got on board and started to eat right, exercise, and allow myself more rest.

I do wish I would have done this more during Hannah’s earliest of intervention. I know I would have felt much better, but I didn’t feel there was any time.

Please be sure to open Liane Kupferberg Carter’s article and read in its entirety. I imagine you will be able to relate to her words as well as I did. Her experience aids our journey and gives words to an experience that sometimes we don’t have the time to pronounce.

If you could add to Carter’s list of commandments, what would you include? I’d be interested to know—just drop them in the comments below.

Take care,

Lori

20Jun/16

A Place to Gather

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As this year’s Autism Society of America’s National Conference draws near, I am reminded of last year’s conference in Denver and how much information I gleaned as well as the overwhelmingly positive atmosphere with its strength in community. While reflecting on last year’s conference, I thought now would be a good time to share some of the valuable information I was able to take away last year.

Meet and Greet

A Meet and Greet was held the evening before the conference began with the President and CEO of Autism Society of America (ASA), Scott Badesch. Upon arrival to the room, I overheard him in the hallway discussing the numerous ways that ASA is making a difference with families with a loved one on the spectrum. I did not know about their call center, which answers questions about autism Monday through Friday from 9:00 a.m. until 9:00 p.m. Mr. Badesch said that one of his sons plans his life around ASA’s conference.

I then expected to walk into a room full of mothers to kids on the spectrum, special needs educators, and therapists. Instead, I walked into a room full of adult versions of my daughter—I was seeing all of her behaviors reflected in person after person. With my laptop in hand, I figured that if I was going to gain knowledge at the conference, the adults right next to me—complaining about the room’s acoustics and lighting—would be my best resource. As I asked questions and recorded their answers, it took them a while to understand my position, but once I showed them Hannah’s picture and told them I was a teacher and wanted to know what is best for my students and for Hannah, they were happy to help.

The first thing they shared was that they were grateful to have a place to gather. They said they don’t often feel the same hospitality.

A man named Jean shared with me that a minimized schedule on his computer is of the utmost of importance for him because of lack of executive functioning skills. Verbal directions/lists continue to be a challenge for him. He said his sensory challenges make it necessary to rate clothes on how long he is able to bare them being a “second skin.”

Another man, Carl, shared with me that he chose computer programming for his career because he can count on one hand the number of people he has to talk to in one day—he chooses his interactions. He called it self-preservation. Carl continued to say that home is a safe place for him after he has had to hold it together all day.

Before long, more autists started to share with me. When I asked a man named Jeff about Hannah’s eye contact, he said, “You can tell me to look at you or listen to you; however, we are going to tangle if you tell me to do both.” He said that his honesty still gets in the way.  Jeff stopped me when I told him that Hannah had high-functioning autism. General euphemisms are quite offensive, he explained, urging me to be careful about repeating Hannah’s label, as the label is only to be used for understanding her behaviors. He also shared with me that meltdowns can only be controlled by understanding their antecedents (triggers) and that they are a child with autism’s last resort.

Some of the adults on the spectrum were accompanied by their champion moms and/or service dogs. It was fantastic to see this support and advocacy.

I’m glad I asked questions, and they were willing to take time to answer. This input was already worth the price of admission.

Keynotes, General Sessions, & Awards

Richard Wolf, USA TODAY reporter and autism advocate with an adult son on the spectrum, started each morning as the conference’s moderator. What I enjoyed the most about his moderation is that he would start each day with a recap of the prior day’s poignant teachings. If I had missed a valuable session, he summarized its lesson. He quoted Cathy Cherry, Certified Autism Specialist, by saying, “Sometimes you just have to turn the spotlight off your special one and take a bath.” His flair with words set the tone for a positive atmosphere for the rest of the day.

I asked Richard for his notes, and he didn’t hesitate to email them right away. To save time and money, he was also kind enough to share his cab back to the airport at the end of the conference.

Dr. Margaret Bauman shared her 30 years of experience with the study and treatment of autism, while Dr. Lucy Jane Miller shared her thoughts on the connection between autism and Sensory Processing Disorder. Dr. Bauman said that autism can be masked in the early years because it takes a while for the nervous system’s pattern to develop. Dr. Lucy Jane Miller continued to say that bright kids can be stuck in bodies that do not work.

A panel of five, including Temple Grandin and Jennifer Cook O’Toole, closed the conference with a Keynote session on twice-exceptional (giftedness accompanied by disability) children. They examined the importance of bringing awareness to this population in order to ensure the best future for our brightest minds.

My favorite award of all—Outstanding Advocate of the Year—went to Conner Cummings, wearing mouse ears for the ceremony! Conner and his mother, Sharon, are responsible for the newly passed Conner’s Law in the state of Virginia, which requires noncustodial parents with criteria-approved special needs children to pay child support to the custodial parent if support was not requested or initiated before the age of eighteen. It was a joy and inspiration meeting them both.

