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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Why My Daughter Learning To Walk Was So Incredible

I hate running.  I didn’t mind it so much when I played soccer and I forgot I was technically running, but I really despise it when there is nothing to do but run. I try to listen to music but I inevitably find myself stopping on the side of the road, choreographing, and singing to show tunes instead of increasing my heart rate. I should see someone for my unresolved Broadway dreams. I tried in college. It was a good way to counteract all the Wisconsin cheese bread I was eating. My roommate would take me for a spin.

“Just to the mailbox, Leah. You can do it,” she would cheer, her red hair flying in front of me. “You can do it.”

“I mean, we could… or we could stop at the Union and get some ice cream first?”

Running really wasn’t my calling. Which is why it was so surprising one afternoon when I said to my husband randomly, “I will be right back, I need to to go outside.” I threw on a pair of sneakers and temporarily gave myself a time-out from adulting. I just started walking down the street. I resembled an Edward Scissorhands-like figure bumbling down the center of the road, arms extended, no phone, no keys, no sports bra. And because my brain thinks in stories, I found myself Forrest Gump style, suddenly running. I wasn’t tired. I wasn’t bored. I was outside — by myself.

When I clocked it later, I ran more than two miles. And there was a hill. Yes, I was impressed too. I tried to recreate it later that week, but realized the first time was simply an aberration as I just looked at the hill, turned around, and walked home belting “Climb Every Mountain.”

When I returned home, I tried to identify just what it was I was running from. And there it sat — the walker. The fire-engine red, metal contraption I had picked up a month ago to help my daughter learn to walk. She had just received a rare diagnosis of cri-du-chat syndrome, a disorder that is found in 1 in 50,000 births. We aren’t sure if she will ever walk or talk.

At first, I was excited about bringing it home; this would be the tool to help prove the geneticist wrong. The knee height orthotics were beginning to allow her to pull up, but Jordan’s body could not seem to handle its own weight to maintain walking. This contraption was the great solution. However, each time she saw it, she would cry hysterically. I knew I was supposed to push her, but I also knew we both preferred our kitchen dance parties. My husband was much better at working with Jordan; I focused my attention on reorganizing her therapy schedule. I would watch the neighborhood children, half her age, run through the backyard while I measured the distance of our kitchen to see if it could accommodate a wheelchair.

This milestone was far too painful for me. I was not the only one who was frustrated. Our fearless therapists were pulling out all the stops to get her to try. Was her hypotonia not allowing her body to hold her weight because she has so much low tone? Did she cognitively comprehend the motor planning required to take a step? Was her constant wailing during physical therapy a result of fatigue, pain, or frustration? Jordan spent hours with her team, supporting her with hula hoops, banging on drums, and supporting her body with weighted tools.

Courtesy of Leah Moore

On one particularly difficult afternoon, our family trainer came to visit with her dog, Fozzie. The team was interested in trying a new technique and recognized Jordan’s fascination with Fozzie. She was drawn to his fluffy fur and thought he was utterly delightful. It helped that Fozzie was trained and knew exactly what girls like Jordan needed: motivation. The desire to pet Fozzie was enough to get Jordan moving.

Jordan taking her first supported steps will always be for me what An Affair To Remember is for my mother: it doesn’t matter what I am doing, I will always tear up when I think about that day when my two-and-a-half-year-old daughter, who wasn’t supposed to walk, started walking.

A few weeks later, I found myself in a quiet moment.

“I will be right back, I need to to go outside,” I called to my husband.

I strolled down the sidewalk. My thoughts were inundated with pride for my daughter. She checked off the first box on her “won’t be able to do” list. I started to pick up my pace.

If my daughter can learn to walk, I surely can make it to the mailbox.

Courtesy of Leah Moore

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As A Parent Of A Chronically Ill Child, I Wish People Would Stop Saying This

There have been so many situations in my life where, on reflection, I wish I had said something else; or, with hindsight, I realized that what I thought was an empathic comment actually missed the mark. Because the truth is, unless you’ve been in a situation, and lived it, it’s so tough to be able to imagine the reality of it.

As Oprah Winfrey said, “The struggle of my life created empathy – I could relate.” Experience equips us. Conversations with others having those experiences also help: hearing what has helped to them during a difficult time, or – as is sometimes the case – the very opposite.

Don’t get me wrong… sometimes the corkers people come out with are what gives the light relief in a moment of darkness: “They said WHAT?!! You. Are. Joking!”

But, despite the good intentions, if you’re in a vulnerable place, a poorly-judged comment can also nudge you a little further down a dark slope, and unfortunately the person’s original intent isn’t going to be visible to you when you’re in the shadow.

