Bedtime is probably the one time when all parents can agree the struggle is real. For some reason, kids’ energy levels seem to peak when all you want is for them to GO TO SLEEP already. You may have searched for tricks or tips to help them take it down a notch, at which point you probably discovered the “burrito wrap” move. Okay, great, but what if your kiddo hated swaddling as a baby and still doesn’t like it? Hannah Sylcox, COTA, who went viral for her tips for calming kids at bedtime, recently shared three additional ones worth trying out—no burrito necessary.
For this bedtime activity, you’ll hold your kiddo in your arms while sitting on the ground and rock back and forth. According to Sylcox, this move provides full-body deep-pressure input; Communikids explains this as “providing proprioceptive (muscle/joint awareness) information to the whole body, which has a calming and organizing effect on the central nervous system.” As a bonus, Sylcox says it’s a chance to cuddle with your kiddo, and we’ll take more of that all day, any day.
2. Blanket Swinging
This move provides what Sylcox calls “a balance of calming proprioceptive and vestibular input while avoiding complete enclosure.” What’s vestibular input? Something that stimulates the vestibular system, a network of parts in the inner ear that help our sense of balance and movement. Swinging in a blanket is a particular form of vestibular input known as rhythmic linear input, and has a calming effect on kids dealing with high arousal protocol (a.k.a. acting crazy before bedtime), according to San Diego Occupational Therapy.
3. Rowing and Swaying
Sylcox points out that this movement can “ help your child reset when they are overstimulated, overwhelmed, or [need help to] manage their tantrums.” To try swaying, grab your kiddo’s hands and move back and forth slowly while standing arm’s length apart. Rowing looks similar, except you are sitting cross-legged while holding hands with your toddler.
If you’ve tried these tips and are looking for more bedtime activities, check out our favorite sensory activities to use with kids before bedtime. After all, anything that’ll make the daily process of getting kids ready for Dreamland easier is worth a shot.
Five years ago I became a teacher; five years ago I also became the mother to a son in heaven. On August 12th, 2016, I came home from my first new teacher workday. It was exhilarating and exciting, and for the first time in a long time, I knew I was exactly where I should be. I had no idea that a few short hours later, I’d find myself in the hospital in preterm labor with our first child. That same day, we lost our son Jaxon at only 21 weeks.
I found myself wondering how on earth I was going to go back into that classroom and teach a room full of 28 kids when I had just lost my own. Nevertheless, I did it only four short days later. And now, looking back, I know that that choice completely changed my life. I knew that was exactly where I was meant to be.
Fast forward to April 2, 2017, I found myself in the same space. In preterm labor, this time with twin boys. That day, we lost our boys Everett and Bryant. Again, nearly immediately after, I threw myself back into my work. Now here we were, struggling with what to do next. We wanted to be parents more than anything, and we knew we had so much love to give. So in January 2018, after 7 long months of bed rest, we welcomed our angel on earth, Maddox. And we were smitten.
Being a teacher is often a double-edged sword. You’re educated on child development just enough to be hypercritical of not only your work but also the work within your own home, with your own kids. Maddox was a spitfire from the day he was born. So independent, but so kind-hearted and eager to explore the world. I can also tell you down to the minute when I realized that something wasn’t right.
I was sitting in the viewing area at his very first swim lesson. I had convinced my husband to get in the pool with him (more like I lost at rock, paper, scissors), so I struck up a conversation with the mom sitting next to me. Her daughter was in Maddox’s class, and we had discovered that they were only a few days apart. Maddox nearly doubled her in size, but she had something Maddox didn’t; eye contact, pointing, talking to her mom, waving, blowing kisses. She had effortless interaction, and meaningful engagement. There we sat behind the glass, her receiving waves and kisses, and me desperately trying to have Maddox even look at me.
That’s when I knew.
We are blessed with the most incredible pediatrician, turned family friend, and within minutes of this realization, I had sent her a text message.
“I think Maddox has autism.”
Although no one around me was on board at the time, they supported me, and they listened, and I could never put into words how grateful I am for that.
The following month, Maddox turned 18 months old. We had speech evaluations, occupational therapy evaluations, and physical therapy evaluations. It was determined that my 18-month-old was currently communicating at the level of a 3-to-6-month-old. His repetition had also worried them to the point of needing weekly occupational therapy sessions, as well as speech.
The next few months were a blur, I never stopped. I googled, I tried finding Facebook groups, anything I could do to find even a glimmer of hope. And that’s where this journey of autism becomes lonely. Before this, I had no idea how broad this spectrum truly is. No two journeys are the same, and there is no one-size-fits-all description.
This past winter, we had Maddox’s first preschool evaluation to have his IEP written. Even though I had gone through the diagnosis and all the therapies, and all of the sleepless nights I spent worrying, this was the hardest for me.
For the first time, I was on the other side of the table.
I suddenly found myself trying to flip the switch from teacher to mom. I wasn’t advocating for accommodations for my students anymore, I was doing it for my own child. And although I had always had the greatest empathy for the parents of my IEP students, this was different. Now, we had something even greater in common. In that moment, I came to understand them better than ever. I understood why they were so passionate, sometimes to a fault, about making their child’s educational experience the best it could possibly be.
I can’t tell you how scary it is to send your 3-year old into a building with adults that you don’t know and who don’t know you. But I can tell you that it’s even scarier when your child can’t talk to you about their day, and they can’t communicate with you in the same way that typically occurs at their age.
Maddox’s diagnosis may have turned our world upside down, but now we fight every single day to turn the world right-side-up for him.
And although I had grown used to being the teacher at that table, I was now fighting to become comfortable and aware of my new place, on the other side of the table.
My name is Jordan Lamping and I am the mother of an amazing three year old son named Maddox, who was diagnosed with autism just over a year ago. I'm also a teacher, and the creator of The Other Side of the Table blog.
