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
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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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When My Preteen Daughter Started Using A Wheelchair, People Began To Treat Her Differently

When I was pregnant, I remember being appalled by the audacity of people who would freely comment on my growing belly. “You’re so big,” they’d coo. Or they’d just reach out and pet me, as if I were an animal. And I’d squirm, uncomfortably. Because normalized or not, it’s wildly inappropriate and awkward.  Then once my daughter was born I remember being even more appalled that strangers would try and tell me how to parent her. “Put that baby down” they’d say, as they saw her on my chest in a wrap. Or, “she’s too big for that,” as she nursed at a year. And worst of all, people would touch her, without first asking me. But, as she grew up, the unsolicited advice tapered and fewer and fewer hands reached for her. And it was a relief. We’d reached the point where our autonomy was respected and our space was ours.

Then, a seizure took my daughter’s mobility. Resulting in her becoming dependent upon her wheelchair. And like that, we traveled  back 10 years.

Again, people feel entitled to comment freely.

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They ask her “why she needs a wheelchair when she’s so young?” They tell us about the oils and juice products they sell, as if they’re a “miracle cure.” They tell her “if she just tried harder…” completely unaware of the hours of therapy each day for her holds. And it makes me crazy. Because THEY DON’T KNOW. And it’s not their place to. She shouldn’t have to justify the space she takes up – yet, every day she’s asked to. She shouldn’t have to listen to sales pitches or hear she’s not doing enough, just because she relies on adaptive equipment. And she should never publicly be asked her private medical history to appease the curiosity of someone who has no “need to know.”

Yet, her wheelchair invites all these uncomfortable conversations and so many more.

Her wheelchair, for reasons I will never understand, takes us back to a place most people “outgrow” by their second birthday.

And it’s not just words.

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People approach her with “kid gloves” on. Without asking, they move her chair, assuming she can’t, pat her on the head and patronizingly call her “sweetie.” They suddenly cut up her food at restaurants,  bend down to talk to her — or worse yet, look past her and talk to me. Which, of course it’s makes no sense. There’s ZERO connection between her legs and the deficits they perceive. And it drives us both bonkers.

But whereas I get frustrated, she responds with grace. She explains that she can use her hands, usually even proudly exclaiming she “graduated occupational therapy. She’ll tell you her ears work fine, and she’ll say “I’m sick, not broken.” If you ask her “why she’s out and about” or “how she got somewhere,” with a smile she’ll ask the same of you.

And I am SO proud of her resilience, but heartbroken, too. Because it shouldn’t have to be this way.

My Gracie is a strong, independent and fierce girl. She’s a horseback rider, a science enthusiast and an outspoken community activist. She’s a strong student and a wizard in the kitchen. She loves fast cars, painting nails, and hanging out with her friends. She’s quick with a joke and in times of tension, always the first to forgive. These aren’t things that make her brave or extraordinary, as people who see her in her wheelchair often will exclaim, they are simply the traits that make her, her.

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She lets nothing stand in the way of her best life, though everyone expects her to. And it’s hard. Because while she’s out there “living,” she’s also having to prove her worth. And I want to jump up and down and scream on her behalf, because it’s not fair.

But, while I am stomping my feet and having a tantrum, she’s moved on. Because she knows her abilities and worth and isn’t worried about those looking on.

She does what she can – and asks for help where it’s needed.

She doesn’t get mad when people assume she can’t — she takes the time to tell them why she can. Her patience is greater than mine and for that I am proud.

But I ask of everyone reading — for her, and for others in wheelchairs — please recognize wheelchairs are tools for mobility, not universal limitations of the human experience.

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A Woman On An Airplane Questioned My Kid’s Autism

Recently I was waiting to pre-board a plane with my two young children when another passenger grabbed my shoulder. She told me I needed to wait for family boarding, to which I responded it was indeed our turn to go.

“How‘d you manage that?” she asked.

“We have different circumstances.”

“Lucky you,” she replied with an eye roll.

Yes, lucky me. My children have autism and the one time it’s envied is when we get to enter an airplane first.

It wasn’t the time to teach someone about invisible disabilities—I’m sure she just thought we were cheating the system—but this small moment reminded me that the outside world often can’t identify my children as autistic, and sometimes that’s a downfall.

