I Need (And Want) To Be A Mom First — Not A Nurse

The enjoyment of my son’s first steps, his first words, and every other special moment after that were partially stolen because of the constant worry that comes with being the mother of a child who suffers from a seizure disorder. Every interaction left me wondering, “What if this activity will cause a seizure—or worse?”

Massiah is medically fragile and suffers from life-threatening seizures and other complications as a result of Tuberous Sclerosis Complex (TSC). TSC is a rare, incurable genetic disorder that causes tumors and tubers to form on the brain and major organs—he currently has dozens of these on his brain, five behind his eyes, and three left in his heart, plus numerous cysts on his kidneys that have resulted in a stage 1 kidney disease diagnosis. Since 2015, Massiah has undergone routine monthly bronchoscopy and laryngoscopy to remove airway growths. Those growths have slowed down due to beginning chemotherapy in July of 2020, but they have not yet gone away.

Courtesy of LaToya Martin

While the PTSD and anxiety of being a mom of a child with disabilities have drastically overpowered the enjoyment of being a first-time mom, it has not stopped me from making sure that Massiah has the best life—and the best healthcare—possible. Shortly after Massiah was born, I moved away from Virginia where all my friends and family live to Delaware to access AI Dupont Children’s Hospital. One of the major fights I continue to battle is Massiah’s ability to have professional medical care at home. He has been able to grow up at home and thrive due to the in-home nursing that he has received through Delaware’s Medicaid program. Due to the COVID-19 pandemic, and me being a stay at home mom, I have not been able to access full-time home nursing care for Massiah. If full-time nursing were available, he would have the necessary medical care he needs, and I would be able to have the relief I need to provide myself with the self-care I need to continue to be the best mom for him.

Courtesy of LaToya Martin

Since I’m a single, stay at home mom, the state only authorizes eight hours of in-home nursing respite care per week for Massiah. Don’t get me wrong—I am so grateful for Massiah’s nurse, and for the two days a week I am able to run errands, deep clean, and practice some self-care while she is there keeping my son medically safe and healthy. But, I am beyond exhausted. It’s simply not enough. Massiah is going through chemotherapy and multiple other appointments and therapies. As his mother, it’s my job to keep him alive. When the COVID-19 pandemic hit, Massiah lost his 55 hour per week authorization for nursing care because he was no longer in school. The state’s justification is that he can only qualify for care when school is in session. This makes no sense. His condition has not changed. I am a mother, not a doctor or a nurse.

Courtesy of LaToya Martin

This pandemic ought to serve as an illustration for the state of how important home care is in keeping vulnerable and medically-complex children like Massiah at home. Delaware can ensure Massiah and others like him continue to be healthy and safe by recognizing that state programs like private duty nursing (PDN) need to be prioritized and adequately funded! This is especially true in times like this, when even taking him to the grocery store and laundromat could result in a serious infection or worse. State home care programs must be better funded so that there are enough nurses to fill the hours Delaware kids truly need. I have fought for years and will continue to fight for Massiah’s care for the rest of my life. But, that care is not eight hours a week. Massiah and I are beyond blessed to be able to have him grow up and thrive here at home, and I can only imagine how much more he would learn and grow if he were able to receive consistent medical care safely at home while I provide for him as I am meant to—as a mom. I need to be a mom first, and Massiah needs me to be a mom first too.

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My Son Didn’t Get To Go To Kindergarten This Year — But There’s A Silver Lining

This year has been challenging for people across the globe. Our family is no exception. In addition to multiple family members contracting COVID, including my five-year-old autistic son, our family experienced loss, medical complications, disruptions in education, periods of unemployment, and more. I am sure you can relate. But, thankfully, 2020 is nearing its finale. And as tough as it’s been, there have been silver linings, especially for my son on the autism spectrum.

Before COVID, my son was in an ESE PreK class in the public school system. When schools went digital in the spring, we quickly discovered learning online would be difficult for him. In the fall of 2020, he started Kindergarten at an autism charter school. The school year began using distance learning. Again, this did not go well.

In our county, students aren’t required to begin school until age six. So we decided to let him wait the extra year. He would remain at his behavior therapy center that he had been attending regularly since age three. At least we could keep something consistent for him during these disruptive and uncertain times. Soon COVID swept through the center. My son contracted the virus, spreading it to our immediate family. Fortunately, our family didn’t have severe symptoms and everyone recovered quickly.

Catherine Falls Commercial/Getty

Once my son’s COVID symptoms subsided and the quarantine time passed, he returned to therapy. At the center, he has been with the same therapist since the beginning of the pandemic. And although having him attend Kindergarten this year was our family’s goal, seeing the progress he’s made with another full year of behavior therapy has been amazing.

During my son’s bonus year of therapy, he acquired skills that once he goes to Kindergarten I know will enable him to thrive. He learned skills such as playing with peers, waiting his turn, sharing items, working independently, working cooperatively, tolerating no, listening to a story, following simple directions, using a writing utensil, feeding himself, toileting independently, and more.

Most children learn these skills organically. However, for children on the autism spectrum, like my son, these skills take significant effort and time to learn. Had my son gone to Kindergarten in 2020, he would not have been equipped with the necessary tools to be as successful as possible.

