Category: Special Needs

Fidgets in the Classroom: Why? What? How?

By Courtney Bills and Tera Robinson

We are right in the middle of the fidget spinner craze! The debates and rants have died down a bit because school is out for summer and no one has a problem if children are paying more attention to their fidget spinner than they are to their screens. Or the fidget spinners are inside while the kids are swimming, riding bikes and playing at the park. But… School starts soon and the discussion will surely fire back up! Hopefully, this post will help give some thought and good ideas to implement and help calm the craze, especially in our classrooms.

This time, I’ve teamed up with an amazing elementary teacher with 15 years of experience in classrooms, Courtney Bills. She has used fidgets in her classroom and gets everyday practice to implement sensory strategies into her teaching as she works with students, teachers and her own children who have sensory processing difficulties. We’ve collaborated together to help students and teachers for several years and she has some great ideas to successfully implement fidgets in classrooms. Courtney is going to share HOW she implements fidgets into her classroom at the end of this article.

*This post contains Amazon affiliate links as a convenient way to find products and tools recommended.

WHY USE FIDGETS IN THE CLASSROOM? (by Tera)

A fidget is one of many tools that helps students self-regulate their attention, behavior and learning. Fidget spinner marketers have done a fabulous job in gaining the attention of the general public about something people have been doing for ages and that occupational therapists have been recommending for decades! You’ve already seen fidgets in many forms, even before the invention of the fidget spinner! Twirling hair, tapping fingers, bouncing knees, clicking pens, doodling…

Fidgets can help a person who is having difficulty paying attention, holding still, or behaving appropriately to seek out movement (vestibular), muscle (proprioceptive) and touch (tactile) sensory input that will keep them alert, attentive and maintain appropriate interactions during important daily activities. For students in a classroom, appropriate daily activities would include sitting still, paying attention, listening to the teacher, following directions, staying on task, completing work assignments and participating appropriately in classroom activities with others nearby.

Maybe you know a student or two or three… who may struggle with some of these appropriate classroom behaviors. Students with the following behaviors would benefit from using a fidget:

  • difficulty paying attention, listening and following directions
  • difficulty maintaining alertness (may exhibit “dazed” looks)
  • difficulty holding still or staying in his/her seat
  • difficulty keeping hands to her/himself and staying in his/her own space

WHAT FIDGETS WORK IN THE CLASSROOM? (by Tera)

The key to a successful classroom fidget is that it that works as a tool, not a toy. Each student will respond differently to different fidgets. I’ve seen a variety of fidgets work very successfully in classrooms, including simple fidget spinners for a student or two and fidget cubes for a few more, but the key is still that it is used as a tool, NOT a toy. Students have many other classroom tools such as pencils, crayons, scissors, paper, desks, chairs, books, computers, iPads…  Teachers teach and maintain guidelines about appropriately using these classroom tools and not allowing them to become toys. (A few examples: A pencil is for writing, not sword fighting. Scissors are for cutting paper, not hair.) Teachers should also teach and maintain guidelines for classroom fidget tools. A successful fidget tool will not be the focus of a student’s attention, but will be used in the background with the focus of attention being given to the instruction, activities and learning in the classroom. Students should be able to answer questions, participate appropriately and not disturb others in the learning taking place while using the fidget. One reminder is that novelty will always create excitement, but once it is consistently used in the classroom, the excitement wears off. So if fidgets are used consistently in the classroom, they will become old news to many students and the ones who need them will keep coming back for them.

I really love this video that explains and gives guidelines on how to use fidgets in the classroom as a tool and not a toy: Long Story Shorts – Fidgets. Teachers and parents, show this to your students so they can learn how to use a fidget effectively to help them learn!

There are a few practical considerations to take into account when choosing fidgets for the classroom:

  • Price is important in a full classroom of young students. Expect that fidgets will be lost and need to be replaced, so I try to only buy fidgets that are about $3 or less.
  • The ability to use hands for learning activities is another important factor. Fidgets requiring two hands are fine for listening and discussion, but if a student is writing, at least one hand should be free to use a pencil. You can add a clip to tie to belt loops or a pencil topper fidget to avoid dropping or losing the fidget.
  • Simple and plain is best for classroom fidgets. Remember that fidgets should NOT be the focus of a student’s attention, so entertaining factors, such as stress balls with eyes that pop out when squeezing or bright, flashing lights or any noisy fidget, should be avoided in the classroom.

Several of my awesome teacher friends have helped me create a list of their most successful fidgets of the many that I’ve recommended in their classrooms over the past few years.