Because we do in fact have “different circumstances.” And when that’s known, we’re met with understanding—as in the case of the airline. All it took was me mentioning my children had special needs and we were chauffeured into front row seats, no questions asked.

Courtesy of Stephanie Hanrahan

But when it’s not known—when my children look “normal” but have brutal breakdowns, or blurt out words that make no sense, or ignore a peer trying to play with them—they’re considered weird, rude even. Which is exactly why it’s so important to share.

I’d rather my kids be known and loved for who they are rather than hidden and misunderstood.

I got this wrong for many years. When my oldest was diagnosed, I went into hiding. The world convinced me that being different meant being less than, and that if I shared her truth, it would automatically equal judgment. So I would explain her quirks to teachers, and classmates, and friends, but never use the actual word autism.

What a shame that I let my beautiful girl only be halfway seen.

Because the truth is, when I finally spoke up and stopped being small, I was met with an overwhelming amount of acceptance.

Autism is just one of the many amazing facets of my children, and if I want them to be accepted—truly accepted—people needed to know every crevice of them. It is my job as their mother to teach the world of their incredible worth. Gone are the days of cookie-cutter kids and white picket fence perfection. If we want to be loved, we have to be real.

And that same sentiment needed to be applied to me too.

My “different circumstances” aren’t visible to eye either, nor are my husbands. In fact, my entire family blends in pretty easily, so for many years I was committed to keeping our cracks concealed and only posting our prettiest parts.

The day my daughter was diagnosed with autism, I opened a private Instagram account just for me. I was in such deep grief and needed a place to release it, so I used the space as a journal—a place to pour my not-so-pretty into—and never intended to make it public.

But a year ago, when I posted our most recent family photos on my main account, people’s comments over how “perfect” my family was completely gutted me. They were seeing a curated photo, but no one knew the entire picture of our lives—or our struggle.

Courtesy of Stephanie Hanrahan

So I decided to release my real self, and that private Instagram, to the world.

Now, when you see a picture of family, you know the story behind it. Autism, yes, but also a husband with a failing heart and a wife who has been the survivor of abuse, anxiety, miscarriage, and more.

Now, by breaking the silence and shouting our truth, we are understood.

That woman who questioned us wasn’t at fault. There’s no scarlet A burned on my children’s foreheads. They fall pretty high on the spectrum, so if you don’t know what you’re looking for, it’s often easy to just assume the worst. So that is why we must always keep in mind that behind a picture—or a person—is often a battle we cannot see.

Everyone has an invisible disability—anxiety, depression, binge eating, low self-esteem, people-pleasing, shame, addiction, comparison, doubt—so the best I can suggest is that we err on the side of kindness and always be honest about our “different circumstances.”

And when you’re ready, release it. Let your real self be seen—to one person, or the entire world.

Because there is no greater gift than being accepted exactly as you are.

 

We are Scary Mommies, millions of unique women, united by motherhood. We are scary, and we are proud. But Scary Mommies are more than “just” mothers; we are partners (and ex-partners,) daughters, sisters, friends… and we need a space to talk about things other than the kids. So check out our Scary Mommy It’s Personal Facebook page. And if your kids are out of diapers and daycare, our Scary Mommy Tweens & Teens Facebook pageis here to help parents survive the tween and teen years (aka, the scariest of them all.)

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Date Nights Aren’t Always As Simple As Hiring A Babysitter

Once you become a parent, everyone will tell you that you have to go on weekly “date nights” to keep your marriage alive. A night out with your husband, remembering what it was like pre-children, discussing something other than your kids sleeping habits, eating schedule, or bowel movements is an absolute necessity to keep the love strong. It really is a glorious event; having a laugh, maybe a glass (or bottle) of wine and just being a couple for a few hours can help provide new perspective on parenting. You return to your children nicer and ready to take on the next week, and plus, you remember why you married your husband.

Thanks to social media and “Insta,” you are bombarded with boomerangs images of cheers glasses with a cute little sticker proclaiming #datenight, #nokids, #parentsnightout… Or even “instastories” documenting weekend getaways with your BAE. Every parent should have the opportunity to get away because honestly, parenting is really freakin’ hard.