While our immediate family continues due diligence isolating ourselves from extended family and friends as vaccines slowly roll out, I continue to cling to each silver lining. I remind myself this is a temporary new normal, and eventually, we will reclaim our old normal. Students will return face-to-face instruction in a classroom full of peers. “I do’s” will once again be celebrated with hundreds of cheerful guests. Dozens of laughing children will return to dominate birthday parties, and holidays will again safely include beloved grandparents. It may seem as if we are in a long, dark tunnel, but there is finally visible light at the end.

In every dark cloud, there truly is a silver lining. To find the silver lining in your challenges, shift your perspective. – Author Unknown

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My Autistic Teenager Got His First Job, And My Heart Is About To Burst

For almost two years now, my son Jack has wanted a job. He wanted to work.

I still don’t know why he chose the place he did—a local pasta restaurant in the center of town.

He went online to their website and researched the requirements.

Carefully, he printed out the application. He sat at the kitchen counter and answered the questions about his age, birthdate, and previous experience.

He asked if he was a U.S. citizen. I assured him he was.

They hired him.

For over a year, he has washed dishes from 4:30 – 6:30 every Tuesday afternoon.

He wears a t-shirt emblazoned with the company name and logo, Table 8 Pasta.

This probably seems pretty simple. A teenager wanted a job. He filled out an application. They hired him. They gave him a t-shirt, and every week he showed up to work.

Except he isn’t an ordinary teenager.

He is a teenager with autism.

He has very little working memory, and crushing anxiety, and a tendency to, uh, obsess about certain topics.

He doesn’t read social cues.

My Autistic Teenager Got His First Job, And I Have All The Feels
Courtesy of Carrie Cariello

He doesn’t like a busy environment, or people bustling around, or the sound of the phone ringing.

The concept of money is nearly meaningless to him, and he has no restaurant experience.

Still, he wanted to work.

He applied.

It took him four tries, two pencils, and a lengthy explanation of U.S. citizenship to get the application right.

We drove into town, and dropped it off to a young girl standing behind the counter.

He waited.

He worried, because that’s what my boy does.

He worried they may never call and they would never hire him.

He worried he made a mistake on the paperwork.

They called.

They hired him.

The owner called and said they didn’t have a lot of experience with people who have autism, but they were more than willing to give it a try, and see how it goes.

He washes dishes.

He wakes up at 6:00 am every Tuesday and puts on his t-shirt. He wears it to school. When he gets home he reminds me he has to go to work and he will not be home for dinner.

Many times, he reminds me.

I drive him, because Jack driving a car is a little out of the question right now.

I drive him, and if I’m not ready to go by 4:02, he gets a little, uh, antsy, even though it’s only a 7-minute ride. He starts to pace. He goes into the mudroom and finds my shoes.

He wants to work.

He wants to wear a shirt that matches what everyone else wears, because there is no other instance where he is connected to a group of people by something as ordinary as a piece of clothing.

This week was just like every other week.

Monday night, he laid out his shirt before bed.

The next morning he reminded me he had a shift after school.

At 4:02, he shifted and paced until I found my keys.

I dropped him off and watched my tall son walk through the doors.

This week was like every other week, except when I picked him up, he had something exciting to share.

“Mom. For me. A promotion.”

His face was lit up and his eyes were bright and he was smiling. My boy was smiling.

“Now I will make. The PASTA.”

He is a teenager with autism.

He has a job.

He got a promotion.

Now, he makes pasta.

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I’m A Speech Language Pathologist, But Nothing Could Have Prepared Me For My Own Child’s Speech Delay

“So … how do I refer my own kid for Early Intervention?”

This was the question I asked myself aloud in the kitchen one day as I watched my two-year-old son play in the living room with his Cookie Monster doll. We had just celebrated his birthday, and he had a variety of new Sesame Street toys to occupy himself. I could have done without the talking Elmo, but he was happy. He looked adorable in that moment, with his sandy blond hair falling forward and blue eyes trained on the cookie-crazed blue monster in his lap, but I may have been a teensy bit biased. He was also smart, affectionate, and funny. Perfect, obviously. And yet, I worried about him. I know this sounds like a normal mom thing to do, but it wasn’t just general parenting anxiety.

My son had needed ear tubes to clear the constant fluid occupying his middle ear space around 18 months. He had never had a zillion ear infections like some other kids to clue us in to the problem, but the fluid was there all the same. A hearing test confirmed it was making it difficult for him to hear us speak clearly. The hearing loss caused by this fluid had delayed his speech development. It’s hard to learn to speak when you can’t hear what it is you are supposed to be repeating. I had never been so grateful to have taught him baby signs starting at six months. American Sign Language had given us a way to understand each other before surgery was scheduled … although I may have regretted teaching him the signs for “Elmo” and “candy.” He was making progress with the tubes in place and the fluid cleared, but still was not where he should be developmentally for his age.

I knew this, because when I am not desperate to keep my own kid alive, I’m working as a speech-language pathologist, in early intervention. For those of you not familiar with that term, Early Intervention (EI) is a  program for children under the age of three with developmental delays and/or disabilities. It may also be called Birth To Three, Infants and Toddlers, or something similar depending on where you live. Some state’s programs work with children until the age of five. (I work in Massachusetts, so some more specific details of the program may vary in your area, but the general idea is the same. I can totally hear all the EI providers exclaiming “that’s not how we do it here!”). Children are evaluated at an EI center or at home (or even virtually, due to COVID). If testing shows them to be delayed in an area of development such as motor skills or communication, they are found eligible for services for the next 12 months or until the day before their third birthday.