Whether we are reading to them or with them, books that put kids with disabilities at the center of the storyline benefit all children. For kids who have a disability, seeing themselves represented is validating and empowering. And children who do not have a disability can gain insight and empathy into the world of someone who does.
When it comes to children’s books, inclusion matters, and no one knows that better than parents of a child with a disability who has spent hours combing shelves trying to find a book that relates to their child. Many of the books on this list were written by parents of children with disabilities who wanted to see their children, and children like them, as the hero of the story. Scroll on for 11 great reads.
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When mother and author Adiba Nelson struggled to find a single children's book that showed a Black child with disabilities, she wrote one herself. Inspired by Nelson's desire for her child, who has cerebral palsy, to see herself joyfully in a book and the world around her, Adiba wrote Meet Clarabelle Blue to do just that. Follow Clarabelle through her day and learn how she is just like you—she loves to giggle, she has to brush her teeth, she loves to laugh—just like all kids. An important book for children of all abilities to read to gain insight, compassion, and the importance of representation. Also available in Spanish.
Written by the parent of a young child with autism, this book follows Landon, a boy who loves to play with his friends but struggles to communicate with others. Not only does it help show any kiddos on the spectrum that they're not alone, but it also educates all readers on some of the traits and behaviors linked to ASD. Above all, it serves as a reminder that each of us is unique and deserving of love and friendship.
Inspired by their son, husband and wife co-authors Jamiyl and Tracy-Ann Samuels wrote The Amazing Sensational Kids series to empower children with autism as well as create empathy for those who have children on the spectrum in their life. All their books are fantastic, but The Sensationally Super Sandy stands out. Sandy has a big brother who doesn’t always speak or play with her, but as her parents explain to her what having autism means, Sandy learns how important it is to be kind when someone is different. And Sandy takes that to heart on the school playground.
Both main characters are relatable and loveable. The book gives perspective on what it can feel like to be the sibling of someone with autism and provides a very clear explanation of what autism is for children of any age. By Jamiyl Samuels and Tracy-Ann Samuels, illustrated by Nidhom.
Children on the autism spectrum frequently have sensory issues, including disliking certain textures. Such is the case with our little hero, Holly, who loves science and doing experiments. But she is upset when she finds out the next experiment is going to be slime, something she strongly dislikes because it is too sticky! Together Holly, her teacher and her parents find a solution.
Ages: 4-8.
By Jen Malia, illustrated by Joanne Lew-Vriethoff.
Beautifully written by a parent with a child who has ADHD and Proprioceptive Sensory Disorder, this book is designed to empower sensory seekers and educate both sensory seekers and those around them with strategies that will help with self-regulation. But don’t just take our word for it, take their son’s: “This book gives me strategies to calm down,” he says. Using straightforward strategies and relatable language, this book is based on years of first-hand experience and Occupational Therapy. For any age child with ADHD, an SPD (Sensory Processing Disorder), and their families. Written by Christia DeShields, illustrated by Marissa Nelson.
From Francesca Cavello, co-author of Goodnight Stories for Rebel Girls, this beautifully illustrated book tells the story of Paralympian Tatanya McFadden. Born in Russia with spina bifida, Tatanya lived the first six years of her life in an orphanage, where she learned to walk on her hands. After being adopted by her moms and moving to the US, McFadden began wheelchair racing at the age of just eight years old. The images by Luis San Vicente invoke the astounding speed and movement of this Paralympic star.
With a little boy named Xander as the narrator, the book explains all about cerebral palsy, including causes, types, and how it affects both him and his friends with cerebral palsy. This book teaches children about cerebral palsy and provides a representation of a strong, positive character for children with cerebral palsy to relate to and be proud of. Best for children ages 4-8 but is suitable for all ages. Written by Lori Leigh Yarborough and illustrated by Roksana Oslizlo.
This graphic novel geared toward children 8-12 not only made the New York Times bestseller list, it also won a Newbery Honor award. Based on Cece Bell’s own life as the only deaf child in a school of hearing children, Bell wore a hearing aid which allowed her to hear a little more than just the lesson plans. This humorous story reminds children that being different is good and that those differences are actually what become your superpowers. El Deafo is also now an animated series. Written and illustrated by Cece Bell.
This inclusive book for elementary-aged kids (ages 7-9) features multiple heroes who are on the search for Marshmallow, the classroom bunny. When Marshmallow goes missing, two students find him; one with a visual impairment and the other who has autism. Once found, the bunny is comforted by a student with down syndrome. By Kathryn Lynn Seifert with illustrations by Ann Murray and Jean Weir.
Zulay and her three best friends love the first grade. Zulay is blind, but she loves to do what all the other kids do, and study what they study. When the school’s Field Day comes along, Zulay announces she wants to run a race. With the help of her friends and a teacher, Zulay accomplishes her goal. The book, for ages 4-8, includes the Braille alphabet. Written by Cari Best and illustrated by Vanessa Brantley-Newton.
Albert Whitman & Company
We Want to Go to School!: The Fight for Disability Rights
Before 1971, millions of children in the United States were not allowed in public schools. But in 1971, seven kids and their families stood up for equal education and equal rights and went to court to fight for it. Co-authored by Janine Leffler and her mother, children’s book author and illustrator Maryann Cocca-Leffler, this book tells the story of Mills v. Board of Education of the District of Columbia, which changed the course of disability education. Maryann has written a series of books based on her daughter Janine, who was born with cerebral palsy, but this is the first time they have written a book together.
This book will teach children ages 5-9, and all children and their grown-ups, about a landmark case that is not well-known. It is especially impactful for children to read at school to understand the significance of the law, the activists who fought for it, and both the history and future of disability education in the United States.
Do you ever notice how social media can mess with our understanding of our individual children’s developmental paths? We often start to question where they are in their development compared to everyone else’s kids. And we then allow this comparison to determine our feelings of parental success—or failure.