I am one of those parents who loves to have a night out with my husband or even a weekend getaway. We have three beautiful daughters ranging in age from one to nine, and between their dance, soccer, school, nursing, and social schedule we are pretty booked up. But like I said, it’s important to make those nights away happen. Unfortunately, for our family and many others like ours, date nights are not quite as easy and carefree as they should be.

My daughter was diagnosed with type 1 diabetes at the age of 13 months. Yes, we had 13 romantic months where we could take semi-worry-free “date nights.” But as most parents know, especially with their first child, leaving them with anyone their first year of life is challenging, so really I wouldn’t even count the first year. I don’t mean to complain, but over the past eight years that we have lived with this high-maintenance disease, I have had multiple nights of what I would affectionately call “date night envy.”

Truly, I am happy for all those parents who can call a babysitter at a moment’s notice or drop their kids off at “parents nights out” at the local YMCA. Unfortunately, that is not the reality for families that have “medically complex” kids such as ours. You see, my child comes with a set of instructions… a long set! Like a set of IKEA instructions!

For those of you who may not be familiar with type 1 diabetes, it is an autoimmune disorder that causes your body to attack itself, therefore your insulin (the stuff that breaks down the sugar in your blood from all the carbohydrates you eat) no longer works. Translation: your pancreas is now a useless organ, and in lieu of that useless organ you must now inject synthetic insulin into your body multiple times a day to ensure that your blood sugar doesn’t get too high.

That means that everything — I mean everything — that my daughter ingests must be monitored so that the person acting as the pancreas (us) can administer the right amount of insulin. Too little insulin can cause high blood sugar which has devastating effects on her future health, or too much insulin which can cause loss of consciousness and death. So you see it’s a very tricky little disease that has many factors at play.

Entrusting a babysitter or caretaker who is not familiar with type 1 to administer insulin, quite literally a medication that saves lives but can also kill you if dosed incorrectly, is very hard to do. Not only does it place a great amount of burden on the caretaker but it also creates stress on the parents and child. That is not to say that we have not had our fair share of date nights since her diagnosis eight years ago. We have had family members learn diabetic care and even a couple of trustworthy babysitters. And of course, thanks to the blessing of technology, I can now monitor her blood sugar from my iPhone, which makes life easier (thank you #dexcomg6).

I know I’m not alone in this “date night envy.” Many families have kids who are considered to be “medically complex.” So I can assume they can empathize with those fleeting moments where we are truly envious of our neighbors or family members who take carefree nights away, staycations just because, and are able to drop their kids at Grandma’s for the weekend. This is not our reality. When we go out, very specific arrangements must be made, trainings on technology must be done, and constant communication must be maintained in case anything were to go wrong.

Please don’t get me wrong, I would not change my life for anything. Our daughter is such an incredible blessing and an image of strength and perseverance. I am truly in awe of her resilience and positive attitude. There are times, however, when I feel the “date night envy” take hold, and I can begin to self loathe. I am only human, but what I have learned is that this is such a small moment in time. I know that one day my daughter will be able to care for herself and she will no longer need me to be her pancreas (though I will always worry). At that time, I am sure my husband and I can double down on the date nights that type 1 has taken from us. For now, watching a show on the couch after the kids go to bed is our way to connect. And that’s okay.

Type 1 diabetes is hard and all consuming, but it has created an intense bond within our family that I wouldn’t trade for anything… even a carefree date night.

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This Is When Everything Changed For My Daughter

12 years ago, 7 pounds of perfection was placed in my shaky hands. I didn’t know what I was doing but looking into that baby’s eyes I knew I’d do anything for that sweet girl looking back at me. I was but a baby myself. And whether I was brave or naïve, I didn’t hover. I parented with care, but not caution.

I took her hand in mine and for a season we grew together. I nursed her. She nourished me. I taught her to walk and she helped me find my feet. We shared laughter, ice cream cones and moments. We made memories. As she grew, I showed her what life was and she in turn showed me what it was all about.

Then came the season it all changed.

Her body, the one I gave her, attacked her brain. And overnight the life we’d built together was gone. She seized so hard and so long I thought we’d lost her. Her eyes were vacant, she couldn’t speak and a feeding tube nourished her. Helpless as I felt and as weak as she looked, she held on. And I looked into her eyes, as I’d done so many times before, and promised I’d do anything to keep her safe.