In general, these services are home based, where a developmental specialist or therapist comes to the home to work with the family. This is often at least on a weekly basis, for roughly an hour at a time. The service provider coaches the child’s family on how best to work and play with their little one to improve their area of delay. It looks a lot like someone giving suggestions on how to best to play with your child … because that is, to some extent, what it is. Children’s work is to play, and that is how they learn best.

Jose Luis Pelaez Inc/Getty

So here I am, a mother whose job it is to use my specialized (and expensive) six years of education to assist caregivers in helping their children to communicate … and I am now the one needing help with my own offspring. The Universe sure has a taste for irony. It was almost embarrassing. How could I help so many other children and their families, but not my own kid? I am his MOTHER. It is literally my job. I sighed. Yet as I looked at my little boy again, I realized that that was the issue. I wanted to be his mother. Just his mother, and not his speech therapist. I needed an outside view of my child, and for someone to give me strategies and suggestions for a change. I needed help, and I reminded myself that there was no reason to feel embarrassed or guilty about that.

In EI, we coach parents on how to rethink play and interact with their kids in order to help them meet their developmental milestones. Early intervention providers identify toys and activities that a child finds interesting and suggest different ways a parent may utilize those items with their child. For example, two-year-old Tommy may enjoy puzzles, and his favorite may be a farm animal puzzle. The provider’s job is to alter the way Timmy and his caregiver play with that toy to best target the area of need.

We may ask, “How can we play with that puzzle AND work on more language? Maybe we label the animals on each piece? We could make each animal’s sound (moo, baa, neigh). How about we model the words for our actions as we do them, such as ‘turn,’ ‘pull,’ ‘push,’ and ‘put in.’” These may seem like simple ideas, but they turn an activity the child enjoys into an opportunity to bathe that child in a whole new set of vocabulary. We don’t have to just count the pieces, or ask them to say please. A physical therapist may coach a parent to hold the pieces up high so a child with low muscle tone has to reach up high for them. An occupational therapist working on sensory regulation could suggest hiding the pieces in a bucket of rice so the child is exposed to new textures as they dig for the different animals. Most therapists and developmental specialists are trained to develop creative, personalized ways to to target multiple areas of need at once, which is called a transdisciplinary approach (in contrast to a multidisciplinary model where multiple therapists see the child to work specifically on their designated area of development.)

I could do all of these things, and had done this with countless families, and now needed to experience the situation from the other side. My son’s language was improving, albeit slowly. I also had concerns about his picky eating, and some sensory difficulties he seemed to have with certain textures. That kid would not touch paint even if it meant I gave him 1,000 Oreos, and the same went for Play-Doh. He also seemed to tire quickly when climbing and sitting unsupported on the floor, and I suspected he had some weak core muscles (sorry dude, you got that from me).

I knew he needed help with more than just speech, but like most parents, I found it hard to admit my child was anything but perfect just the way he was. It was just a tad embarrassing to have to refer my child to a service I provide for a living. I knew better, I knew there is no shame in asking for an evaluation, or services if he needed them. I reminded myself that the shameful part would have been knowing this support existed and choosing not to access it due to my bruised SLP pride. So I called. I didn’t wait to see if he just did better on his own, or if he grew out of his challenges. My son qualified for weekly visits with a developmental specialist and with an occupational therapist. He also attended a weekly EI playgroup, which let him practice interacting with his peers and following classroom routines. His progress over the next year was amazing.

Today he is a joyful three-year-old boy who never shuts up, and loves playing with other kids. He eats a larger variety of foods, and his strength has improved exponentially. I may be the only parent who applauded her child when he could finally climb UP the slide, which requires a good amount of core strength. I’m so glad I didn’t wait, and he didn’t miss out on those services.

The problem early intention providers are seeing is that parents and pediatricians are waiting too long to make referrals to have their child evaluated. Some families wouldn’t even know that EI exists, if they didn’t know someone else whose child has received services. They can’t ask for something they don’t know is an option. Others know about EI but think they need a prescription or referral from a doctor in order to have an evaluation. Pediatricians, DCF, NICU staff, and many other professions do recommend EI services, but parents can also self refer. Let me say that again.. You are the expert on your own child, and you can refer your own child if you have concerns.

Some pediatricians also seem to be hesitant to refer children too early. It is never too early. Even if that child is evaluated and found to have no delays, they can be re-referred anytime before they turn three if new concerns pop up. It’s not a one shot deal. For example, children are regularly discharged from services for meeting motor milestones only to be evaluated again and resume services due to concerns with their social skills or because parents can’t underhand what they are trying to say when they talk. Research shows that while some children will catch up unassisted, some 20% will need longer term support and there is no way to tell which of those two groups a child will be in.