How Social Media Can Negatively Affect Us
First, let’s look at how social media can affect us as individuals in general. Social media has been shown in several studies to be correlated to a decrease in self-esteem and an increase in depressive symptoms. Psychologist Melissa G. Hunt published an article in the December 2018 issue of the Journal of Social and Clinical Psychology that even went so far as to say that there is a causal link between social media use and “decreased well-being.” Causal link!
This effect is similar to how we feel after looking at fashion and beauty magazines where we compare ourselves to a photoshopped (read: not possible) “ideal.” I’ve always wondered how supermodels feel seeing themselves in photos looking, well, not like they actually look. It has got to be bizarre. I guess at least they know the truth while the rest of us look on in awe, putting ourselves down.
Social media is no different. People post the best events, vacations, moments and often don’t share the behind-the-scenes reality. Can their lives really be THAT perfect? The definitive answer is a resounding NO WAY!
No one’s life is as perfect as they make it seem. And we know that, really. We know that there are 20+ photos taken before “the one” is captured for someone’s fashion blog. We know that props are purchased and arranged “just so” for someone’s food styling post. We know that bordering the picturesque square image posted to Instagram there are piles of laundry and dirty dishes. But it still can eat at us.
How Social Media Can Negatively Affect Us—as Parents
Unfortunately, our opinions of our children are not spared when it comes to social media comparisons. It usually begins innocuously enough: we post pictures of our beautiful children, share their growth and share our pride—and our friends and connections do the same.
Everyone is sharing the positives, which should be great, right? Well, on the one hand, it is beautiful. Boast! Be proud! Applaud your little ones! But, the other hand holds the negative reality.
We see our friends’ children sitting, crawling, walking, talking, running, singing, sleeping, and toilet training sooner than ours. We then launch into hours-long google searches of our specific comparison and concern, which prompts us to believe that our child’s supposed delay is absolutely, without a doubt, due to our excessive consumption of pizza bagels in high school.
And then the judgment turns inward. We feel that somehow our child’s natural timeline is a reflection of our parenting. My child’s path means I am a success or a failure. I wish we parents had that much power, but the reality is, we don’t.
Remember the age-old “nature vs. nurture” debate? Well, it continues, but I feel that when it comes to general development, nature is quite strong. Personally, I never knew how little control I could have over another human being until I had my children. A serious lesson in humility.
Social Media Is Not All Bad
So, it looks like I just wrote an *ahem* social media article that describes *ahem* social media as a mental health monster. I guess I kind of did, but here’s the other side of the coin: I also don’t think it’s bad all the time or to everyone.
Social media is ubiquitous in this day and age. Kids from one to 92 (Nat King Cole, anyone?) use the internet on the daily. In a lot of ways, it’s wonderful. Social media has enabled the world to become a smaller place in which living thousands of miles from family doesn’t have to mean only hearing their voice occasionally. Now you can see their faces on their pages or even use video calling apps to have as close to in-person conversations as possible!
If your family is military and you’ve moved a lot, I am sure you can attest to the beauty of the internet and social media. I personally love that my children know their grandparents in the United Kingdom so well through social media that when we visit them, they don’t miss a beat engaging with them.
With social media, you learn about how your friends are doing and even if you aren’t in person to be with them through life’s milestones, you are there digitally. That can be priceless.
You will have your own opinions about social media and its effect on your life. Whatever your current relationship with the virtual world, I suggest following these five steps to maintain your positive sense of self and your well-deserved pride in yourself and your perfect-as-they-are children:
1. Do a surface-level clean of your feed.
If you love seeing your best friend’s posts because her kids are a hoot, keep checking them out. But, if you compare yourself or your child to another friend’s posts, unfollow them (you don’t have to “unfriend” to not see their content!).
2. Find pages or groups that lift you up or that show the real side of life, like this one!
I will post the good, the bad and all the in-between, because I know we all experience it and I want you to know you’re not alone. Full disclosure: I was starting to get on myself for that danged chipped toe polish, now clearly displayed in both picture and video form!…but instead of envying those mamas that get regular pedis (I can still hope to be one someday), I will simply celebrate when I choose to do something about it, which may be tomorrow or may be next week… or may be I’ll wait until it grows out and I can start fresh.
3. Remember the mantra: “Their Own Path at Their Own Pace”
Follow whomever you want to follow online, but remind yourself that every child is on their own path. Some will walk at 10 months—super exciting of course—but may not show any more athletic prowess than that. Some will start to speak around then—music to a mama’s ears—but may be so shy they only speak in the home. Some do everything late but go on to be a world leader or famous singer or Olympic athlete. You never know! And honestly, it seems like most children’s skills are caught up in one way or another by the time they start school.
So remember: Your child is special and your child is perfect for himself or for herself. He or she is following their own path at their own pace. The sooner we can embrace that, which is hard of course, the sooner we can see our child as they are and love them all the more.
4. Do a deep clean.
If you’ve done all of the above, then maybe it really is time for the big-time, deep-cleaning social media purge. Go through your connections and remove anyone who is bringing you down. I know everyone is on a #KonMari kick in their homes and why not online too? If someone is not “sparking joy,” then good riddance!
Ensure your main feeds are chock full of sources of happiness. After all, you are an amazing mama and you deserve it.
5. If needed, have your child assessed.
If you are honest with yourself that your concern about your child’s development is deeper than social media comparisons, then please, have your children assessed! (And stop Googling!) Most big cities have programs in place, that are often free or low cost, to evaluate your child for speech, developmental delays, occupational therapy and behavioral therapy needs.
Or, you could do an at-home assessment. I personally like to use the Ages and Stages Questionnaire (ASQ3) as a gauge of how my children doing in terms of their communication, fine motor, gross motor, problem-solving and personal-emotional development. Early intervention often leads to better long-term outcomes.