She left the hospital immune deficient, physically weak and experiencing seizures at every turn. I left traumatized. Afraid of seeing death through her eyes once more. For a final time. And, again, with a mix of naivety and bravery I vowed to keep her safe.

I tried. I removed extracurricular activities and had a tutor work with her at home for school. She visited with friends on FaceTime, but seldom face to face. She wore a mask to her outpatient therapies five days a week, and even around her brothers. And as it turns out, it still wasn’t enough. I took her out for her birthday to a low key “princess tea.” I called ahead to ask about the presence of lights and sound and sure the menu was gluten free. And with a mask for protection and noise cancelling headphones she met Belle and Moana. Then, a little girl twirled by in light up shoes. And my girl seized. And seized. Until it took her breath away. And for the second time I carried a limp, lifeless daughter through the ER doors.

The shoes caused the seizure. But it could have been anything. Her medication levels were off, ever so slightly. Insurance had delayed treatment and she was “susceptible.” And she had a hint of a cold. It was the perfect storm. And it struck. Again, changing the season.

She spent just a week in ICU that time. Once they stopped the seizures her breathing normalized. And as they pumped chemo through her veins, targeting the b cells attacking her brain, light returned to her eyes.

But this time I didn’t take her home to a bubble. Because the fear I felt changed me. It reminded me how fragile life was and how much she deserved to live it. Because as she stared death down, all I could think is how much she hadn’t done. And I realized her last memory, whenever it may be, shouldn’t be one of captivity.

For most parents, this is natural. We strive to launch our children into the world. With Gracie, it was more complicated. Because letting her live meant risking her life. And that fought against my only instinct as a mama, which is to keep her safe.

But that’s the crux of parenting a medically fragile child. Your desire to protect them is juxtaposed with their desire for life. And it feels incompatible.

Your heart says, “Safety first.”

Theirs says, “Let me live.”

And in the end you must meet in the middle. Because though a child may be sick, they’re alive. And they deserve to live. And life doesn’t always take place between four safe walls. So, if that’s all a child sees, they’re not living. And if they don’t live, they’ll never know what we beg them to fight to live for.

I want my girl to have forever. And I’m going to fight with all I have for her to see it. But now, more than ever, I know the importance of giving her today. And that will never happen if I’m into the “what if’s” tomorrow holds.

So this season we’re weathering the storms. We hunker down when it rains, and we bask in the sun. Because though she fights a relentless disease, it will not take her childhood.

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My Son Has Oppositional Defiant Disorder And It Sucks

Have you ever heard of Oppositional Defiant Disorder? Yeah, neither had I until I was slapped in the face by it. Okay, not literally slapped, but its effects make you feel like you’ve been sucker punched.

First of all, a disclaimer. I love my son more than anything in the world. He is the syrup to my pancakes. The sprinkles on my ice cream. He’s the light of my life. But we have a very difficult time getting along right now.

It all started pretty simply. A disagreement over laundry. I told him to put it away. He said no. I asked again; another no. There was complete and utter defiance in his tone. This started the first true battle of wills. He wasn’t going to put that laundry away and I wasn’t backing down. We were at a total standstill.

It went from a minor disagreement to a full-blown meltdown. How was this happening? I’m the parent, he’s the child. I tell him to do something, he does it. Except that wasn’t happening at all. Finally I’m yelling out of frustration, he’s crying and the laundry is still in the basket. I walked away and ultimately, he won. Shit!

I thought it was a fluke. He was just having a bad day. Surely it was his age and he was asserting his independence. Yeah, no. It started popping up all the time.

It could’ve been what we were having for dinner, the wrong show on TV, or losing at a video game. He would unleash his rage and immediately start an argument; most of the time, with me. Kids with ODD like to choose a target, and I’m his. In his mind I have wronged him somehow, and he’s going to exact his revenge by fighting with me.

It often started with him telling me that I don’t care about him and quickly morphed into “You hate me and I hate you!” “You don’t love me and I don’t love you!” “I want a new family!” It stung when he told me he hated me. Deep down I know he doesn’t, but he also knows that it bothers me. Sometimes it would be fast, other times it could go on all day. He would reroute our day back to the triggering moment and we were at it again.

I was doing everything in my power not to stay calm, but damn, it’s really hard. When you’re called an evil witch, you just want to slap someone senseless and scream, but I have learned to breathe deeply and excuse myself.