Boinks Marble Fidget

Tangle Jr.

Tangle Jr. Classics - Set of 3 Classic Tangle Jr. Fidget Toys

Stress Balls

Silicone Bracelets

Nut & Bolt Pencil Toppers

Fidget Pencil Toppers on Pencil, Set of 6 (3 Wing Nuts and 3 Nuts'n Bolts), Colors Vary

Coil Bracelets

Scrubber Sponges

Yarn

Lion Brand Yarn 545-201 Landscapes Yarn, Boardwalk

Sticky Back Velcro Tape

Model Magic Clay

Kneadable Erasers

Kneadable Eraser, 36 count tub

Elastics

Paper Clips

Binder Clips

HOW CAN FIDGETS BE USED SUCCESSFULLY IN THE CLASSROOM? (by Courtney)

Although many children can be taught in a traditional classroom without modifications, many children will find greater success with simple classroom adjustments. I have found that providing opportunities for children to discover their personal sensory needs enhances their learning, their motivation to learn, and their engagement in instruction.

I have learned a few things over the years in using fidgets and other sensory strategies in my classroom: (Although this article is specific for fidgets, all points in this section can be applied to any sensory strategy, such as seating options and brain breaks, used in the classroom.)

  • All fidgets should be taught with procedures and purpose just like turning in an assignment, sharpening pencils or lining up. You can eliminate almost all misuse of fidgets with proper training and procedures.
  • Provide more fidgets than children. Only a handful of children will “need” a fidget during carpet time, but if all children have the option, no one feels different or singled out.
  • Don’t use fidgets as a punishment for not being able to sit still or poor behavior.
  • Don’t take away fidgets for not following directions, using fidgets incorrectly, or not sitting still. Don’t misinterpret the fidget to be the cause of poor behavior, but lack of training and understanding the proper use of fidgets.
  • Most importantly, help children self-regulate and recognize when and if a particular fidget is helping him/her engage in the learning.

To help students learn how to self-regulate by using fidgets, ask questions such as:

  • How did having this fidget help you participate during carpet time?
  • Why did you choose to use this fidget to do your assignment today? Did it help you or distract you?
  • What fidget could you try next time that may help you stay focused?
  • I noticed that this fidget seemed to help you get your work done. How did it make you feel inside? Why do you think it helped you?

Fidgets are one of many sensory strategies that we use to support student success at school. Ask your occupational therapist for recommendations to meet the specific needs of your individual child or student. You may also be interested in learning about the importance of full recesses and seating options for sensory strategies to be used in combination with fidgets at school.

Every Minute of Every Recess for Every Student!

Classroom Seating Options for Students Who Struggle Sitting Still

 

Courtney Bills is a wife and mom of three awesome kids with their own individual sensory needs. She has taught in elementary classrooms for many years and is now a National Educational Consultant, with a focus on literacy instruction through C & B Reading, LLC. She works locally in Utah to help integrate an inclusion model for all students by providing necessary accommodations in the classroom for engagement and success of all learners.

 

*I am part of the Amazon Associates Program. If you choose to buy any of these products from Amazon, I’d love for you to purchase them through the links on my website to help support the work I do with Yums Theraplay! Thank you!

 

See Tera talk about fidgets in the classroom on FOX 13 The Place here.

 

I’m All Right Book Review by Larry Haddock, a survivor of a Traumatic Brain Injury

I’m excited to share Larry Haddock’s book about his life and experience with a TBI (Traumatic Brain Injury). Larry and I met at Brigham Young University during our freshman year. He and his friends were just as Larry describes them in his book. Since I’ve known Larry, he’s always had a zany sense of humor and has no shame about it. Larry loves to make people smile and laugh. Larry and I were acquaintances during this time and I’m grateful that we knew each other well enough to remember one another when we met again 5 years later. After graduating from OT school in Colorado, I started my first job as an occupational therapist in Ogden, Utah, where I’d grown up and Larry’s family had recently moved. In that small circle of therapy in Ogden our paths have crossed many times in the past decade and a half.  I loved reading Larry’s book and recognizing his humorous optimism among the names of BYU college friends and therapy friends from Ogden. Larry has often reminded me as we’ve crossed paths, that my OT title really stands for “occupational terrorist”.

Larry survived a car accident after he had recently returned home from a mission in Spain for the Church of Jesus Christ of Latter-Day Saints and was attending Brigham Young University. His book shares his life story, highlighting important experiences and people before and after that have kept him strong through his life-altering traumatic brain injury.