I am a mom to two young kids, a licensed psychotherapist, and a children's book author. My passion is to help and empower moms and children to understand themselves better, navigate challenge confidently, and live the life they want. Visit me at ChristinaFurnival.com
The Struggle Is Real. It’s a phrase I used all the time pre-pandemic. Didn’t drink enough water today? The struggle is real. Couldn’t find the right jeans? The struggle is real. Twins throwing a screaming meltdown in Ralphs? THE STRUGGLE IS REAL.
Ah, the bliss of pre-2020 life.
I’m a mom to 5 1/2-year-old boy/girl twins. I could go on and on about my amazing daughter, but this is about my son. Why? Not only am I a twin mom, but I’m a mom of a child with special needs.
We noticed early on that my son was delayed. At first, we thought it was because my daughter was advanced, but after an assessment with our local Regional Center, we received the news that he needed support. I went through the first year devastated. No one likes to hear that something is wrong with their child, but I was hearing it repeatedly. Each time it was a kick in the gut. Here, the struggle was real.
As we went through Regional Center and then through our local school district it became clear that my son had a speech impairment and needed help with motor skills. It took a year but I finally found the perfect speech therapist and he was thriving in occupational therapy. My husband and I found the charter school that was the right fit for our family and we were set. The twins were off to TK in August of 2020 (or so we thought) and we could finally have a bit of breathing room.
I look back at that time now and laugh. Not funny haha, but more of how naive I was back then. Originally the idea of a 2-week stint at home without preschool or therapy sounded lovely. We could connect as a family, and then 2 weeks turned into a year, and here we are.
Not only is the struggle real because we are living during a once-in-a-lifetime pandemic, but my child (along with millions of others with special needs) stopped receiving hands-on in-person services. Once again I was gutted. He was making so much progress in therapy and now he had to try to get the same benefits via zoom.
While his therapists did the best they could, it was not easy to get him to adjust. Not only did he adore seeing his therapists in person, but it was solo time for me and him. A way for us to bond and connect without his twin sister and it was swiftly taken away.
Twice a week I logged us on and we somehow managed to make it through a speech or an OT zoom session while his kind and patient therapist tried to help guide me in translating their techniques into a home setting. The struggle was real.
Instantly I was worried. He was starting a new school and I knew they were launching virtually. I worried about him being understood by his teacher and classmates. Would he give the same sort of resistance to his therapists at the school? How could my husband and I manage this while both working full time? So many questions.
The struggle, I thought, would be real.
We logged on to zoom on August 24th for their 1st day of school. Did I mention that we decided to send our kids to a brand new charter school? That’s right, in the midst of the madness of 2020, we instantly fell in love with CWC West Valley.
I know you’re going to ask me, “But Kristina, why would you send your children to a brand new school in its founding year? Wasn’t 2020 hard enough?”. Hear me out. CWC is a part of a network of charters and already had existing schools in place across the LA region. The difference with CWC’s approach is through constructivism, the understanding that children don’t come to school as empty vessels, but with ideas and experiences already in place. Also, here’s the kicker, they focused on social-emotional learning. Yes, you read that right. It’s actually in their learning model. My children are learning mindfulness, diversity and inclusion work and more. And, did I mention project-based learning? Ok I digress, back to my point.
Since that 1st day of what we affectionately call zoom school, I realize that when you find the right environment and community for your family, it doesn’t necessarily have to be a struggle.
I attended my first IEP meeting shortly after school started and my voice was heard. Read that again. My voice was heard. It was a novel concept for me since I spent so much of my time fighting for the services that my son needed to thrive. They validated my concerns and agreed to work with me instead of just sharing their opinions of what they think is best. It was mind-blowing.
Suddenly, sessions with his new speech and occupational therapist weren’t such a struggle. He actually preferred to log on without me. I saw a change in him and for a minute I breathed a sigh of relief. Not only was he actually improving in speech, but he was enjoying it.
In a year of isolation, I found community. There were other moms like me. Moms who spent so much of their child’s early years in therapy sessions, in IEPs, trying to advocate for their kid. It instantly felt like we were a part of a secret club. A club that you don’t necessarily want to be a part of, but one that pushes you to the limits you didn’t know existed within you.
The Unicorns. It’s CWC West Valley’s mascot. I mean, of course, 5 & 6-year-olds picked a unicorn as their mascot. This place? It’s magical. We found community. We found joy. We found the ability to dare I say thrive in the midst of a chaotic and hectic year. For once, the struggle wasn’t real.
I am a twin mom who is married to an adorable nerdy husband and still loves Justin Timberlake (*NSYNC forever). When I'm not momming it up you can find me doing marketing for social impact brands, reading the latest celebrity gossip or spending quality time with family and friends.
I remember it like it was yesterday. I was over-exhausted. Overwhelmed. Underpaid. (I kid). Vivi was teething and Whitman was out of control. We were waiting for occupational therapy. I was bouncing Vivi on my hip and chasing Whit. Our stroller was full of Panera bags, cups, and cookies because we had no time between school that was on the second floor and OT which was on the first floor.
Whitman wanted a candy bar and was doing his nonverbal grunts and points at the vending machine. I was trying to coax Whitman away from the vending machine with a sugar cookie and brownie. I was failing at both things. Then a woman with messed up hair, a walker, and reeking of B.O. and cigarettes walked up to me and she said it. I
knew that one day I would be faced with adversity because of Whitman’s lack of language. I thought my first time would be at Target or Wal-Mart. But I never pictured it would happen in the rehab facility. The woman said: “You know he’s a R*** right?! And why in the hell would you bring another into the world?!” She pointed at Vivi. I stood stunned. I didn’t know what to say and I could feel the tears streaming down my face. Thankfully, Whit’s occupational therapist came out and the situation was defused. I told her what happen, pointed out who the woman was from the hallway, then drove home a sobbing mess from therapy that day. I questioned every move I had made as a mom. Was it my fault?! Should we not have had Vivi?! Am I not handling this the way I should be handling this?!