It got so out of control that I knew it was time to seek help. He is treated for ADHD and I started to explain to his doctor what was going on. She immediately said, “This is classic ODD,” and began to explain it to me. Irritability, check. Anger, check. Arguing, double check. Defiance, yep that one too. Finally, a diagnosis and some suggestions on what to do.

Hunter Johnson/StockSnap

Just because we know it’s ODD doesn’t mean it’s gotten better. It just means I know what to call it. There are still plenty of days that I don’t want to be around him. He still pushes us around and tries to have it all his way. But the difference now is that I have learned to walk away. I am constantly trying not to engage him and swallow my words. God bless America, it’s so hard, but I’m doing it.

Here’s the bottom line. ODD sucks, but it’s not terminal. We’re pretty damn fortunate. At the end of the day, I have a smart, funny and talented kid who lives to challenge his mother. He’ll make a great attorney someday. I don’t hate him, and he doesn’t hate me. They are just words and while those words hurt, I know it’s just frustration. I don’t want him to join a new family. I want him to be happy.

I have to remind myself that he didn’t choose to be this way. His mind is just wired a little differently. I don’t think anyone wakes up and thinks, “I’m going to spend my entire day pissed off and ready to fight. Bring on the frustration, rage and battles.”

Together we are learning to work through our feelings and to treat each other better. He is doing his best to calm himself down and he is making headway. Some days are harder than others, but I am up for this challenge.

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27 Places To Visit In Florida That Really Shine For A Special Needs Family

packing for family trip

Florida is one of the best places to visit if your family is looking for a little sunshine and a lot of fun. As parents, we want our vacation to be an enjoyable experience for the whole family. So when it comes to planning a vacation as a special needs family, we go the extra mile to make sure there’s a little something for everyone, especially our little people with special needs.

Here are 27 amazing places to visit in Florida that are perfect for special needs families.

Orlando

1. Walt Disney World

We love Disney for many reasons, but especially because they offer a Disability Access Service card that can be picked up at guest services. This card helps visitors with disabilities by offering shorter wait times and shaded lineup areas. Disney also offers break areas, companion restrooms, and awesome accommodations for guests with food allergies.

2. Aquatica

Aquatica is a special needs-friendly water park. In fact, it’s the first water park in the world to be designated a Certified Autism Center. Aquatica even offers a Park Sensory Guide to assist special needs families with planning the perfect trip.

Winter Park

3. LEGOLAND Florida

Kids love LEGO, and LEGOLAND loves kids. Using the LEGOLAND Hero Pass, guests with disabilities can board their first ride immediately, with the opportunity to reserve ride times at other attractions later in the day

Destin

4. Bright Horizons Diving

Bright Horizons specializes in adaptive scuba diving lessons for people on the autism spectrum or with other disabilities. They offer one-on-one swimming lessons in a calm, supportive environment, and encourage families to get involved too.

5. Alaqua Animal Refuge

Alaqua Animal Refuge is a non-profit animal sanctuary located on a 10-acre farm. They offer guided tours of the farm, which include horses, donkeys, goats, cows, and other animals.

6. Emerald Coast Science Center

The hands-on interactive and educational exhibits make Emerald Coast Science Center a must-visit destination. They offer everything from animal exhibits to robots with the latest technology.

Fort Lauderdale

7. Young at Art

Young at Art is a children’s museum that offers Sensory Sunday every second Sunday of the month. These special hours are just for families with autism or other sensory sensitivities and allow them to explore exhibits in a calm environment. Art activities even offer adaptive art tools.

8. Flamingo Gardens

Flamingo Gardens is so much more than just flamingos (although we think flamingos are seriously cool!). This botanical garden and wildlife sanctuary offers butterfly and hummingbird gardens, a black bear habitat, and other exciting wildlife encounters.

9. We Rock the Spectrum

This gym is for kids of all abilities, promoting social interaction and communication in a safe, nurturing, and inclusive environment. They offer open gym times, arts and crafts as well as Mommy and Me creative dance and movement classes.

Jacksonville

10. H2Om Float

If you’re looking for a different kind of calming experience for your loved one on the spectrum, try float therapy. The float pools are warmed to body temperature and the added salt allows visitors to float effortlessly. (The pools have only 10 inches of water in them.) The addition of lights and music makes it a relaxing, tranquil experience.