I’ve been on a pretty slippy parenting path since my twins (one of whom has a life-threatening incurable medical condition) arrived nearly 5 years ago. And I have to say, I’ve heard some absolute crackers in that time! So I thought I’d take my personal experience, looking from the inside out of this particular bubble, and compile a short list of some of the gems that have been said to me, that I would advise you to avoid.

1. “But he doesn’t look sick?”

Ummm, he is…? I would love for ALL the doctors and tests to be wrong, but they’re not, and I don’t even know how to reply to this question: “Erm, I’m not making it up…?” My energy is way too low for this kind of unconstructive conversation.

2. “They might grow out of it.”

Are you a renowned specialist in this exact area? I get that you’re trying to be hopeful, but, again, this conversation – with me trying to convince you I’m not naïve to listen to health professionals – is only going to mentally and emotionally exhaust me.

3. “Did you not breastfeed him?”

Just … no. Don’t do this.

4. “At least you have him for a while.”

This has been said to me TWICE. Two people thought that saying this to me would be a positive thing to say. PLEASE don’t flippantly mention the possibility of a chronically ill child’s death, a thought the parent will already be haunted – plagued – by.

5. Please don’t bring up God.

Honestly, I don’t want to be told how he moves in mysterious ways, and only gives challenges to those strong enough to deal with them, and on and on. This will make me feel all the rage. Parents of kids with additional needs are strong because they weren’t given a choice; my child isn’t going through trauma because I have good coping mechanisms that the universe wanted to test.

6. “Oh, my [healthy kid] is just like that too.”

This is a sensitive one: I know you’re trying to relate, and connect, and share your own load, and that you’re probably in a tough place too, because this parenting gig is hard. But, if I’m talking about something my kid’s having to go through that is genuinely extreme, so extreme that it could only be something a chronically ill child would have to suffer through, this just makes me feel that their struggle – and mine – is so off your radar it’s not even on it. I feel so utterly invisible in these moments.

And as for what to do, rather than not do: If you’re hanging with your friend who, on top of all the bonkers stuff that goes with parenting, has another mammoth child-related layer on top, please listen. You don’t have to question, or try to think of something to make her feel better, or have a response, or insightful wisdom — just be the ears your friend desperately needs. Simply letting her know you’re there if she needs you, and that you see her, is worth more than you can ever imagine.

 

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 page is here to help parents survive the tween and teen years (aka, the scariest of them all).

The post As A Parent Of A Chronically Ill Child, I Wish People Would Stop Saying This appeared first on Scary Mommy.

Being A Parent Is Hard — Being A Special Needs Parent Is Harder

Being a parent is hard. Being a special needs parent is harder.

Comparing the two is like comparing apples to oranges. Or monster trucks to Mini Coopers. While they are both “in the same vein” they are really not that much alike when you step back and look at them.

While you worry about which kindergarten teacher your son will have, I have to worry about what kind of classroom my son will have to go in to best meet his needs and abilities.

While you get excited to get your daughter off the school bus every afternoon, I have to make sure there is an aide on the bus so my son doesn’t get bullied and knows when to get off.

While you are busy asking your kid how their day went, I am celebrating the fact that my son can finally tell me how his day went after 6 years of speech therapy.

While you are able to give both of your kids equal attention, my neurotypical child tends to get the short end of the stick because my other child needs more of our attention and has exhausted us.

While you get to make spur of the moment play dates to the local park, I have to have notice of that plan so I can prepare my son and me to go — snacks, talk to him about it before, and an excuse to leave if things don’t work out.

While you enjoy a date night with your husband while the neighborhood high schooler watches your kids, I can only rely on a few trusted caregivers to watch mine because not just anyone can deal with any behaviors that might come up while we are out.

While both of your children get to do typical kid stuff this summer (laugh, swim, go on vacation), I have to worry about if we’ll get to go further than an hour away or be able to swim in a pool without the added safety worries.

While you are attending town soccer practices and boy or girl scout meetings with your child, I am attending IEP meetings and sitting in on yet another evaluation that could change the course of my child’s life.

While you get to talk to other moms about the new local hair salon or place to eat dinner, I have to explain to the rest of the group why my son is walking the perimeter of the playground instead of playing on the climbing apparatus.

While you have to teach your child to be kind, compassionate and to stand up for others, I have to teach my child all of those things and also how to defend himself from bullies that 8 out of 10 times will target him over other kids because of his special needs.

While you get to casually shop at Target and talk to the sweet elderly woman that waves at your son in the cart, I have to explain to her that my son has autism and that he is having a meltdown because the store didn’t have his favorite snack I told him we were going to buy.

While you are out having dinner with your best friend, I will be at home again because my son had a rough day and I just need to be here instead and my needs always come dead last.

While you cry at night sometimes because your kid told you he hated you, I cry at night often because I worry about whether or not I’m doing enough to help my son live his best life.