In therapy, Whit’s OT reminded me that Whit wasn’t any of what that woman called him. We have had the IQ tests. Whitman is reluctant to show you what he knows, but trust her, he knows. I saw the woman the following week and felt sick when I did. Her daughter walked up to me and apologized for her mom’s behavior—she had seen it all while she was trying to check her mom in and was mortified. She didn’t make up an excuse for why her mom said it, she said just said how sorry she was. Then added that my kids are cute. It helped a little but the wound is still there two years later.
That word takes away your security. That word makes you feel things as a parent that you should never have to feel. It reminds you of what a cruel place this world is. It makes you wonder what kind of human takes out their anger on a child and his mother who are simply trying to get through the day. We need to stop the stigma that this word is ok. In the dawn of a new era in America’s history, we need to take away that word and replace it with inclusion. We need to teach our kids that being different is fine. That being mean isn’t. That even if the quiet kid in their class doesn’t say “Hi” back you still say “Hi.”
If you see a friend struggling, you help. We need to stop criticizing and blaming parents because their child has special needs. Whitman isn’t the way he is because I did anything. He’s programmed differently and as much as I grieve about that it’s not because he is who is. He’s the best human being. He is a walking miracle. It’s because the world isn’t ready for him and what he can offer. It’s a tad better but not there yet. We have to start teaching our kids to advocate for those who need it. Kindness starts in the home. Hate starts in the home. Letting the R-word fly like confetti starts in the home.
Instead of putting our prejudices that we were raised with, let’s make 2021 the year of kind. The year where rude terms are put to bed. Let’s make 2021 the year where we stop judging other mom’s for doing it a different way than you. Let’s be grateful for our upbringings because it made us the people that we are. The people that our children need us to be. Let’s help others no matter what, without blame, or judgment. Let’s just be decent human beings.
Can we please just make 2021 the year of a new beginning where we don’t have to worry about what society is going to say about our kiddos or us? I will never forget my first encounter with that word. That day fueled a fire in me to be kind. Even if I disagree with the person, we are all different we are all going to have different opinions, even if the person was rude to me earlier. I’m choosing to be a person that my kids would be proud of it and it starts with being kind to everyone.
We as special needs parents need to know that kind is our superpower. We need to be the example for re-educating society if we have any hope of eliminating the hurtful words. Let’s set the bar high this year for ourselves. Let’s get out there in the community and educate the people around us, let’s be kind in our education, and show grace to the broken system that got us here. Let’s move forward with pride that maybe we can be the generation that changes the world, but in order to change the world we have to start at home and in our communities. Baby steps.
Lindsey is a mom, wife, and blogger at The Althaus Life. She lives in Ohio with her husband and 2 children. Lindsey is grateful all things and to be able to chronicle her beautifully broken laugh til you cry cry until you laugh life.
Hearing a doctor or psychologist diagnose your child with a serious diagnosis can be a gut punch for a parent or caregiver. You will need to face your own feelings about the diagnosis, learn about the condition, and take action on behalf of your child.
Maybe your daughter is a late talker who doesn’t allow others to hug her. Maybe your son talks up a storm about Thomas the Tank Engine and can only go to sleep when every engine from the show is lined up in a precise order on his bed. Maybe your child doesn’t make eye contact or reply in a conversational way when you speak to them.
The American Academy of Pediatrics (AAP) recommends that parents who are concerned about their child’s development talk with their doctor. The AAP recommends screening all children for autism at the 18- and 24-month well-child visits.
The Initial Screening & Evaluation
Sometimes the initial screening process goes smoothly and results in a clear diagnosis. Julie and Kyle’s third and youngest child, Aldo, was only two when he was diagnosed with autism, and he qualified for early intervention, a program that offers developmental support to very young children. Julie described Aldo as sociable and charming at times, but he didn’t like to make eye contact and he didn’t seem very interested in other kids. She was concerned by his frequent meltdowns, which were caused by a flood of intense feelings, both physical and emotional. When she took him to be evaluated, the evaluators said his autism was as clear as day.
The evaluation process is not always that straightforward, though. For example, for children who have another major diagnosis, like deafness or cerebral palsy, indicators of autism are harder to recognize. In these cases, a parent might be told that their child’s behavior is due to a diagnosis that is already known.
That is what happened with Julie and Kyle’s second child, Tommy, who is legally blind. When he was in preschool, he was having such violent meltdowns that he had been asked to leave two schools. He didn’t like to be away from home, and it showed.
“His relationship with me and his dad and older sister was wonderful, but anybody else, he was like, ‘burn it all down.’” She knew in her gut something more than his low vision was going on, but every doctor they consulted insisted that vision was the only issue.
“When they’re little,” she says, “you’re trying to figure out, is this their personality or is something wrong?”
Insurance Issues Create Challenges
Sometimes factors like where you live and what kind of insurance you have make a difference as well. In Tennessee, where Julie and Kyle’s family lived at the time, state law does not require autism services to be covered by insurance.
“They were recommending applied behavior therapy for Aldo and we were looking into that,” she says. “After insurance we would be paying $800 a week. It was really shattering.”
So, like many families with autistic children, they researched states where, by law, autism services are covered at 100 percent, and they relocated to Pennsylvania.
After they moved, Tommy’s new school counselor referred him for evaluation, and he received an official diagnosis. It soon became clear that autism runs in both sides of the family. “They were talking about Tommy, but they were also aspects of my life,” Kyle says. He was diagnosed later that year. The family now includes two children and one adult with autism.
As the family settled into a new state, home, and school district, the boys started getting help.
About Autism Spectrum Disorder
Autism is a lifelong neurodevelopmental condition that affects a person’s ability to communicate and interact with others. Autism also affects a person’s ability to process changes and transitions in daily life and sensory information from their environment. Every autistic person is unique, but, generally speaking, autistic children may find it hard to make friends with typically developing peers and may become overwhelmed by sensory input or changes to routine. Some experience meltdowns that caregivers feel powerless to stop.