11. Bravoz

At first glance, Bravoz may seem like your typical trampoline park, with a Ninja warrior course, mini-bowling, laser tag, climbing walls, and an arcade, but it’s the sensory-friendly sessions that set Bravoz apart. With music turned off and distractions dialed down, the facility transforms into an amazingly sensory-friendly environment.

12. Sensory Towne

If you’re looking for open play times, swings, and slides for kids and caregivers alike, check out Sensory Towne in Jacksonville. They also offer art classes, dance classes, and kids’ yoga.

Miami

13. Shake-A-Leg

Therapeutic sailing, swimming, and kayaking are just some of the amazing activities offered by Shake-A-Leg. This not-for-profit works with children and adults with physical and developmental challenges.

14. Island Dolphin Care

Island Dolphin Care offers dolphin therapy programs for children with special needs and their families. Whether you’re looking for a session in the water or from land, they have a session to meet your family’s needs.

15. Autism on the Seas

Autism on the Seas offers staff-assisted cruises for special needs families. They accommodate numerous special needs including autism, Asperger syndrome, Tourette syndrome, cerebral palsy, and many other developmental disabilities.

Pensacola

16. National Naval Aviation Museum

National Naval Aviation Museum offers more than 250 restored aircraft from World War I to present day. You can take pictures in the cockpits and check out all the historic memorabilia or enjoy the Kitty Hawk playground and onsite cafe.

17. Gulfarium Marine Adventure Park

This amazing marine adventure park has plenty of marine life, offers lots of shade for those with special needs, and encourages guests with special diets or food allergies to bring their own food.

18. Sam’s Surf City

Sometimes you just need a lazy day at the pool, or perhaps on the lazy river. Sam’s Surf City boasts a 750-foot endless river, seven pools, and 12 large water slides, for those days you’re looking to make a splash.

Peter W. Cross

Tampa

19. Dinosaur World

Experience hundreds of life-sized dinosaurs at this laid-back family park. Food allergies and special diets aren’t an issue at Dinosaur World because you can bring your own cooler. Massive oak trees offer plenty of shade between exhibits. There’s also a dinosaur-themed playground.

20. Great Explorations Children’s Museum

Staff members at Great Explorations receive special training to increase awareness of the needs of visitors on the autism spectrum. They offer a program once a month for children with special needs and their families.

21. ZooTampa

This zoo goes above and beyond to make sure visitors on the spectrum have an enjoyable experience. They offer visual aids at the front gate that can be borrowed during your visit, and an autism-friendly version of their zoo map, which includes sensory-friendly tips for planning your visit.

St. Petersburg

22. Tradewinds Island Resort

If you’re looking for a special-needs resort, Tradewinds Island Resort is the place for your family. All the fun of the beach but with resort staff who are specially trained to meet the needs of your family. From in-room safety kits to gluten-free menu options, they’re sensitive to the needs of each guest.

23. Fort De Soto Park

Fort De Soto Park offers beautiful beaches, amazing cuisine, and a rich history. Enjoy a day on the nature trails or rent a couple of canoes and take in all the islands have to offer.

24. LOCALE Market

If your family enjoys food, LOCALE Market is a great option. With an amazing array of dining choices and even better conversation, you won’t be disappointed.

Daytona Beach

25. Lighthouse Point Park

Lighthouse Point Park , on 52 acres in Central Florida, features fishing, nature trails, an observation deck and tower, swimming, and pavilions. There’s plenty of wildlife to be seen along the trails, including tortoises, armadillos, and in the water nearby, even dolphins!

26. Marine Science Center

If you’re in the market for a hands-on experience, Marine Science Center is a child-friendly aquatic museum with a stingray touch pool and living reef aquarium. And who doesn’t want to touch a stingray?

27. Daytona International Speedway

If your family has a need for speed, Daytona International Speedway will get you going. The track offers 30-minute tours that are perfect for families.

Now that you have a few options, where are you heading? Maybe you should just give this list to the kids and let them decide. No matter where your family decides to go, everyone is sure to have an amazing time on your next getaway to Florida!

VISIT FLORIDA is Florida’s official tourism corporation, serving as the official source for travel planning to visitors across the globe. Check out the VISIT FLORIDA website to learn more and start planning the vacation your family will be talking about for years to come.

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