Breakout Sessions

I attended several breakout sessions over the next three days. A young woman in her early twenties named Chloe Rothschild spoke about her challenges with receptive and expressive language along with sensory struggles. She said it is important to become a detective to try to understand what your body needs.

I was happy to see Indiana’s own Cathy Pratt speak about the role of collective impact in facilitating services. In the decade since Hannah’s diagnosis, I have seen such advancement in the awareness, intervention, and advocacy for autism in Indiana.

Jennifer Cook O’Toole spoke about using pop culture to build emotional vocabulary and boldly go where no communication tool has gone before. Jennifer’s insight into Asperger’s Syndrome was invaluable. She has been a remarkable resource to me and role model for Hannah.

David Finch used his experiences with Asperger’s in the classroom to give humorous, but helpful, teaching tips. He said the most important words for teachers are love, understanding, guidance, and adaptability. And, he blamed his five-minutes-late entrance on his lack of executive functioning skills.

A sibling panel provided information on how it actually feels to have a brother or sister on the spectrum. They reminded me that a sibling relationship is the longest relationship anyone will ever have with another person. The most understood comment was that outbursts are hard—so, sometimes you laugh because you don’t want to spend the rest of your life crying. Their honesty was truly appreciated.

My last breakout session included Temple Grandin, Jennifer Cook O’Toole, Brigid Rankowski, Lindsey Nebeker, and Chloe Rothschild, who discussed women’s empowerment to be themselves and like themselves as The Sisterhood of the Spectrum. They believe that no woman should have to navigate the journey alone.

Once again, amazing women paving the path for our girls that are battling heavy inner struggles. Jennifer’s podcast, Speaking Geek, and her website, Asperkids, and her numerous New York Times best-selling books are this population’s best resources.

Jennifer Cook O’Toole

I look forward to this year’s conference in New Orleans and hope others will join! You’ll find strength in community at the conference and a feeling of empowerment that we, as parents, don’t often feel.

Remember, even though your experiences with your loved one on the spectrum are your own, you don’t have to handle them alone.

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

Take care,

Lori

06Jun/16

Special Siblings Not Left in the Shadows

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The day after the birth of my son, Connor, my mother brought Hannah to the hospital to meet her little baby brother. It was going to be a big moment for all of us.

Two-year-old Hannah had just learned to walk with her orthotics and was wearing her official Big Sister T-shirt. I held Connor in my arms in the bed, and my husband was by our side. Hannah had not seen either of us in a day-and-a-half.

As soon as she walked into the hospital room we called her name and told her to come over to meet her little brother.

Nothing.

No recognition at all that Connor and I were even in the room. She played with the knobs on the hospital bed. Then she went over to the window. After repeated prompts for her to acknowledge her baby brother—and us for that matter—my husband picked her up and placed her with us on the bed. She then began to play with the food tray and its stand. Still no acknowledgement that anyone else was in the room.

I sobbed. And when I say I sobbed, I mean I wailed.

At that moment, the hospital chaplain passed our room and walked in. I am sure he probably wished he hadn’t walked into this situation. He offered some words of consolation that helped me calm down. After recovering from my mini-meltdown, I resolved to manage my expectations for all future exchanges between the two kids: Whatever tone or atmosphere my daughter sets in a room, I would not allow it to affect my relationship with my son.

And that started Connor’s journey of never being in his sister’s shadow.

If you are raising several children, you know it is difficult balancing time between them. However, if one of your children has Autism, it may even seem impossible. But finding a balance is both possible and important.

The Challenge of Limited Attention

When we first received Hannah’s diagnosis, I simply could not see the big picture. I was blindsided by my daughter’s uncertain future. I allowed Autism to define our family simply because of all the necessary appointments. Hannah’s sensory processing disorder, meltdowns, anxiety, and food aversions consumed our time and attention, but thanks to early intervention, Hannah did grow a little more independent, and my time with her didn’t seem so pressing and urgent for her to progress.

Even though Hannah’s behaviors have become less challenging, Autism continues to affect our entire family unit, especially Connor. Children with siblings who have Autism have unique experiences, even if you only consider the family’s time spent with doctors, therapists, and behavior consultants. Children with Autism also require more attention than their siblings due to challenging behaviors and/or lack of independence. Hannah has always required prompting and help with eating at the dinner table—I constantly have to tell her to sit down and take another bite, while Connor sits across the table quietly eating his meal. Hours can be spent on Hannah’s homework due to poor focus, lack of executive functioning skills, and anxiety, while Connor can do almost all of his without any help from Mom. The correction of social pragmatics also takes a lot of time and attention. With Hannah needing all of this from me, I use to often question if Connor was getting enough attention and resources. I found my answer in the summer of 2015.

The Worry: Will the Sibling Be Okay?