Autism is a spectrum disorder, which means autistic people experience it on a continuum of severity. Diagnosis is usually categorized as level one, two, or three.
Level 1: The person requires support for learning social skills, organizational and planning skills, and dealing with the expectations of society.
Level 2: The individual requires substantial support with verbal communication skills, understanding others’ body language, and managing changes to their environment or routines, which can cause them significant distress.
Level 3: The person requires very substantial support because of challenges related to verbal and nonverbal communication, as well as intensely repetitive behaviors and severe distress they experience during transitions.
ABA Therapy
Aldo, who is now four years old, attends a preschool that uses applied behavior analysis (ABA), a type of therapy that focuses on teaching specific behaviors and self-care skills. Aldo is working on language concepts, dressing himself, and regulating his emotions.
Kyle describes ABA as providing scripts to follow in a variety of situations, like when to say “I’m sorry for your loss,” versus “Everything will be OK.” As an adult who never received an autism diagnosis or support, Kyle had to learn this kind of thing on his own. “It’s basic pattern recognition for social situations,” he says, “but I’m still not very good at it.”
Julie says ABA works well as long as the teachers develop a rapport with their students first.
“ABA is only as good as the practitioner,” she says. “They were talking to Aldo like he’s a robot, giving him commands and expecting compliance. I told them, ‘You have to have an emotional connection with him. If you are attempting to change his behavior without an emotional connection, he won’t do it.’”
For Tommy, the challenges are a bit more nuanced. At seven, he is in school with a one-on-one aide who helps him work on learning how different social rules apply in different places, like the playground versus the classroom, and handling overwhelming sensory input, like noisy hallways.
Even with support, sometimes the frustrations of a world that is too loud, changeable, and demanding take their toll on the boys, leading to meltdowns.
Kyle says, “A meltdown is when pieces don’t fit, things don’t make sense, and they’re unable to reconcile the reality of the situation and deal with it. It is based on the sheer terror of losing contact with the reality you know to be safe and right and good.”
Other Supports & Therapies
Support for autistic individuals often means therapies that target their specific needs. In addition to ABA, which is considered the gold standard for autism support before age four, support may include:
Speech and language therapy offers support for anyone with difficulties that relate to talking, feeding, processing language, and understanding body language and social cues. The communication challenges that make up major features of autism mean that many autistic children receive speech therapy.
Occupational therapy helps people master fine motor tasks like handwriting, dressing, or feeding themselves, and challenges related to sensory processing challenges, which affect how intensely sensory input affects a person’s nervous system.
“This Is Really Hard”
Julie wants parents whose kids have just been diagnosed to know that there is a whole community that understands what you’re feeling.
“I would tell them, ‘you’re not crazy; this is really hard,’” she says. “I’ve had to change aspects of my personality to be a better mom. I’m not a naturally organized person, and I’ve had to dissolve and reinvent myself to become the kind of mom they needed me to be.”
Kyle agrees that the organizational demands of raising children who are autistic are a lot harder than they should be. “You have to be prepared for a nonstop litany of ‘go here first, do this next.’ And you may or may not get where you’re supposed to go.”
Julie says she has had to employ two opposite modes of communication as an advocate for her sons. “One is ‘I’m a complete emotional mess asking anyone for help,’ and the other one is this really hard-nosed, clear-sighted person going for what they need,” she says. “I’ve had to use both of them. I’ve had to cry on the phone to get help with paperwork, and I’ve had to hire a special education advocate because the school was jerking me around.”
Finding social support is essential. “Even though you feel alone, you’re not alone. Find online groups, especially local ones, that are supportive and loving and won’t shame you. Those communities are lifesavers.”
About the Author
Juliet B. Martinez is a freelance writer and editor with close to 20 years of experience writing on health, science, and parenting topics. A graduate of Northwestern University’s Medill School of Journalism, Juliet has published articles in Chicago Parent and Green Entrepreneur, among others. She lives in Pittsburgh with her husband, a drummer and university administrator; her deaf, autistic, K-pop-loving teenager; and her tween, who still likes to cuddle. Read more of Juliet’s writing at www.julietbmartinez.com.
We’re living in a time when it’s nearly impossible to distinguish fact from fiction. Parents need information they trust to help them make good decisions about raising their curious learners. Britannica for Parents provides safe and credible resources to empower all kids and parents and inspire curiosity for generations to come.
Confession: I am not an expert on all things parenting—yet I am proud in my imperfections. My world forever changed in 2005 when, at the age of 18, I gave birth of my firstborn son. Fast-forward to now and I’m currently raising five incredible children, the eldest having autism and epilepsy. On this journey, I have learned that although my intentions were pure, my actions were at times flawed.
Parenting does not come with a playbook. No matter how many books you read, videos you watch and advice you receive, there will still be an underlying edge of uncertainty. Add multiple children. Add a disability. Add the second guessing: am I doing this right? How can I do this better? Are my children okay?
Experience is a very thorough teacher if you sit back at listen. For 10 years, it was just my older three children. Then 2015, I was expecting again, but this time I was carrying twins. The feelings of betrayal, guilt and doubt overwhelmed me. Can I do this?
I already spent three days a week in a waiting room: speech therapy, occupational therapy, neurology appointment, the list goes one—but I was not alone in these appointments. That’s when it hit me.
Every appointment, his siblings accompanied him. Many of the seizures he experienced, his siblings were by his side. The feelings of helplessness and hopelessness were not just mine to bear. This journey was not just mine and his. His siblings shared in the pressures—the only difference is that they were still children, too.
I spent a great deal of time trying to “protect” my children from their brother’s disability. I thought I was doing them a favor by “taking care” of everything myself. Little did I know that I created a barrier between them and their brother fueling feelings of favoritism, isolation and resentment. These feelings were unknown to me but weighed heavily on them and began to surface in different ways.