I am inspired by the picture of Larry’s determination in the rehab gym, wearing a sweat-soaked t-shirt, walking on a treadmill while an uneven thump of his left foot is heard in the background. Larry’s friend, Hope, describes this scene so perfectly in the forward of the book. Larry inspires me to keep pushing through life’s challenges, even at a slow pace and in my sweaty mess.

Larry and I started out on similar life paths. Our paths look quite different now. I’ve often pondered this. But as I read his book, I realize that our life’s missions are still the same. We are still striving for the same purposes: serving others with Christ-like love,  enjoying and caring for our spouses and families, and continuing to progress personally and professionally. Larry and I (and many others) are all still very much the same in our purpose despite the difference in our life’s circumstances. Larry gives me hope and inspiration to keep going despite my challenges, with a smile on my face.

This book is quite an accomplishment for Larry and I only expect more from him in the future. He not only inspires, but gives a realistic picture of life after a TBI. Anyone in the Utah area who reads this will also be introduced to a variety of community resources that Larry has found to support his quality of life to continue to participate in fulfilling his life roles.

Larry truly has a gift of optimism to inspire others. Larry’s voice in this book is the real, authentic Larry. He’s been blessed with such a wonderful support system of family, friends and professionals who have made possible his determination to reap the rewards of accomplishment. All will be inspired as you read Larry’s story.

You can buy Larry’s book at lulu.com. He also did a short interview about his book on Good Things Utah.

How to be a Friend to Someone with Autism

Happy Autism Awareness month and Happy Occupational Therapy month this April! What better way to celebrate than by sharing some tips on how to be a friend to someone with Autism from an OT!

Most likely, you know someone with Autism. Most likely, you want to be kind and friendly with them, but are not quite sure how to interact and go about building a friendship. They may act differently from you, but they share a similar desire to have a friend with whom they feel safe. They and their families appreciate when someone will take the time to really get to know them and build a friendship. Over many years, I’ve been able to enjoy many friendships with people who have Autism. My Autistic friends make me smile! I’m grateful for the many lessons they’ve taught me and the memorable moments we’ve shared.

CHARACTERISTICS OF AUTISM

When interacting with someone with Autism, it’s important to recognize the basic defining characteristics of Autism. As you’ll notice, these defining characteristics listed below make social interactions especially difficult for them. Recognize that all these characteristics may make the Autistic person uneasy with a new person initiating social interaction, but does not mean people with Autism do not want friends!

  • Social Skill Difficulties
  • Communication Difficulties
  • Repetitive Behaviors, Routines and Isolated Interests
  • Sensory Processing Difficulties

“THE SPECTRUM”

“Autism Spectrum Disorder” is the official name of the Autism diagnosis. “Spectrum” is used to define a very wide variety of behaviors that encompasses the above characteristics. Each person with Autism will exhibit these characteristics very differently. Each person with Autism is unique and building a friendship with them will mean you must get to know each individually. Below are some clusters of behavior you may see from people on the Autism Spectrum.

Social Skill Difficulties: 

  • May not make eye contact; may be uncomfortable being close in proximity to new people; may find different ways to get your attention, such as throwing objects.
  • May not recognize social cues as to when to stop talking; may not recognize how to enter a group to socialize; may have difficulty learning to share with others.

Communication Difficulties:

  • May not speak, but understands many words or phrases; may only repeat words or phrases; may use alternative ways to communicate, such as pictures or hand gestures.
  • May speak and understand well, but very literally; may not communicate tactfully; may talk excessively.

Repetitive Behaviors, Routines and Isolated Interests:

  • May use movements, such as flapping hands or rocking back and forth, when excited or nervous; may enjoy playing with the same objects or doing the same activities over and over, such as lining up cars or watching fans spin; may get nervous and upset when going to new places, getting new shoes, having furniture moved out of their familiar spot or having new people in their safe environments at home or school.
  • May want to talk about the same topic in detail all the time, such as Minecraft, Pokemon or dinosaurs; may not recognize subtle social cues that you are ready to change subjects or stop talking; may get stressed or not function well through seemingly small changes, such as a new haircut, long holiday weekends or an assembly that changes the school schedule.

Sensory Processing Difficulties:

  • May be over-sensitive to normal amounts of sensory input around us: such as lights seeming to be too bright; noises seeming to be too loud and needing to cover his/her ears; being startled and seeming to over-react to accidental bumps or a pat on the back;  refusing to touch or wear certain textures; being bothered or distracted by smells; being unable to tolerate tasting a variety of foods; being scared of movement activities, such as swinging.
  • May be under-sensitive to normal amounts of sensory input around us: intensely staring or watching others or objects, such as spinning fans or wheels; frequently humming or making his/her own noises; craving hugs, always fidgeting or seeking out certain textures to touch; smelling people and objects; licking, mouthing and chewing on many different objects, not just food; craving movement, such as spinning, jumping and rocking.