The sibling relationship is usually the longest-lasting relationship our children will have. This realization came to me last summer when I attended the Autism Society of America’s National Conference. I sat in on a panel of adult siblings from different families who discussed their journey with their brother or sister with Autism. I had chosen that break-out session with a specific question I needed answered: “How can I raise my son (9) with a sister (11) on the spectrum so that my son never feels contempt towards me?”

I was confident when I raised my hand—only to fall to pieces with tears and a shaky voice when addressing siblings who had already walked in my son’s shoes. In my heart, I knew that I was doing the best that I could as a special needs and single mom; however, the mommy guilt and doubt always loomed. As each sibling went down the table, one by one, to respond to my solemn question, I was comforted by their words. My son was going to be just fine—no blame.

Ideas for Committing to the Sibling

How do I know Connor is going to be just fine? I’m making it so.

Make sure they understand their Autistic sibling’s diagnosis

Connor has always been raised knowing that his sister has Autism. In his younger years, we would read children’s books about Autism, and I made up analogies he could comprehend to help him understand some of her challenges—it was important that these explanations were at his developmental level.

Don’t allow mistreatment

I don’t allow Hannah to get away with mistreating Connor. It is extremely difficult for Hannah to hear Connor receive praise. She sees praise for him as a criticism to her. For example, after looking at a graded math paper, I will tell Connor that I’m proud that he is so smart in math. She takes that as a slam that she is not good in math. A compliment to Connor turns out to be a nightmare for her and then for us. We continue to fight this battle.

Encouraging respect for the Autistic sibling

I always try to help him remember that Hannah did not ask for Autism or choose Autism; it’s just how she was made. On Hannah’s bad days, I commiserate with him, though we in no way speak disrespectfully about Hannah. Instead, we discuss how hard it is for both of us.

Time with Mom

I plan special times when I take only one child to a fun activity just for them, and the other one will stay with someone else. This affirms my love for each child individually.

Even daily, though, Connor and I also have special things that only the two of us do together. We read chapter books together—to date, we’ve read almost 100. We have a special goodbye—an I love you hand signal known only to us. The two of us really enjoy doing science experiments together. I sing “Ain’t No Mountain High Enough” to him while tucking him into bed.

These activities have created connection and tradition between us.

Outside activities and friends

Connor is also a Boy Scout and does Tae Kwon Do, because I don’t want to limit his opportunities because I’m exhausted from Hannah’s needs. Through those activities and school, Connor has a great set of friends who are tight knit. When he’s outside of our home with them, he is 100 percent kid. He deserves that. These kids’ moms understand our situation and help in any way they can without judging. They are some of my best warriors and part of my “net.”

Complicated Sibling Love

Just the other day, Hannah realized that she had hurt Connor with her behavior.  She simply asked, “Connor, do you love me?”

Connor said, “Of course I do, Hannah, but it’s a complicated type of love that you sometimes don’t make easy.”

The Gifts of Having an Autistic Sibling

Simply said, our children without special needs need our time, too. We do not want their contempt or scorn. In return, we raise mature children who relate to a wide range of people because they truly understand that different does not mean less than. They will shine outside of the home because they have the intrinsic motivation to do so. It is extremely important that we focus time on their passions as well as our Autistic child’s. Their “whole” person is important, too.

Everyone in your family deserves and needs special time with you.

When we do it right, our children will know that there ain’t no mountain high enough, no valley low enough, nor river wide enough, to keep us from getting to every one of them.

Take care,

Lori

 

 

16May/16

A Letter to Moms New to the Spectrum

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Dear Friend,

Nine years ago my daughter, Hannah, was diagnosed with Autism. Our world shattered—I’ll bet yours is, too.

After her neurologist concurred with our pediatrician’s suspicions, the only thing that kept me from dropping to my knees was the need to immediately become as knowledgeable as possible about her condition to get her the help she needed.

Time after time, I would wake in the middle of the night only be reminded of the probable limits specialists had projected for Hannah’s future. Do you do the same? I yearned for a crystal ball that would reveal whether Hannah’s destiny had already been determined. Without a crystal ball to disclose Hannah’s future, I clung to the only thing that I could access: HOPE.

You, too, must have hope. You are your child’s best advocate, champion, and intervention strategist—no one knows your child better. The two of you interact every single day, so you see small shifts that others may miss. You have insight into what your child might one day be capable of, because of these intimate interactions. And you’re the one who can make things happen, setting appointments, meeting therapists, following through with doctors’ orders. When you hope for the best possible outcome, nothing can stop you from getting the best possible treatment.

But this is not a journey that you ever expected to navigate—an uncertain future of your child’s level of functioning and independence. You will be inundated with information. While it is important to become an expert on Autism to better understand and help your child, I warn of the danger of becoming obsessed with devouring every article, book, and video on Autism.