I needed to change the way I parented my children, but that could not begin until I addressed the failures of the past. I was pregnant, hormonal, guilty and hurting. I was trying to reach my younger children but scared to admit I was wrong.
How do I tell these innocent super siblings that mommy noticed their pain? How does a parent press restart on the parenting journey? These are the three steps I took to bridge the gap in our family.
Apologies are healing.
As parents we feel the constant pressure of perfection. We fear being viewed as fallible to our children and our families. That must stop. I sat my children down one evening after their older brother went to sleep.
I looked them in the eyes and with a heavy heart said, “I am sorry. I know I spend a lot of time with your brother, but I want to hear from you. How do you feel?”
They responded with eyes looking at the floor, “Fine. I am okay, mom, I know he needs you.”
Insert a dagger in my heart.
My children were still considering their brother and his disability—his feelings—before their own.
I asked them to look me in my eye and said, “You need me. I am sorry if you do not feel I know you need me too.”
Tears formed in the eyes of these precious young souls.
“I miss you, mommy.”
We all cried a great deal that night. No, it was not the answer to every problem, but it was the beginning to a new wave. I spent that evening giving them permission to feel.
Feelings are important.
By opening the door to communication, I gave my children the freedom to feel. They knew that that there was no wrong way to feel regarding their brother. Yes, the time spent would never be equal, but the love from mom was the same. I was on their team regardless of how hard it was.
They told me how isolated they felt. The expressed the burden they carried in weight of being the younger sibling but knowing they were on a higher level cognitively than their older brother. This was huge.
Education is empowering.
I opened the conversation to questions. I did not know what to expect, but their questions came back-to-back:
“What is autism? What is epilepsy? Why does he flap his arms? Will he die having a seizure?”
The items I thought I was protecting them from were the same items they were trying to internalize. They had a million questions and I sat and answered every one the best way I could, ending our talk with, “If mommy does not know the answer, mommy will find the answer.”
Children in special needs family experience things that their peers never encounter. They mature faster because of the things they go though. If parents fail to connect and educate the siblings on the disability, they feel lost and unprepared.
“What do we do when there is a seizure?”
They watched me all these years, but I never communicated the process. I never took the time to address their concerns and prepare them for the possibilities. Fail. We do not know something until we know something.
Now, when someone questions why their brother is flapping his arms, they are equipped to respond: “My brother is stimming. Do you know what stimming is? Let me teach you.”
Looking back, I realized all the ways I could have parented them better, but I did not have time to wallow in guiltiness. My oldest child was not the only one with special needs. The siblings had special needs of their own. They required active attention. They needed me to put them on the family calendar.
All the time I spent ensuring their older brother was okay, I missed that the siblings were not okay. I falsely assumed I was protecting them. I made a change to communicate even when it was uncomfortable.
Parenting is not a one size fits all. All children are different and if we desire to raise secure and strong adults, we must start with ourselves. Acknowledge that while our intentions are good at times our follow though is faulty.
There is power in an apology. I learn daily, yet I make it a priority to address the concerns the siblings face. I am a stronger and wiser parent now. My children know that they matter and that our certainty is that they know they are not on this lifelong journey alone.
Jeniece is a fearless special needs mother of five fabulous children: Christian, Caleb, Jada, Rose and Raymond—all of whom rock her world and shake up her soul! She is the founder of Special Needs Siblings, a non-profit organization committed to supporting the siblings of disabled individuals.
Children go to school to learn, but there’s a lot of learning that happens outside the classroom too. The key to setting up the right play space is to prepare it so your child experiences sensory play instead of regular play. The difference is that they’ll learn how to use and enjoy their five senses instead of just “playing with toys.”
Sensory play works as the foundation for all the skills a child needs to solve math problems, read and write during regular school hours. And setting up a sensory play space at home is easy if you follow these simple tips that won’t cost a lot of time or money.
Kids with autism or other developmental challenges will also experience many benefits from sensory fun. Many children on the autism spectrum are unable to regulate sensory stimuli, and sensory rooms are an extension of occupational therapy in your home, even if they may take additional time getting used to sensory activities.
1. Play with Instruments: Being able to handle the sense of hearing in different situations will help any child succeed in life. They won’t be nervous or afraid to enter new scenarios where there may be loud or surprising sounds once they’ve gotten used to how sounds work.
Investing in instruments makes noises less frightening for kids. It gives them control over what they hear in a fun way. A simple beginner’s keyboard could be all your child needs to develop their ability to handle sounds at different volumes.
Or make homemade bongos with items you probably already have at home.
1. Clean out an empty soup can and cover it with a stretched-out balloon.
2. Use rubber bands to secure the balloon in place.
2. Host a Bubble Wrap Competition: Bubble wrap is something that comes in nearly every package your child will receive in the future, but it can be scary for those who aren’t used to the sound of the bubble wrap popping. Instead, use it in their play space and host a bubble wrap competition by seeing who can create the coolest dance moves to music, while dancing on bubble wrap. It will make the experience of popping bubble wrap much more fun, so the next time your child sees bubble wrap, they won’t be afraid to interact with it or hear it pop.
3. Try Out Finger Painting: Cover a table with newspaper and have your child try out finger painting with all their favorite colors. Finger painting is one of the best sensory activities to do. Your child will use their touch and feel senses, as well as their senses of smell and sight.
4. Hide Toys in a Sandbox: Engage your child’s sense of touch by giving them an activity with sand. Use a sandbox in your backyard or an empty shoebox filled with sand. Hide small dinosaurs or other animal toys in the sand and have your child excavate them. Feeling around in the sand is a great sensory experience. They’ll also love the sense of accomplishment that comes with discovering the toy that’s been hidden in the sand.
