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

Hopefully 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

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

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

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

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

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