Remember that Autism is only part of your child, not all of who they are. Focus on what they can do, rather than always placing the focus on what they can’t do. Leave that to the therapists. Without regrets, therapy was a full-time job for Hannah.

Even though individuals diagnosed with Autism share a common set of behavioral characteristics, no two individuals will be alike. Become your child’s best detective by documenting everything about them that could be contributing to their current struggles and challenges. An example would be that Hannah would flap (self-stimulating behavior) because she didn’t have any language or way to communicate. Important questions may include: What senses are out of sync? What interests them when they are “in their own world”? What are the antecedents that trigger meltdowns? Some children exhibit challenging behaviors. Realize that these behaviors may be serving a real purpose, and take note of them to pass on to experts working with your child.

Right now you are probably feeling sad, guilty, and cheated. Your child is different and because of that, you, too, are different—changed. You simply cannot make sense of the diagnosis. This grief is an undeniable state; however, your child’s story has not yet been written. You are only in their first chapter. Do not waste valuable time mourning—invest that time in getting help for your child. Like me, you will most likely have to do them both at once. We do not choose grief, so we must find ways to process it; yet, find ways to do it that don’t slow you down from securing the right specialists and learning all you can.

As mothers, we can’t help but feel responsible in some way for this diagnosis; however, this was not something within our control and it is not our fault. No blame. It’s a lie that will only hold you back and tempt you to lose hope.

I know it’s hard, but when you find yourself comparing your child with others the same age, stop. Comparison is the thief of joy. And it, too, will hold you back. Instead, celebrate the small accomplishments your child makes in his or her own time, because each accomplishment will lead to much larger ones.

If I were to have a fight song or mantra for Autism, its theme would be to inform parents on the benefits of early intervention. Without a doubt, an intensive and structured early intervention program that focuses on communication, social, behavioral and educational aspects of your child is critical. When children are young, their brains are still developing; their neuropathways are still able to be shaped. The earlier these pathways are rewired, the easier it is to do so. Take advantage of as many interventions as possible. I say this because some therapies might not be advantageous for your child. For example, because of sensory challenges, Hannah almost failed to thrive. She needed to eat and would eat only a tiny selection of foods, so the gluten-free/casein-free diet experts recommended was not an option for us. You need to find what works and walk away from what doesn’t.

Day after day, I used to continue to ask myself, as you will, “Will Hannah ever catch up with others?” I am content to say that in some areas my daughter has, and in other areas she has not. At some point along our journey (she is now 11 years old), that daily thought ritual disappeared. I didn’t let the dream go, not entirely; it’s simply become less important to me. And that is healing.

You’ll find that your child will become more independent, because you will get them all of the therapies they need: speech, occupational, developmental, physical, aquatic, equine-assisted, feeding, and social/play. Your doctor may also suggest specialists such as an audiologist, neurologist, developmental pediatrician, and/or gastroenterologist.

Yes, this will take a Herculean effort at times that will leave you feeling overwhelmed; however, the pay-offs are worth it—especially when they mutter, “You are my angel’s wings.”

Have hope, my friend. You can do this.

Take care,

Lori

 

02May/16

What are you doing with what you’ve got?

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At church a few months ago, our pastor asked the poignant question, “What are you doing with the gifts you were given to help others?”

I knew I could pass that question with flying colors. After all, I’ve been a public school teacher for the last 23 years—my passion and gifts are obvious.

Then he asked the question again, worded in a slightly different way: “What are you doing with what you’ve got?”

This brought another thought to mind: my journey over the last nine years to make a difference in my daughter’s life.

My oldest child, Hannah, was diagnosed with autism at the age of 18 months.  Although this felt like a tragedy for our family, we were also blessed the autism was detected so early. Early intervention made a huge difference in her life.

Right before Hannah’s diagnosis, I found out we were expecting our second child, Connor, and that autism could be genetic. While excited about the arrival of my son, I knew my chances of having another child with autism increased significantly, as autism presents more often in boys than girls.

Only 20 percent of marriages survive an autism diagnosis. Ours did not. We were both educators who felt helpless trying to teach our own daughter. The guilt of a special needs parent is enormous.

Hannah is now 11 years old and in the fifth grade, while Connor is nine and in the third grade. Hannah enjoys art and piano; Connor enjoys Tae Kwon Do and his Legos.

And, me?

I teach during the day, run the kids to their evening activities, cook, help with homework, take care of the house, and try to fit in exercise. In other words, I try to keep my head above water. Some days I do better than others.

So, when our pastor asked what we can do with the gifts we were given, I felt the need to give the autism community a website specifically for families and friends of those affected by autism—a place not only to better understand the daily struggles of individuals on the spectrum and their families, but also to feel security in knowing that one does not have to be alone on this journey.

I look forward to publishing a new blog post on the first and third Monday of every month, to inform and encourage.

Take care,
Lori