Even as someone who works in the field, early intervention was amazing for our family. Having someone else to give me ideas on activities, tell me how to use strategies during the regular routines of our day, and to look at my son with a new perspective was priceless. It wasn’t always easy, and sometimes downright upsetting to have someone point out a challenge you didn’t even realize your child was having. Yet by my son’s third birthday, when we had to say goodbye to our providers, I was incredibly grateful that they had been in our lives. I learned so much about myself as a parent and about what my child needed to succeed and how to give it to him. Even with a masters degree in communication disorders, I needed help being educated in how best to be the mom my son needed me to be. And we are better for it.

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I Worry About The Amount Of Screen Time Necessary For My Teen With ADHD

My nagging has gotten out of control since COVID-19 hit. Just as I am adjusting to being both my kids’ parent and their elementary and high school teacher, they’re adjusting too, and it’s hard on all of us. My 13-year-old son hears from me every single day, “Turn off YouTube and get back to work,” or my favorite as of late, “Are you in study hall (which is 80 mins)? Study hall is meant for studying!” I mean, I don’t even take myself seriously anymore, and I am certain he stopped weeks ago.

What my wife and I do take seriously in our household as his moms, is that he and our daughters get too much screen time. We all need a break at the end of the day, and our fallback after playing outside and before dinner is allowing them to have television for an hour, then settling down by playing a fierce game of Guess Who.

I worry every day about what the constant access to the computer or television is doing to the developing brains of my three kids, especially my son, who is both on the autism spectrum and has Attention Deficit-Hyperactivity Disorder (ADHD). By the time his school day ends, I am ready for the computer and all screens to be turned off, even if he’s not.

As a family who works every single day to support one another, being home together has added a new level of understanding of what it means to show up for one another. For my son, this means that we support his need for improved social interactions with others through the array of extracurricular activities we’ve signed him up for. He participates in our church’s children’s choir (via Zoom for now), takes piano lessons, has joined a musical theater group, and runs cross country for the first time this year. In all, he gets out of the house and engages with other people which he needs (heck, we all need).

We’ve signed him up for activities even during a pandemic, because if we do not, it will have detrimental effects on how he formulates and understands healthy interactions with other human beings outside of the screen.

I cannot help but think about my own schooling as I wake my kids up every morning, sleepy-eyed, encourage them to put on real clothes and come down to turn on their laptops from school. When I was in high school, my English teacher rolled in a square television to show us a black and white movie, a Hitchcock film I believe. When I desperately contacted my son’s school counselor asking them to turn off YouTube from my kids’ computer, her response was, “We can’t do that; teachers use it for teaching.” Such a difference from my school days. We couldn’t turn on YouTube and watch anything, and I am better for it. But I digress. 

These are the facts: my kid (s) are going to school online and they know how to navigate the internet. They are forced to attend school in ways that I have never needed to. The coronavirus has given us a new way to look at what’s normal for the reality we are living in now, and like it or not, this includes spending an excessive amount of time in front of a screen.

How I’ll survive this school year is a question I ask myself every single day. What has been a godsend is that we’ve been able to keep to the school schedule, and that consistency is essential — especially for a child with ADHD or autism. Assistant Professor of Special Education at Indiana University, Sarah Hurwitz, Ph.D., says in an article for California Life HD, “These kids rely on the predictability of a set schedule. Schedules not only provide cues about what they should be doing, but they can also help reduce stress and anxiety.” In many ways, having a consistent schedule has been our saving grace, for all of us, not just my son.

I look at screen time and my kids’ access to it in a kind of disjointed way. I understand its importance for school; even if I don’t like it, this is what we have. As the parent here, I need to figure out how to take myself out of the equation and look at how screen time can be beneficial, especially for kids like mine.

Randy Kulman, Ph.D., says in Psychology Today, “Many kids with ADHD are impulsive and do not display the best judgment or problem-solving. Keeping kids in the house and engaged, even with screens, is preferable to the risks of infection in the community. Encourage video chat, massively multiplayer online video games with their friends, social media, testing, or even an old-fashioned phone call for children and teens who miss their friends. Remember that they normally spend seven hours a day with their peers in school.”

The internet, as we all know, can be unsafe — and for the teen with ADHD and autism, it can even be a dangerous place. While my role as a mom continues to morph into a hybrid version of my past self, what I am learning is that I too need to adjust to how much screen-time my teen is getting, and get on board sooner rather than later.

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To My Other Kids Not On The Autism Spectrum

I know that is how you must often feel, like my “other kids.” The older three siblings of “the one with autism.” You have never said it. But sometimes in the middle of the night, I lie awake blanketed in guilt.

When we spoke on the phone earlier in the day, I told you how excited I was that your little brother had his first non-meltdown haircut. But I forgot to ask you how your day was. I forgot to tell you how proud I am of you. I forgot to tell you I love you. Your younger sibling’s needs are so big that sometimes I forget to fill your smallest ones.

On most days, it takes more of what I am even capable of to parent your younger sibling. The day-to-day mundane tasks I never even stopped to consider when you were growing up, are all enormous challenges for your little brother. We work hard to help him overcome things that, for you, came easy. He needs more of me than you did, and because of that, now you get less.

Courtesy of Amy Nielsen

I remember when each of you was born. It always surprised me how much of my day it took to take care of a newborn that slept most of the time! In the first few weeks, days would go by before I realized I had not showered. But I loved every minute of those early weeks when I could bundle you each up like a baby burrito and snuggle you until my heart’s content.