HELP THEM FEEL SAFE

When you approach someone with Autism, address them by name in a pleasant, non-intrusive way. Be calm, avoid light touches and loud entrances so you don’t startle them until you become familiar with their sensory processing preferences. Be sure to be predictable or tell them what you’re doing so they know what to expect.

Watch and observe to see if they have a toy, a book or maybe a shirt that they may have an interest in. How can you find a way to interact over something that feels safe or enjoyable to them? With people who speak, you can discuss the subject, listen and ask questions and share their interest. With people who don’t speak, how can you enjoy an activity together? Maybe you can hand them cars from a pile as they line them up, careful not to interfere in their routine. Maybe you can both hit balloons up into the air together.

LET THEM SET THE PACE

Some people with Autism may need to take your interaction slower than you’re used to. They may not be ready to look at you, respond to you or answer your questions. These behaviors don’t mean they’re not listening. You can tell them, “That’s ok. We can talk more in a while. I can wait.” Try again later. It may be that you have to do this over several encounters until they are comfortable with you. They might be willing to give high fives or fist bumps before they are ready to talk.

Don’t give up! And don’t ignore them! Most people with Autism understand more than you realize and feel the effects of being ignored. Be patient and keep trying to be friends with them.

Some Autistic people will be overly excited and want all your attention. When you’re first making friends with them, share that excitement and give them attention. After your friendship is built and you learn to trust each other, you can start to change the pace slowly to also meet your needs by talking frankly, but politely. “Hey, how about you spend a few more minutes talking about Minecraft and then I can tell you about the new things I did yesterday?!”

DON’T BE OFFENDED BY THEIR BEHAVIOR AND COMMUNICATION

Don’t assume that people with Autism are being rude, disrespectful or selfish as they interact with you or others. If you find yourself thinking that their behavior or communication is any of these things, remember they inherently process information and think differently than you, especially social communication. Quickly forgive any offense and be patient as they learn. Just as you are learning how to interact with them, they are learning how to interact with you.

Be sure to clearly tell them what behaviors you appreciate in your friendship, such as, “I like when you smile at me when you see me! It makes me feel like we are friends!” or “Thank you for sharing your toys with me! I have fun playing with you!”

POLITELY ASK SINCERE QUESTIONS

If you ever have questions about how to be a friend to someone with Autism, be sure to ask parents, teachers or friends who know him/her well. They will have insight into their interests, comforts and unique ways of socializing and communicating with others. Many parents and teachers are very happy to help others willing to take the time to understand and get to know their child/student.

If you are in a teaching capacity for someone with Autism, recognize that maintaining a safe and trusting relationship with these principles will create a crucial foundation before you can help them stretch outside their comfort zone.

Enjoy the journey of friendship with your unique friends with Autism!

 

“The most I can do for my friend is simply be his friend.” –Henry David Thoreau

 

See Tera talk about how to be a friend to someone with Autism with FOX 13 The Place here.

6 Dos & Don’ts After Recognizing Your Child is Struggling & Receives a Special Needs Diagnosis

Your child’s been struggling and you’ve seen the signs, hoping that maybe your fears are wrong. You’re doing everything you can to help him and searching out resources. Maybe you are just recognizing the concerning signs or maybe you have just received an official diagnosis or maybe you’re in the middle of a long search, trying to find answers about why your child is struggling. Your emotions are intense and raw and tears are always close to the surface. The reality of your demands in caring for your child and the emotions that come along with that are overwhelming. Where do you start?

After over 15 years of working with children and adults with a wide variety of disabilities as an occupational therapist and with input from some wise and amazing parents of children with different special needs, I’d like to share 6 dos and don’ts to keep in mind while on your journey of parenting a child with special needs. The child you love is counting on you. You can do this!

1. Do educate yourself from reliable sources.
    Don’t believe that anyone has a crystal ball to predict what your child will do or become.

“Education [has] led to less frustration for me. I learned my daughter was having a hard time, not giving me a hard time. Talking to other parents helped me feel less alone and that I wasn’t crazy,” said one mother of a daughter with Sensory Processing Disorder. She also recommends finding support groups in physical locations or online.

