The Secret Way I Get My Son With Special Needs to Brush His Teeth

2k
2k

My 5-year-old son, Eli, is low verbal and has moderate-severe autism. I’ve heard from many other parents of kids with special needs who say that getting them to brush their teeth is a real challenge. Just six months ago, I was one of those parents. I tried giving him a toothbrush with his favorite character on it, another one that played music, even an electric toothbrush and yummy tasting toothpaste. I even tried no toothpaste. Nothing worked. So I usually ended up chasing him around the house to try to get a few brush strokes in.

After we moved from Florida to Washington, we had to start over on setting up therapy sessions for him, which meant a lot of wait lists. When he finally was able to start occupational therapy, I expressed my concerns with his therapist about his teeth brushing. She told me to bring his toothbrush in the next week to see if she could help.

I was skeptical, because I thought I had tried everything. We all went into the bathroom, he stood on the step stool by the sink and she started singing, “This is the way we brush our teeth, brush our teeth, brush our teeth, this is the way we brush our teeth, brush our teeth.” Amazingly, it worked. He brushed his teeth. I was shocked. He started to get annoyed and said he was “all done,” but she told him she was going to sing the song two more times, then he would be done. And he actually complied.

Eli during his first visit at the dentist.

So I figured I’d give it shot at home. Honestly, I thought for sure he let his therapist brush his teeth, but there was no way he was going to let me. Boy was I wrong. I started off by singing the song just three times like his therapist did, and then I would sing it more and more each week. We’re now up to singing the song 10 times, which adds up to two minutes of brushing twice a day. His teeth sparkle.

Teeth brushing wasn’t our only issue. He hates having his hair washed and conditioned. He would scream, cry, hit and push my hands away. I wash his hair every other day to every couple of days and would always dread it. Until about a month ago, it dawned on me that maybe I should use the song. So when hair washing day came, I started singing, “This is the way we wash our hair, wash our hair, wash our hair.” I told him I would sing the song three times. And he stood there and let me do it. I was ecstatic. I did the same thing for conditioning and replaced “wash” with “condition.”

So there’s my secret. A simple song. I’m not sure if he likes the song or the fact that I tell him how many times I’ll sing it, so he knows when it will be over. Maybe both. But I’m one happy mama.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

2k
2k

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

They Complimented My Weight Loss, So I Ignored the Other Symptoms

580
580

In middle school, I started losing a lot of weight. It came out of nowhere. I didn’t change my diet, I wasn’t exercising more than usual and to be honest, I probably spent most of my time on the couch watching TV. Still, I lost about 20 pounds in only a month. I was always a chubby kid — healthy, but never super skinny. Then all of a sudden when I magically started losing weight, I dropped from a size 5 to a size 1.

To be honest, I was pretty excited about it. It’s a good thing to lose weight, right? People would comment on my weight loss but always positively. I don’t blame any of them, of course. They had no idea what was really going on.

Because the truth was, while I was pleased with the weight loss, I was ignoring a variety of symptoms that had begun popping up. Loss of appetite, nausea, vomiting, abdominal pain, diarrhea — all symptoms I experienced and ignored for a long time.

Maybe it was a form of denial, or maybe I was just scared, but I know the effect the symptoms had on my physical appearance influenced my reluctance to find out what was wrong. It’s so bizarre to think about how from the outside I probably looked great, while on the inside I was anything but. On the inside, I was slowly deteriorating. 

Eventually, when the symptoms became so severe that I had to go to the doctor, I was diagnosed with Crohn’s disease, a type of IBD, or inflammatory bowel disease. It’s also an autoimmune disease; the inflammation is caused by the immune system attacking the digestive tract. Your body gets its nutrients through digestion and Crohn’s messes all of that up, so you don’t absorb nutrients as well as you should. This meant that my weight loss was not only attributed to loss of appetite, but the fact that I was actually malnourished. It‘s terrifying when I think about it now. Here I was, so thrilled to be losing weight, and it was because my body was actually lacking what it needed to maintain a normal body weight. The doctor was surprised at how severe the disease had become. Looking back, I wonder if it was my hesitation of seeking treatment that let it become so bad.

A major part of my recovery was g aining weight. With the help from medications, I did. I was put on a drug called Prednisone and gained back every pound I lost while I was sick. One of the side effects of the drug is called “moon face,” which causes your face to swell to a round, or moon, shape.

It was a really emotional time for me. My previously sky-high body confidence had shattered to a million pieces. It took a long time, I’d say nearly a year, before I was really healthy again.

Today I’m a size 8, and I’m really happy about that. I actually hope I’m never a size 1 again. The last time I was a size 1 was the worst time of life. Size 1 me was not healthy me. 

Now as a size 8, I’m happy and healthy, and I couldn’t care less how much I weigh or whether people think I’m fat or skinny. All that matters is is how I feel.

A version of this post originally appeared on Syracuse University’s Active Minds blog. 