Just make sure you don’t hide a toy they love or are used to playing with. It may scare them that the toy is missing and buried under the sand. Instead, get tiny figurines down at your local dollar store that they can even pick out for themselves. They’ll associate the new toy with the new sandbox game and not be afraid of playing along.
5. Create Edible Playdough: Many times, teachers will use playdough with younger kids to provide a sensory activity that gives them the power to make whatever they want. Sometimes, though, playdough isn’t always the best option.
Kids can easily take a bite of playdough when you’re not watching, and it’s not meant to be eaten. Instead, make it completely safe to play with by creating edible playdough at home. All you need is whipped cream, cornstarch, and olive oil. It’s not a healthy snack by any means, but it won’t hurt your child if they accidentally eat some while they exercise their sense of touch.
6. Taste-Test Together: When your child isn’t looking, put some of their favorite foods on a few dishes. Then, have your child close their eyes or wear a blindfold. Put all the bowls in front of them and present them one by one. Your child can have fun tasting the food and guessing what it is. Play along by taste-testing them, too. Have a prize ready for them at the end when they’ve guessed all the foods correctly.
You can combine the taste and touch senses by having them identify foods by feel instead of smell. Green beans, popcorn, and even crackers could be an easy way to do this.
7. Develop Their Interests: When your child plays with friends or on their own, what do they prefer to do? Developing their interests is a great way to work with kids who are afraid or unsure of other sensory experiences. A child who enjoys manipulating toys could try out finger painting. After they realize how much fun it was to play with what you suggested, they may feel more comfortable trying something new, like dancing on bubble wrap. With time, they’ll have so much fun that they’ll forget they’re learning.
Jennifer Landis is a mom, wife, freelance writer, and blogger. She enjoys long naps on the couch, sneaking spoonfuls of peanut butter when her kid's not looking, and binge watching Doctor Who while her kid's asleep. She really does like her kid, though, she promises. Find her on Twitter @JenniferELandis.
What started as a simple, fun ride-on toy for kids has unexpectedly morphed into a mobility device and a business that is helping children with special needs thrive both physically and emotionally.
The Pumper Car was created by Mike Jones, who simply wanted to build something to replace the toy stolen from his son. Mike saw how much his son loved the toy and the entrepreneur in him lit up. He launched Pumper Car in 1998 as a riding toy for children age five to 12. The car is powered using a rowing motion.
Soon Mike was receiving heartfelt letters from parents saying that Pumper Cars helped their kids who struggled to ride a traditional bike now play with their friends and siblings. They also mentioned how the toy was a great workout.
Through word of mouth, the benefits of the Pumper Car started to spread among parents and eventually the medical community. The patented rowing motion that requires kids to use their legs and arms to power the car helps develop core muscles that in turn help with speech development and fine motor skills. The total body workout helps to redevelop muscles and restore joint mobility. While all this is a result of the exercise, the kids simply are having fun and interacting with other children.
“We started as a toy company, but once we realized our products did much more, we changed our focus,” said Jones.
There are more than a whopping 19 conditions that medical professionals have found that the Pumper Car can help with including; ADD, ADHD, Asperger’s, ataxia, autism, brachial plexus injuries, brain injuries, cerebral palsy, childhood obesity, down syndrome, general weakness, hemiplegia, muscular dystrophy, poor regulation of activity level, poor sensory awareness, sensory integration dysfunction, spina bifida, torticollis and type 2 diabetes.
Pumper Cars are also being used as a tool in pediatric physical and occupational therapy to work on a variety of goals including; age-appropriate play skills, bilateral coordination, directionality, extremity development, increased endurance, motor coordination, muscle tone, posture stability, praxis or motor planning, regulation of activity, self-esteem, self-confidence, social skills development, spatial awareness, speech and visual skills.
“The Pumper Car has become one of our favorite therapeutic tools in our inpatient and outpatient programs, said Kristin Brickmeyer-Stubbs, MS, OTR/L, Director of Occupational Therapy at Kennedy Krieger Institute “The Pumper Car can be used with most children with varying diagnoses that effect muscle strength, coordination, endurance, motor planning, visual and sensory-motor concerns.”
An independent review study conducted by the University of Michigan found that Pumper Car had significant therapeutic value for children with Down Syndrome and traditionally developing children. The study shows the Pumper Car provided a full-body increase of 188% in children with Down Syndrome. In usage of traditionally developing children, the device increased the intensity of a full-body exercise by 230%. In 2018, the Pumper Car received the FDAs designation as a non-measuring exercise device means that if Pumper Cars are prescribed by a medical professional, the cost might be covered by private insurance, Medicare or Medicaid.
School districts across the country are getting on track with Pumper Car. Elementary and middle schools use it as therapy for students with special needs, in physical education classes and as playground equipment. Because the Pumper Car creates inclusivity it helps schools address the Every Student Succeeds Act, which aims to provide equal opportunities for special needs students.
“Maria had coordination issues, balance issues and low muscle tone. She was not motivated to really engage in any physical activities,” explained her mother, Irene Rickey. “When Maria saw the Pumper Car she was drawn to it and we had difficulty getting her off it. This device has made a difference in my daughter’s life and I know in many other children with Down Syndrome. Maria is now part of a dance group and is working to try out for her high school’s cheerleading team.”
Currently, the Pumper Car has two models, the original aimed at children ages five to 12 and a junior model created for kids ages two to five. The company is in the final stages of developing a new model called the EXT. This new model is adjustable and can grow with your child from age three to 18.
As a company dedicated to providing fun equipment that leads to improved health and quality of life for children of all ages and abilities, Pumper Car often partners with children’s charities for giveaways and discounts on both a local and national level. Pumper Car has supported Special Olympics, Autism Society, Head Start and more.
Pumper Car Founder Mike Jones had the idea for Pumper Car after a wheeled device was stolen from his son. It was orginally sold as a kids' toy. With its pump action that creates vigorous exercise and activates muscle groups that other devices don’t, it is now enjoyed by children with various disabilities.