Another mom of a son with Autism says, “Understanding why [he] has certain difficult behaviors has made all the difference in the world as I try to cope with them. [He] does a kabillion things that drive me BONKERS…, but when I started learning about the reasons why [he] might be acting in these ways and the science behind it, suddenly it was more fascinating to me than it was annoying.”

Education helps you understand how to help and support and accommodate for your child. You will learn what can be expected and what can’t in different areas. You learn how to interact, how to create the best environments, what services, therapies, treatments, products and equipment may help. Parents who are always seeking out education will find the newest research and innovations on their child’s condition.

Seek out reliable sources and recognize not all resources are trustworthy. Ask doctors, therapists, teachers, and other special needs parents who are familiar with your child’s concerns about good resources. Internet searches will help you find many, but be ready to sift through them to find good and dependable sources and be emotionally prepared to deal with the worst-case scenarios you will find. One mom was given a diagnosis while her micropremie baby (born weighing less than 1 pound, 12 ounces or before 26 weeks gestation) was in the NICU (neonatal intensive care unit). “The doctor had given me lots of information, which I only remembered part of what he was saying [because my] emotions started kicking in. So I googled it… BAD idea… which made my anxiety even worse. Google is great, but it’s always [the] worst-case scenarios.”

Parents always want to know what to expect in the future. Doctors, professionals, experts and other resources want to give realistic expectations. But, no one has a crystal ball for what to expect for your child. Use your child’s prognosis as a guide, not a determination of a final outcome. Sometimes a child has better outcomes than expected and sometimes there are more complications than expected. Take it day by day and do your best with what you’ve learned.

2. Do create, maintain, strengthen and use your support system of family and friends.
    Don’t feel guilty for taking time to care for yourself and other members of your family.

A mother, whose child has received multiple diagnoses over several years, has had to repeatedly rely on her personal support system. After his most recent Autism diagnosis, she said, “I had every emotion you could think [of]. That’s when I really had to rely on family and of course, [my partner] the most! Having that support so you’re not in it alone makes a world of difference!!!”

Parents of children with special needs must learn to accept and ask for help from family and friends. Keep your personal relationships strong. Take care of yourself. Take care of your families. Remember that a loving and healthy home, family and caregivers are most important for your child. Never feel guilty for prioritizing that over offering every opportunity, service or experience available for your child with special needs. Find the right balance for your family.

“I can’t try every new therapy and every new medication I read about. I can’t be twenty-two places at the same time. I can’t neglect myself and those I love to care for my son. [He] is not the only member of this family, and I have to remind myself often that we cannot let everything revolve around him all the time,” says the mom of a child with Autism.

3. Do find and create a team of professionals, specialists and experts in the area of your child’s concern.
    Don’t exclude yourself from the team of experts.

Search out a team that you feel comfortable with and will listen to you. It’s OK to find a different doctor, therapist, school, etc. that you feel works well with you and your child. But remember, perfection is very hard to find, so settle for a good fit. You most likely will need professionals in the medical community, at school, and in the community. Advocate for your child by making allies, not enemies. Find ways to work together with your team, not fighting against them.

Write down your questions and concerns. Bring them to appointments and meetings. Ask questions and seek out information and resources from your team. Write down notes or ask for handouts and copies because you’ll need to remember and refer to that information again. Follow through on important recommendations from your team.

Remember that YOU are THE expert on your child. Don’t forget the importance of your input! No one knows your child like you do. During her first meeting with her son’s school, one mom realized, “Maybe I did know a thing or two that these experts didn’t. After all, they didn’t know that [he] needs help blocking out environmental stimulation before he can focus on a task, or that he will never, ever respond to a loud voice. They didn’t know that music is always the best way to calm him or that he will move heaven and earth for Nacho Cheese Doritos.”

Realize that you will be unofficially appointed as team manager and communications specialist between all team members. Take this job seriously. Learn to gather, organize and share important information from the doctors, to the therapists, to your child’s teachers and anyone else.

4. Do create a realistic perspective of your child’s abilities.
    Don’t let your child’s struggles or diagnosis become their identity.

Children with special needs will be different from their peers. After educating yourself and consulting with your team of experts, begin to create realistic expectations for your child. Her condition may always create significant differences from others for the rest of her life. An insightful mother realized that she needed to be mindful of the way she talked to her daughter about her struggles. “I knew that how I framed [her difficulties] would be how she would frame it. She wasn’t bad or broken, her brain just had a different operating system, like computers. How I spoke to her about it would become her inner voice.”