The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

580
580
JOIN THE CONVERSATION

My Most Truthful Desire for My Son in the NICU

494
494

My son suffered severe brain damage due to a birth injury and spent the first three weeks of his life in the NICU. The following is something I wrote as I wept and wished I could take him home from the NICU.

Dear Son,

I sit on the metal bench beside the circle drive of the hospital. Misshapen circles of rust have formed on it; the paint has separated and fallen away. The air is cool but not cold, and my spot in the sun keeps me warm. The air is fresh, the breeze is crisp and I am waiting for your father.

He will be here any second to pick me up. I look down at my hands; your new monkey toy, a gift from a friend, is cradled there gently. I stroke his soft fur and wonder if you’ll ever recognize that feeling. I picture you toddling about the house, dragging him around, knowing full well it is possible you may never walk. I hear your laughter. I push you on the swing.

A minivan is parked beside me. An older gentleman is getting out. He has a camera in his hands. He opens the side door. I know what is coming. I try to control my emotions, to look the other way. I look at the monkey, then toward the hospital doors. Here she comes, the new mother, bundled car seat on her lap. She is taking her baby home. No matter how many times I see it, until I bring you home, this scene breaks my heart. The older gentleman snaps photographs, the woman gets in the car, and tears for you stream down my cheeks. Your father arrived in time to notice, and the pain radiates through him as well.

I weep as I get into the car. Your father takes my hand and begins to drive us home.

I will write to you, I think to myself. I will write to you in the hope that someday you will be able read it, knowing you may not. We do not know now what your future holds in store. You could have any range of abilities, and we will not know what you can do until you show us. I can only hope that maybe your difficulties, should they be great, will in the end allow you to see only good in the world and make you impervious to the evils of others.

So far, dear Jak, you have been miraculous, you have fought so hard and you have done everything we have asked of you. And do not think for one second I don’t believe in you, and I won’t do everything in my power to help you develop to your fullest extent. I know if it is possible, you can and will do it. You are so strong. Mommy and Daddy could not be more proud of you, and whatever you can or cannot become, our love for you will never waiver.

My one most truthful desire is that you will know only love and happiness, and the depth of both that you have created for your father and me. You are our Jak, our perfect son, whose eyes light up the moon.

My son is now just over a year old, and he has developmental and motor delays with medically intractable seizures. He is the sweetest, happiest boy I know.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

494
494
TOPICS
JOIN THE CONVERSATION

I Have a Son With Autism and Don’t Know What’s Best for Him

261
261

Have you ever been thrown into a job that you were completely unqualified to do, but had to do it anyway? I know that describes parenting in general, but it’s been extra obvious to me lately as we continue to navigate Charlie’s diagnosis and what that means for him.

The thing about autism I never realized before now is that there is no “autism doctor.” There is no specialist you can go to for regular check-ups. In reality, there is an unending list of therapists with varying specialties and a thousand methods to address the challenges that come with the disorder. And don’t even get me started on the insurance. There is literally everything from dietitians, physicians, teachers, therapists, and even swim instructors, camp directors and horseback riding programs, all toting their methodology as being best for children on the spectrum.

Where do you even start? What is right for your child? I’ll be the first to admit I have no idea what is best for my child. I don’t know what he needs; I don’t know how he’s feeling because he won’t or can’t tell me.

While we wait for his medical assistance paperwork to be approved, all we can do is try to support his anxiety and behaviors at home. The confusion never seems to end though. Is this because he’s 4 and 4-year-olds are unruly at times? Or is this autism? Should we challenge him on XYZ, because it’ll help him grown and learn? Or will challenging him trigger a panic attack? I might as well flip a coin, because your guess is as good as mine.

A truth I can’t seem to get through my head is that it doesn’t matter what typical development looks like anymore. Typical is not necessarily typical for Charlie. Sure, he’ll adhere to some trajectories, but for the most part, he is going to be on his own path through his own forest. Maybe my frustration isn’t frustration at all; maybe it’s the fear that we will lose him in that forest.

As the past several months have gone by, Charlie has started to shut out activities he once enjoyed like puzzles, Legos and coloring. He spends an obsessive amount of time each day focused on letters, spelling, writing and pointing out letters.

Most attempts to leave the house have turned from resistance to sobbing meltdowns. Over the past few weeks, he’s developed a few new behaviors that my friends have suggested could be anxiety from moving or because of his sister Ginny’s surgery. It breaks my heart to know he’s hurting or confused, but he doesn’t know how to process or communicate it.

This is where I feel unqualified for this job. I don’t know how to help him right now. I’d like to think that getting medical assistance or reaching out for therapeutic staff support will be the magic bullet, but I know it won’t be. It’s only part of the equation.

So much of this has to do with us, my husband Jeff and me, realizing and accepting that for Charlie, his world is completely normal and any insinuation contrary to that comes from us and others around him. Even if I can’t do anything else right now, I need to keep reminding myself of that.

A version of this post originally appeared on All Four Love.

The Mighty wants to hear more about relationships and special needs parenting. Can you share a moment on your special needs journey that strengthened your relationship? If you’d like to participate, please send a blog post [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

261
261
TOPICS
JOIN THE CONVERSATION

How This High School Student With Special Needs Broke a School Record

87
87

This high school’s prom season had a record-breaking moment.