Then came the wiggly toddler phase. Whew! The days got long and messy. You strew building blocks, baby dolls, and crushed Cheerios from one end of the house to the other. You had bruised knees from those first wobbly steps, and I scrambled to keep up with jotting down in your baby books the words you began to learn rapidly.

Once you hit school-age, life shifted again. You kept me even busier. Three kids needed help with homework, three kids needed to get to soccer practice and dance lessons, three kids needed dinner, three kids each wanted three friends over. Our home was alive! I never realized how much I would miss those days—the joy of leftover pizza in the fridge and piles of sneakers at the front door.

Your little brother was born when most of you were nearly grown—an unexpected blessing. As a baby, my experience with him was familiar, but when he became a toddler, I knew things were much different. He struggled to communicate, which caused him and me so much frustration.

Courtesy of Amy Nielsen

He struggled if his routine was disrupted. Everyday tasks such as mealtimes and diaper changes were giant hurdles. Our family was overwhelmed. After his autism diagnosis at age three, his life and mine would become consumed with therapy and doctor’s appointments.

His progress over the years has been remarkable, and he is now quite the animated and funny little guy. But he still has progress to be made, and it will still require a part of me that you must give up.

As unfair as that is, I believe the trade-off is the amazing people you have become as siblings of a child with autism. When he sees you, his face lights up as if real-life superheroes just walked in the room. I am sure you can tell by how he squeezes your necks as if he will never let go.

He expects nothing from you, but when you show up with the smallest of trinkets, it is as if you have given him the world. His innocence and vulnerability are reminders that we all have a role in sacrificing for those that need more.

To my older three children, remember you are not “my other children,” you are all my children. I may not have equal time for you, but I love you all equally.

Love, Mom

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Our Family’s 2020 Education Story: We Had To Pull Our Son With Special Needs From His Charter School

Educational choices for children has historically been a fairly easy decision for families. Most families enroll their children in local public schools where they attend with friends within their community. Some families chose to send their children to private schools for religious reasons or specialized programs. Other families elect to homeschool their children as a reflection of their educational choice. But for families of children with disabilities, educational choice is never an easy decision, and given the current state of the COVID-19 pandemic, that decision has never before been more difficult and agonizing.

Our Family’s Education 2020 Story

My youngest son is 5-years-old and has ADHD and Autism Spectrum Disorder. During the beginning of the pandemic, we applied to a highly regarded autism charter school. We were thrilled when we got the news that our son was offered a Kindergarten spot for this upcoming school year.

Despite COVID-19, during the summer, he continued working with his behavior therapist. She has been in our quarantine bubble since the beginning and without behavior therapy, my son struggles with everyday skills that impact his daily living. We approached the summer with the goal in mind that come August, he’d either attend the school for face-to-face instruction or virtually, which is called distance-learning.

As August approached and the virus was still raging through our country, we elected for the distance-learning option. Our county offered a 10-day trial before the official back-to-school start date so students and teachers across the district would know what to expect and could work out the kinks.

On day one, I felt totally prepared. I had a Token Chart ready to reward him for each task and had the daily schedule printed and posted. The school had done a fantastic job of telling us what to expect and providing necessary resources. My son’s therapist would be here to offer her support and I was confident this would go off without a hitch.

I couldn’t have been more wrong.

It turns out, six hours of distance-learning per day wasn’t going to be as effortless as I had imagined. We had to constantly redirect him to the computer to interact with the teacher. Because she was in the room with other teachers, she was understandably wearing a face mask. Verbal and nonverbal communication is already difficult for children on the spectrum so only being able to see his teacher’s eyes made it difficult for him to know what she was saying. There was also so much happening on the screen at one time that he didn’t know what to pay attention to. That made him lose interest quickly and it went downhill from there.

Over the next two weeks, we began to witness a severe regression in behaviors that we’d all worked so hard to help him overcome. While each day he should have been learning to tolerate longer periods of time in distance-learning, he was tolerating less and less. So by the end of the first ten days, he was barely making it through ten minutes.

An Agonizing Decision

We Had To Pull Our Special Needs Kindergartener Out Of Distance Learning
eclipse_images/Getty

Pre-COVID, my son experienced great success in a wonderful ESE PreK program. He is an enthusiastic learner who thrives in an appropriate educational setting. And all summer, he eagerly put on his backpack and headed out the door to see his behavior therapist. Each afternoon when I’d pick him up, he would excitedly greet me while his therapist gave me mostly positive reports of his success that day.

So during the last ten days of our failing distance-learning trial, my husband and I debated each night after our son went to sleep. What should we do? Should we tough it out with distance-learning and hope it gets better? Should we reconsider sending him for face-to-face instruction even though we also felt it would be clunky and awkward for him? How would he be able to tolerate wearing a mask all day? How would he understand what the teacher was saying when he couldn’t see her facial expressions? How would he understand the concept of socially distancing when he still hasn’t grasped the concept of personal space? Should we just continue with behavior therapy for another year and wait and see what school looks like in 2021?

The Advice My Mother Gave Me That Worked

Every day I would speak to my mother as I tried to talk through the best option. The best option for his behavioral and educational needs. The best option to protect our family as best we can from COVID-19. As well as taking into consideration the impact that decision would have on our mental health, because the previous ten days of distance-learning had already started taking a toll.