Your child’s condition or diagnosis will absolutely define who they become, but don’t let that be the only defining aspect of their identity. I’ve met nonverbal children who are wheelchair-bound that can brighten the entire mood in a roomful of people with one smile. I’ve met children who haven’t learned to make friends with their classmates, but can explain in detail about differences in a large range of dinosaur species. A little friend in my neighborhood struggles to sit still and listen to teachers, but she has no reservations in calling any person her friend and holding their hand as they walk together.

One mom tells, “[My daughter] still occasionally says, ‘I hate all my issues!’ but I often remind her that although she has a few struggles, she’s so much more than that. She’ll eventually learn coping skills to deal with her [condition], but she’s already mastered things that are really important in life like kindness, hard work, enthusiasm for learning, and compassion.”

5. Do expect your child to achieve.
    Don’t forget to celebrate even the smallest of achievements!

“Learning does not come as easily for [my son], and my tendency is to swoop in and make things easier for him, but the only way [he] is ever going to master a skill is if I don’t keep doing it for him. I firmly believe that EVERY child is capable of learning and growth, but we’ve got to stop making excuses for them. Have realistic expectations, but make sure you have expectations,” says one mom. Yes! Progress is possible with hard work. Give your child the opportunity to work hard with the right expectations and support. Your team can help you and your child prioritize and set realistic goals to strive for.

Celebrate even the smallest of achievements! “We celebrate taking one tiny bite of meat or the fact that he’ll not lose his mind over something on his hands… We celebrate all the small things that are an everyday normal to some.” Involve those who know your child well in those celebrations. Not everyone will recognize what big achievements these small steps really are, so share them with your support systems and your child’s team.

6. Do live in the moment.
    Don’t forget to laugh!

A wise mother of a daughter with Cerebral Palsy says, “Live in the moment—good or bad—and [don’t] let the future dominate your thoughts. Obviously, make necessary plans, etc., but don’t let worry about future hurdles or joy about imagined future success take up much of your time. It has taken me several years, but I have learned that by living in each moment of each day, I can enjoy the surprising pleasures of this crazy adventure without borrowing trouble from my future self.”

Another mom who often shares funny stories of her son with Autism says, “Humor has saved my life. Laughter changes everything when you find yourself in a high-stress environment, and it has been my saving grace. Cultivate the ability to find humor in the unexpected, and your life will be so much easier!” (I’ve shared many thoughts from this mom, who recently wrote a similar article about receiving her son’s diagnosis of Autism on my blog here.)

Yes, this journey of parenting a special needs child will be exhausting, overwhelming and full of sadness and tears. But, make plenty of room for joy and laughter and fulfillment with your child! Again, I remind you… The child you love is counting on you! You can do this!

 

See Tera talk about what to do when your child gets a special needs diagnosis with FOX 13 The Place here.

Autism: Now What? Six Things I Wish I had Known When My Son was First Diagnosed with Autism

By Katie Wahlquist

“Probability of Autism Spectrum Disorder: extremely likely. Level: very severe.” Those were the words that jumped off the paper when I was handed the testing results of my then-two-year-old son Adam’s visit with the pediatric psychologist. Was I surprised? Not even a little bit. Adam was born almost three months early, so we were always operating on a different time schedule when it came to developmental milestones, but when his second birthday came and went without so much as an attempt at speech, not to mention his lack of eye contact, unusual behaviors that could not be written off as “the terrible twos,” and his extreme obsessive tendencies, it was pretty clear that we were dealing with something more than a developmental delay. So was I surprised? Of course not. But was I ready for that diagnosis? Of course not!

I didn’t realize it then, but that was my first in what was soon to be many lessons on parenting a special needs child: my life was now all about contrasts. Like Charles Dickens wrote, “It was the best of the times, it was the worst of times,” that reality was now my everyday life! It’s frustration and joy and fatigue and elation and heartache and love and annoyance and humility and despair and hope and guilt…all at the same time and all before 10:00 in the morning!