Katie Shipley is a senior at Southridge High School in Beaverton, Oregon. Shipley, who has a rare chromosome disorder and a form of dementia, was recently voted prom queen, USA Today reported. After Shipley told some people she wanted to be nominated, several of her friends began to secretly campaign for her on campus.

Shipley won with more votes than ever before in the school’s history.

In the moment before she was crowned, the crowd chanted “Katie!” over and over.

They made me feel happy,” Shipley told USA Today. “I love being the prom queen. I just love it.”

Watch the moment Katie’s victory is announced at the 0:53-second mark in the video below:

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

87
87
TOPICS
,
JOIN THE CONVERSATION

What I’d Change About the Way My Mom Treated My Disease

479
479

“I remember being so curious about your condition in high school, but too sheepish to ask you. You inspired many investigative diagnostic queries into my mother’s medical texts, and as a result, I learned a whole hell of a lot about many disorders, none of them being the correct one! I wanted to know what you were going through, what it was like to be you. Was it painful? Your ravaged skin seemed like it would be painful even to a tender touch.”

This is an email I recently received from a woman I went to high school with 23 years ago. I had no idea she even knew who I was, as we never spoke to one another. Her words perfectly illustrate why I want to offer advice to parents of children who have visible or invisible issues that make them notably different from their peers.

In 1985, I was diagnosed with scleroderma at age 10. My mother shared minimal information about my disease with me and told me not to tell anyone about it. I love my mom and am eternally grateful to her for raising me. But I do think she made a mistake in her approach to my disease. She had her reasons for her decisions, which she now readily admits were flawed. Like many parents, I think she wanted to deny there was anything wrong with her daughter. If she denied my disease with fierce devotion, maybe it would go away.

My mom’s plan not to discuss my disease was half-baked at best, as demonstrated by the photos below.

Here I am at age 10. This was taken just months before my formal diagnosis.
Here I am at age 12. I’m not purposely posing with a bent arm to be trendy. My arm was permanently contracted in that position.

It’s difficult to ignore such a potent physical metamorphosis. My disfigurement aside, there were so many things I couldn’t do that set me apart from my peers. The bottom line is that ignoring something does not make it less real. I was not equipped with the tools to accurately communicate information about my disease. It took me until age 40 to develop a solid and confident response to the whispers that have followed me around for the past three decades.

Here I am at age 16. Notice my fabulous toothpick legs and super cool tree limb arms. Guys were banging down my door to date me.

My advice to parents is to be open about whatever your child’s issues happen to be. Children take cues from their parents. If their parents are hesitant to openly discuss important topics, they will grow fearful of them and the “secret” will fester. Don’t underestimate the toxicity of secrets. Even my best childhood friends knew very little about my disease. Simple questions would trigger fearful tears from me, so they learned quickly not to ask.

Before I became a reading specialist, I was a fourth grade teacher. Each year, I had several students who fell into the “notably different from their peers” category. Some parents forbade the school to talk about their child’s differences with the class. They claimed that they wanted their child to have as normal of an experience as possible. These parents loved their children with fierce intensity and did not want them to be hurt by labeling or negative stereotyping. Of course, I respected their wishes and did not violate their request.

Other parents were open to coming in and sharing information about their child with my class. My students sat on the floor in a circle surrounding the parent speaker and were given the opportunity to ask questions and learn. Sometimes the child wanted to be present for the conversation and even lead the discussion. Other times, the child chose not to remain in the room while the dialogue occurred. Over the years I had parents talk about autism, cerebral palsy, Tourette syndrome, ADHD, peanut allergies, hearing impairments and more. Without exception, these discussions led to deeper understanding and empathy from the students. I only wish I had been brave enough to start off these discussions by first telling my students about my scleroderma and explaining why I looked different. This remains one of my hugest regrets, as I think it would have brought comfort to so many of my former students.

Parenting a child with an invisible or visible condition can present extraordinary challenges. Every circumstance is different and must be carefully considered by those who know and love a child best. Some parents may argue that they don’t want to call further attention to their child or cause them to feel insecure. I’m willing to bet that 99.9 percent of the time, that child already feels quite different. This is strictly based on my own childhood experiences and what I’ve observed in my 19 years of teaching children; I’m no child psychologist.

If I could turn back the clock, I’d want my mom to do this: come into my childhood classrooms each year and talk to my peers about scleroderma. I think it would’ve demystified the rumors that surrounded me and allowed me to be comfortable in my thick skin decades earlier.

My mom is a wonderful lady who has overcome tremendous obstacles in her own life. We’ve all made mistakes, and my purpose in sharing this is not to publicly shame my mother. Instead, I hope to convey the importance of open and honest communication about tough topics and maybe even change some parents’ approach to disclosing information about their kids with visible and invisible conditions.

A longer version of this post originally appeared on Comfortable in My Thick Skin.

Want to help celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

479
479
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.