Yesterday she told me this, “Make a pro and con list of all the choices and that should make the decision obvious.” A mother’s wisdom. Instead of researching online the likelihood of children catching and transmitting COVID-19 or how to help a child with autism learn to sit for long periods of time at a computer, how about take a pen and a piece of paper and write down my thoughts. Write: something I do every single day.

The Decision

Using the pro/con approach helped us simplify the decision for our son’s educational setting amid these complex times. And we decided this: we don’t know what the outcome of distance-learning or face-to-face instruction would be for our son given these unique circumstances, but we do know he thrives in behavior therapy. So will just keep doing what we’ve been doing. He will continue with behavior therapy and his Kindergarten year will be at home in Mom School. Much of the world is in some way functioning in pause, so for now, we’ll pause along with it.

Maybe writing a pro/con list can help you make the “Education 2020” decision for your child that you’ve been agonizing over. Rather than relying on Dr. Google or listening online to hours of school board meeting debates, make the decision personal. And while I know that your family’s decision may be different than the one we chose, that’s the beauty of choice. You get to make the decision that is the most right for your child, and your family in this given moment of time.

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Why I’m So Proud Of — And Scared For — My Teen Working As A Camp Counselor

We are just a few days into the summer, and with the whiplash I’m still reeling from (thank you, COVID-19), life must go on as best it can for my three kids. My son, who turned 13 in November, was ready to enjoy his time away from his parents — who want to know way more about his life than he is willing to offer. He was scheduled to attend sleepaway camp for the third year, choir camp for a week, and try his hand at being a counselor-in-training to gain the work experience he will need upon graduation from high school in four years. But our family’s intended summer plans were drastically altered.

The quarantine has taken away so much from our family: our sense of safety as we walk through our community, physically distant from our neighbors, family, friends, and church community. So the late announcement that day camps could resume gave us something to look forward to. Our son would get the opportunity to gain work experience, be outside, and participate in camp — with a twist.

My son is gaining invaluable life experience as he gets up every day, putting on his light blue camp t-shirt with a smile. I never thought I’d see this kind of joy within him, so outwardly expressed. He is on the Autism spectrum and I refuse to let that hold him back in any way. 

I never went to camp as a kid, and was hesitant to sign the permission slip giving my son to strangers for a week last summer. He would spend the week in a cabin with six or so other boys and a camp counselor he’d never met. My wife and I paid a ton of money for five days of adventure, for our son to undoubtedly replace his showers with the daily dip in the lake, and test his extremely selective palette with the communal meals made up of veggies picked from the garden on campus.

It was an experience for all of us. For my wife and me, it was a week without our pre-teen’s attitude and a week for him to get to know other people and experience a summer unlike I had ever had. In the end, I wanted this summer camp experience for him. As I drove the hour drive north to pick him up last summer, I worried. I worried he would be scarred for life. I worried he would never want to return to camp. I was fearful that I would never want him to experience camp again. But I was wrong.

When he hopped in our car, before we even left the parking lot, he asked: can I come for longer next summer? I was able to breathe a little easier as I eased our minivan out of the dirt parking lot. Our son was maturing and navigating experiences without his parents.

Granted, we’d spent lots of time (and money) to invest in summer experiences for him over the years. The hope, as we wrote each check and paid 20-somethings to help him navigate various social situations, was money well spent. As he matured and reflected on the summer camp connections he made with his peers over the years, how much he enjoyed the daily swim class, or the archery experience or Friday lunches with the entire group, and the end of season celebration which included music, candy, cake, and a dance-off, my kid became a “camper.”

He asked his last year of camp before he transitioned to more of a service learning kind of camp to be a camp counselor. It was a conversation he wanted to have. For me, it felt very fast; in reality, it was for a few summers that I not only became comfortable with the potential of sending him to sleepaway camp for two weeks, but we all looked forward to this particular summer. And then coronavirus happened. And his two weeks of the sleepaway camp instead turned into nine weeks of real-life work experience as he committed to being a camp counselor for two and a half months. We’d sent him to a special needs camp which ultimately prepared us all for his new role as counselor-in-training.

If there is any silver lining in this pandemic, it is that our son will come out of it with work experience that will help him throughout his life. He will navigate social situations that used to bring him much anxiety and some frustration with more ease. He will gain leadership experience which will help as he transitions this school year into a freshman in high school. Being in charge of others (other than his four-year-old sisters) will give him confidence in knowing that he is heard even if not always listened to.

This is only week number one for him, and I’d just begun to breathe a little easier. And then I learned about Elijah McClain and am again worried. I am worried about my Black son who has Asperger’s. This summer, I hope, will never repeat itself with the worry for our Black sons, for our mental and physical health.

I know summer will never be the same or look the same for my son after his experience as a camp counselor in training. But it will never look the same for his parents either — we will all forever be changed because of this particular summer camp experience, COVID-19 and the Black Lives Matter movement.

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What I Worry About Most As My Autistic Daughter Nears The Teen Years

When she was born, she breathed loudly like an old man with a light snore, weird but … so cute.

When she was one, she didn’t walk; instead she clapped and begged to be held by wiggling her chubby fingers in the air … so cute.

When she was two, she didn’t talk; instead she said one word:“Hi.” Over and over and over and over. I was worried, but most agreed … so cute.