Adam’s twelve years old now, and this journey just keeps throwing new curve balls my way. Adam still hasn’t spoken a single word, he’s still not potty-trained, and his behaviors are overwhelming to deal with on a good day, but I have learned a few basic principles over the past ten years that have helped me to stay positive and move forward with joy. Please note that in no way do I consider myself to be a superior parent to any other parent. I cringe when people say things to me like, “Oh, you must be such a special person to have been blessed with such a special child.” I know that these comments are almost always given with love, but I don’t think there’s some special place in heaven reserved only for special needs parents. These truths apply to ALL parents, whether you have a special needs child in your life or not. Also, I want to stress that I am not a professional therapist or medical practitioner; I’m just a mom with a pretty amazing kid.
Which brings me to my first point…

1. You are the expert. Period. Now, don’t get me wrong: raising and caring for Adam is a team effort. We love the teachers, doctors, and therapists we work with. They have become part of our family, and I believe very strongly that becoming allies instead of enemies with the people who are treating and caring for your child is CRUCIAL to your child’s success. Adam’s teachers and therapists love him, and I know that their goals and my goals for Adam are the same, but at the end of the day, no one knows your child like you do. No one. And don’t doubt it. I remember walking into my first IEP meeting (to create a specialized education plan for his school), being surrounded by people who (I thought) knew everything there was to know about Autism (spoiler alert: no one does). I listened to their ideas and suggestions in awe, watched as they started writing down goals and the methods they would use to achieve them. I remember thinking that I really didn’t need to be there, it was just a formality. And then, one of those wonderful teachers looked right at me and said, “What do you think would work, Mom?” They wanted my opinion? Wow! All of a sudden, I realized that I had the power (and responsibility) to shape what Adam’s education was going to look like, and maybe I did know a thing or two that these experts didn’t. After all, they didn’t know that Adam needs help blocking out environmental stimulation before he can focus on a task, or that he will never, ever respond to a loud voice. They didn’t know that music is always the best way to calm him or that he will move heaven and earth for Nacho Cheese Doritos.

(By the way, this same principle applies to other areas of your child’s care as well. I could tell you a really sad story about how Adam broke his jaw last year because he was obsessively grinding his teeth together and we didn’t know about it for two weeks because I didn’t trust my gut feeling that something was wrong with his mouth, more than I trusted the multiple doctors who could not find anything wrong with Adam during those two weeks. I could tell you that story, but I won’t. *cough cough*)

So listen to your team of experts; love them, show your appreciation to them, be open to their suggestions, come up with a plan together. But understand that YOU get to have the final say when it comes to your child.

2. Educate yourself like crazy! Now that we’ve established that parents are the experts, go out of your way to become one. Understanding why Adam has certain difficult behaviors has made all the difference in the world as I try to cope with them. Adam does a kabillion things that drive me BONKERS (like smelling every person we meet, crawling into the tiniest spaces and refusing to come out, licking the walls of every single room in our house, freaking out when he sees people wearing socks, etc.), but when I started learning about the reasons why Adam might be acting in these ways and the science behind it, suddenly it was more fascinating to me than it was annoying. I’m also better able to make informed decisions when I understand what’s happening, especially if I combine my knowledge with my gut-feelings (see point number one). Do I screw up those decisions? Oh yeah, all the time. It’s going to happen, and happen a lot, but when I’m putting in the work and trying my best, I have much less guilt when it does.

A NOTE ABOUT EDUCATING YOURSELF: This may come as a shock to you, but not everything you read or hear is true. Misinformation is rampant in the special needs world, so make sure that you are looking to trusted resources and professionals and not letting yourself get caught up in promises, claims, or therapies that will accomplish nothing but feed you a lot of false hope. Do your homework and know what is legit and what is not.

3. Chill out. Guess what, super mom? You’re not “Supermom” (See what I did there?). Let’s just get over that right now. Being a parent is hard work, and when you throw in the stress of caring for a child with a disability, it’s downright overwhelming. You absolutely cannot do it all, and that’s OK. In my perfect world, I would sit in my spotless house on the freshly vacuumed carpet with Adam and spend 4 hours every day working on communication skills on his iPad. We would build an impressive core vocabulary, all while dinner (gluten-free, of course) cooked on the stove. In reality, I spend those four hours picking up the trail of Cheerios Adam leaves all over the house, while trying to figure out what I can get him to eat before giving up and handing him a bag of Cheetos. And that’s OK. I can’t try every new therapy and every new medication I read about. I can’t be twenty-two places at the same time. I can’t neglect myself and those I love to care for my son. Adam is not the only member of this family, and I have to remind myself often that we cannot let everything revolve around him all the time. That might mean that I’m not going to enroll him in the amazing charter school in the next county, because I have a daughter who needs her mom to be available to take her to piano lessons or discuss the drama of high school relationships, and I can’t do that if I’m in the car for two hours with Adam every day. That might mean that I need to accept the offers of help from family and friends and not feel bad when I tell the PTA President that I can’t be in charge of the Book Fair. Focus on the big picture, do what you can, ask for help, and let go of the guilt!

4. Flip your perspective. I think I’m a naturally selfish person, because most of the time, I tend to view Adam’s Autism in terms of how it affects me (how I have to adjust my schedule, how he dictates what I am able to do, how I have to adapt just about everything in my life for him) but I’ve really tried to consciously consider how it affects him. How terribly frustrating it must be to not have the ability to express your thoughts, to have little control over your day-to-day activities, and to be completely overwhelmed by and unable to process the sights, sounds, and emotions in your life. It breaks my heart for him! BUT, despite all of that, I can think of no one who is more full of life, love, and joy than Adam! Adam’s not stressed out by the projects on his to-do list, he’s focusing on how the wind feels when it blows through his hair. He doesn’t care if he has the latest iPhone, he’s just as happy with a couple of helium filled balloons. The world is new and different every day for me when I try to see it through Adam’s eyes; it’s brighter, more complex, and nothing is ever mundane or ordinary, and that perspective is one to be envied and celebrated! There are times when it feels like I’m viewing the world while standing on my head: everything is upside down, it’s dizzying and confusing, and I feel like I might throw up, but oh, how beautiful the world can be when I see things in a different way!

5. Expect your child to achieve. I get it. You have this fragile little person and you just want to take care of him and do everything for him because you love him so much, right? Wrong! I found myself in this trap early in Adam’s diagnosis (and still find myself in sometimes now), but luckily for me, I came across a remarkable special needs mom who taught me that even though you feel like you should do more for your special needs child, you actually need to do less. Learning does not come as easily for Adam, and my tendency is to swoop in and make things easier for him, but the only way Adam is ever going to master a skill is if I don’t keep doing it for him. Crazy, right? Do I want Adam to learn to buckle his own seat belt? Get himself dressed? Write his name? Then I better back off and let him do it. I can’t even count the times that Adam has surprised me by whipping out some skill that I was sure he couldn’t do without my help. With Adam, there has always been a gap between what he could do, and what he would do (I laugh every time I hear an adaptive physical education teacher tell me that Adam can’t throw a ball; he sure doesn’t have any trouble throwing other items like shoes, shampoo bottles, or bagels), but when someone comes in and actually expects Adam to achieve, he almost always rises to the occasion. I firmly believe that EVERY child is capable of learning and growth, but we’ve got to stop making excuses for them. Have realistic expectations, but make sure you have expectations.

6. Laugh. All of the time. I saved this one for last because I think it’s the most important. Humor has saved my life. Autism is hard, but Autism is funny! When my next door neighbor calls to tell me that she just found Adam lying in her bed, I have to laugh (and also apologize and install a high-tech security system). When I watch Adam eat a piece of licorice like it is an ear of corn, or pick up the piles of random household objects that he very artistically arranges on my kitchen floor, what else can I do? I laugh! When the principal calls me to say that Adam is lying in the sun and won’t come in from recess, I wish her luck and I laugh! When Adam’s teachers send me pictures of him wearing hairnets over his face, or I notice that Adam has unscrewed all of the lightbulbs from the living room lamps and laid them neatly by the fireplace, I laugh! When I discover bags of Cheerios stashed in our heating vents, or watch him calmly remove ice cubes from the freezer and put them inside my pillowcase, I laugh! When he wears snow boots to school every single day of the year, puts on a life jacket and lies down on the front lawn, removes all of the canned food labels in the pantry, what do you think I do? I could go on, but I think you see my point. Laughter changes everything when you find yourself in a high-stress environment, and it has been my saving grace. Cultivate the ability to find humor in the unexpected, and your life will be so much easier!

Autism: Now What?There are so many other lessons I’ve learned from this boy, and I’m sure I will continue to learn from him for the rest of my life. I will never sugarcoat it and tell you that it’s easy; I am overwhelmed every single day. I often think to myself, “I want off of this crazy roller coaster!” If I could take Autism away from Adam, I would do it in a second! But would I ever want to change who I’ve become because of Adam? No way! How else could I have learned what it means to love unconditionally so effectively? How else could I have taught that to my daughter? How else could I have seen my husband’s quiet strength so clearly? How else could I have learned to rely so heavily on my faith? How could I not be grateful for the tremendous growth and love that have come into my life because of Adam? So please, never feel sorry for me because of the demands of taking care of Adam; I think when it comes right down to it, I’m going to be just fine.

But I swear, if I have to clean up any more chocolate lick marks on my wall…

 

Katie Wahlquist is a wife, a mom and a lover of homemade cinnamon rolls. She lives with her husband and two children in Utah.