When she was three, she started having problems with sleep and would wake up at all hours of the night and stumble in the dark with her rolling curls and sleepy eyes… so cute.

When she was four, she started to become impulsive, particularly when eating, stuffing food in her mouth quickly, messily — which meant food would usually end up in her hair and eyebrows and hands and thighs, gosh… so cute.

When she was five, she began biting her nails, and chewing her hair, and nibbling on things that should not be nibbled on, regardless… so cute.

When she was six, she was diagnosed with autism and although everyone agreed, still … so cute. Only now that sentiment was followed by a smile of pity with “what a shame” written all over their faces.

When she was seven, she began urinating on herself as an escape mechanism from learning activities. But her momma didn’t share that with anyone, so in public, at parties, with family and friends, because they didn’t see any of that themselves, she was… so cute.

When she was eight, she began disrobing when she was anxious or overwhelmed. But her momma didn’t share that with anyone, so in public, at parties, with family and friends, because they didn’t see any of that themselves, she was… so cute.

When she was nine, she started to enjoy dancing, but the uninhibited I-don’t-give-a-crap-who-is-watching kind of dancing; her body moved different, awkward but… so cute.

When she was 10, she went back to public school and despite the fact that she couldn’t read or write, some would see her broken, scribbled tracing on pre-K level homework and think… awww… so cute.

Now she is 11.

Her body is changing.

She is over 5 feet tall and wears my size shoe.

She has body odor.

She sits with her legs wide open regardless of how she is dressed.

She picks her nose with no regard to onlookers.

She undresses with no consideration of her audience.

She has a speech delay and drools when she is tired or when she attempts to pronounce a difficult word.

She has accidents weekly because she gets so distracted or forgets to go to the bathroom.

She is goofy and awkward.

Courtesy of Lisa Peña

She laughs with her mouth wide open and usually full of food.

She eats with both hands as if she is in a race against time with the remnants usually falling all over her clothes and chair.

Still cute?

Over the past few months I’ve wrestled with this. This idea that we have passed the point of cuteness. We have officially crossed over.

I found myself moody and grouchy and annoyed and I couldn’t tell where that negativity was stemming from. But I think I figured it out now.

For the entirety of my daughter’s life, being “cute” has gone hand in hand with acceptance. Not my acceptance, but others’.

Being “cute” has gone hand in hand with tolerance. Not my tolerance, but others’.

Oddness can be so easily masked with aesthetic appeal.

But what now?

What happens to my girl when society realizes it’s not cute anymore?

The self-help gurus say, “don’t worry about others’ opinions” and “other people’s opinions are none of your business.” But what if the opinions of others about my most vulnerable child actually determine the way she is treated? Whether she is respected or not? How she is cared for? How she is spoken to?

Never in my life has the phrase “beauty is in the eye of the beholder” been so painfully true that it makes me wince when I read or hear it.

That’s a nice sentiment when the beholder is the momma, but what happens when it’s not?

I’m scared.

I’m mad.

All over again.

One minute I can rationalize it all in my head and find peace. The autism, the delays, her terrifying vulnerability, the foreverness, the constant nagging of the unknown future before us. All of it. Peace.

But the next minute, my mind is sent reeling.

I’m worried for her.

How do I make people see the beauty I see?
How many blog entries do I write?
How many stories do I tell?
How many trainings do we need?

This is where the negativity I was feeling was stemming from… from the crazy, heavy weight of something being too big, too hard and impossible for me to change or control.

As the gap widens between the rate at which her mind is developing and the rate at which her body is developing, I’m struggling to reach a new level of acceptance. I’m struggling to rediscover peace with it all.

But this is not just about my girl. This is about something way bigger. It’s a social awareness that needs to come to the forefront. It’s about a social movement that needs to catch fire.

Because guess what? All of the special needs children you know right now will be teenagers and adults one day. They too will cross the cuteness threshold.

I can’t control what society defines as “cute,” but I can try to change the perspective of the beholders. I can try to switch out the lens of their life’s camera.

We can behold a messy, compulsive eater and see beauty that is a healthy appetite, which some mommas desperately pray for.

We can behold the oral fixation as a sensory mechanism to cope with stress and see beauty in those that try to make her feel safe.

We can behold awkward public dancing and see the beauty in living a non-filtered, completely free life.

We can behold the weight gain and body odor and oily t-zone and see the beauty in puberty that makes her fit so perfectly in nature’s plan.

We can behold the homework that resembles preschool level at best and see the beauty in the effort.

We can behold a teenager that wears mismatched clothes and shoes on the wrong feet and see the beauty in a young woman who could give a flying flip about what she looks like. She will still say “Hi” to you and hug you and help you — just say the word.

We can behold a human being with the mind of a child and the body of a woman and see beauty in the preserved innocence and beauty in those that fiercely protect her.

If society engineers us to be more tolerant and accepting of that which is aesthetically pleasing … and if beauty is in fact in the eye of the beholder… let’s redefine beauty.

Isla’s life and spirit has literally forced my predetermined, preprogrammed mind to redefine all that I know to be beautiful. Simultaneously, I’m learning to cope with the ramifications when society does not agree. This is hard and uncomfortable work for me but I’m gonna lean in until my lens has changed and zoomed in and comes into focus.

So the next time you see someone in public who by your determination is vulnerable in anyway — it could be someone with an obvious and serious disability, or maybe it’s as subtle as a teenager or adult with mannerisms not quite matching up to the age their body suggests — my greatest dream is that your heart and mind immediately are drawn to protect them, not avoid them. Respect them, not judge them. Assure that while they are in your view, people are kind to them.

What will you choose to behold?

Man, I hope you don’t miss out on the beauty.

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A ‘Peanut Butter And Jelly’ Analogy Helps Explain What It’s Like To Live With ADHD

Those of us who live in the neurotypical realm sometimes have difficulty understanding what it’s like for people whose brains and bodies operate differently than ours. Even if it’s our child or loved one who is struggling, we may be apt to make quick judgments, become easily frustrated, and basically feel like we just don’t get it.

Take ADHD for example, one of the most prevalent neurodevelopmental disorders out there — one is that is often diagnosed too late, and which commonly causes kids and their parents a whole lot of stress and heartache. The thing is, even when your child is properly diagnosed with ADHD and given a treatment plan, they may still face struggles on the daily, and you (and their teachers) might feel at a loss as to how to handle these challenges.

Well, one ADHD mama named Jane O’Connor is here to help. O’Connor, a Speech-Language Pathologist and mom to an 8- year-old son with ADHD, recently posted a thread on Twitter about the “peanut butter and jelly sandwich” analogy to illustrate what it’s like to live with ADHD.

And oh my goodness, it’s totally spot-on and a game-changer for anyone who parents an ADHD kiddo.

First, O’Connor spends some time describing the ways in which ADHD brains work differently than more neurotypical ones – and it all has to do with how the ADHD brain processes short term memories, or Working Memory (WM), as O’Connor refers to it. In a nutshell, when you have ADHD, you have trouble holding onto Nonverbal Working Memories.

According to O’Connor, Nonverbal Working Memory refers to “your ability to hold images in mind.” This includes the propensity to “see scenes from the past, pictures you saw, where you left your keys.” Finally, O’Connor says, Nonverbal Working Memory helps you picture and imagine future events.

Nonverbal Working Memory is something that just doesn’t work quite right in people with ADHD and executive functioning disorders. In other words, they can’t picture what the end result of a particular task is supposed to look like – and when you aren’t able to do that, it can be seriously difficult to complete the task.

When this isn’t something you personally struggle with, it can be really tough to understand what it must be like for someone who does.

“Because #neurotypicals just imagine what ‘done’ looks like, and work backwards from there to figure out what steps to take,” O’Connor explains. “Then backwards again to figure out what they need to get started. Then they know how to start.”

OK, so here comes the peanut butter and jelly sandwich analogy (you know you were wondering how that fit in!). O’Connor – who credits the analogy to her speech language pathologist colleague Sara Ward – explains that when a neurotypical person sets out to prepare a PB&J, the first thing they do is picture the end result, or the sandwich itself. This is what helps them plan the whole process of making the sandwich.

But someone with ADHD simply can’t do this, so it becomes very hard for them to complete the task of preparing the sandwich.

O’Connor describes what it’s like for a neurotypical person to work on that sandwich, having had the end result in mind the whole time.

“What are the steps to achieve the ‘done’ image?” O’Connor asks. “Well, laying out the bread, spreading the peanut butter, spreading the jelly, putting the two sides together. BAM. What will I need to prepare to do those steps? Bread, peanut butter, jelly, knife. BAM.”

In other words, neurotypical folks can plan backwards, starting with the image of the completed sandwich and working from there. But ADHD folks just can’t do that.

And here’s where the most genius aspect of all of this comes into play. O’Connor has a simple and effective solution for dealing with the Nonverbal Working Memory deficit experienced by children or others with ADHD.

If they aren’t able to keep the end result in mind, explains O’Connor, well then you can do the work for them – by showing them a physical picture of what they are working towards.

O’Connor says that doing exactly this for her son has helped him perform everyday tasks that used to prove extremely difficult due to his ADHD. For example, check out her solution for her son’s morning routine:

“What does ‘ready for school’ look like? We took a photo of him ready with all his things. Now each morning I show him that and say “match the picture” and he’s ON IT. The photo helps him see the wholeness of what HE looks like in the future. He can see the done.”

This is absolutely amazing and makes total sense.

O’Connor says this practice has also helped her son deal with anxiety or fear of the unknown – because instead of him feeling like he has no idea what a new experience will be like, she can present him with a visual of that thing, and ease any fears.

She has also shared this technique with her kid’s teachers, with much success.

O’Connor also advises that simple check-lists, which are often enlisted for kids who struggle with ADHD, just aren’t enough – because it’s all about the image of what the end product is supposed to look like, and verbal or written cues don’t suffice.

Of course, it should be stressed that all kids are different– even among kids who share similar struggles and diagnoses — so this exact practice may not be the magic ticket for your kid. But my guess is that it could be helpful to many kids who have executive functioning challenges, probably even ones who have milder or undiagnosed challenges.

Either way, it’s an explanation that is super helpful to those of use who are neurotypical and have trouble getting into the mind of someone who is differently wired than we are. And we all know that when it comes to helping our children thrive and grow, a little compassion and understanding can go a long way.

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