While you are bragging about the new milestone that you child has hit, I have to explain why my son is almost two years behind in some areas of his development.

While you worry about how much you are going to spend on your daughter’s prom, I have to worry about if my child will ever get asked to go to his.

While you worry about your child getting a good job or going to a good college, I have to worry about if my child will ever be able to hold steady employment or live on his own.

I don’t say these things to make you feel sorry for me or my child. Nor to make it sound like you don’t have hard days as a mother. I am not trying to compare the two or play the “poor me” card. I’m trying to give you insight into what it is like for us special needs parents. We live with these things everyday.

Every. Day.

We will for the rest of our lives. Many of us will see amazing things out of our children in our lifetime, and a great deal of us will learn more compassion and appreciation for these special little people that we were gifted than any other parent on the planet.

But, that doesn’t mean it’s easy. It’s isolating, exhausting, amazing, and inspiring.

My son is my hero. I don’t say that lightly or as some kind of cheesy euphemism. He is my HERO! Nobody has fought as hard as he has to be where he is at, crushed expectations that were placed on him from the time he was born, or opened the hearts of so many people in just the six years he’s been on the planet.

He’s a miniature version of me with boy parts and a special thing called autism. He is doing second grade math and first grade reading while still in kindergarten. He is the best big brother and has brown eyes you can get lost in. He’s my sweetest love. My firstborn little fighter. I love him more than any part of myself and to the sun and back again.

I love him for who he is and for who he is going to be. But, it’s hard. And I’m done trying to explain that to people that will never “get it.”

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How Having A Neurodivergent Child Has Changed My Parenting

My dream of becoming a mom started with baby dolls. I had names picked out and throughout school, I took every child development class I could get my hands on. I read parenting books, babysat neighborhood kids, and even began working on a degree in child development. I was an expert.

In my 20’s, I began to have my children. A few things didn’t go exactly how I planned but it was a smooth road. I breastfed, cloth diapered and made sure they had the recommended tummy time exercise. My oldest daughter was toilet trained at 18 months, we learned our ABC’s, and I applauded as my kids met every goal and milestone on time or earlier. School began and of course they were “A” students with spectacular behavior. I was perfect.

After my divorce, my perfect parenting continued just how I planned until a monkey wrench was thrown into my well oiled machine. I was unexpectedly pregnant. It was a dark time of unemployment, depression and poverty. It was an emotionally draining pregnancy and my planned out life became a mess. We hung on despite it all and a little 5 pound baby boy was born in August. I was scared, but I was a master by this point. I could do this with my eyes closed.

I knew something was wrong at home when his urine was orange, so we immediately went back to the hospital we had just came from. It was discovered that he wasn’t able to suck correctly. We spent a week dealing with a poor performing pancreas and blood sugar checks after every feed but we were able to work around it with special bottles and a state of the art breast pump. It was just a little bump but I could make it work. Pumping did not work however and I was devastated when my son began formula feeding. The changes continued from there and it was just the beginning.

He slowly approached milestones and seemed to have his own set of rules. As he grew from baby to toddler to preschooler, his differences grew. He was the most energetic person I had ever met. He was so energetic that he physically hurt himself from his behavior. He jumped off furniture, knocked books off of shelves and broke countless household items from rough play or pure destruction. As my older children continued to be awarded with Honor Roll and dazzle the crowd, my son failed to reflect my expertise. I didn’t understand. I fell off my parenting high horse and the fall was long, hard and painful. I had gotten it all wrong.

I learned that everything that I had thought to be important was actually irrelevant. My organic breastfeeding days were gone and I had a child that had sensory sensitivities. My concern over vegetables and sugar went out the window as my son resisted eating and would vomit if he didn’t like the flavor. I fed him anything he could tolerate. He was so active that he was physically incapable of sitting down long enough to eat so I resorted to strapping him into his high chair and putting him in front of the TV to eat.

He didn’t play with toys like other children. He smashed through the house like a raging tornado and I was certain would never toilet train. His speech was so distorted that I (his perfect mother) struggled to understand his few words and he was unpredictable around other children and animals. He required constant supervision far more than my other children. Inconsolable meltdowns became normal in our household, both his and mine, and my perfect parenting practices fell apart one after the other.

I was assured by other parents that he was “just a boy” and he would “grow out of it.” But as time went on, more red flags popped up and he continued to struggle to interact well with the world around him. Other children refused to play with him because of his impulsivity and he left a path of exhausted child care providers. He started preschool at 4 and I will never forget the look on his teacher’s face when I picked him up from school on the first day. I decided to take him to a psychiatrist.

The process of testing began as well as therapy and intervention. He began speech at school and his teacher gave him small goals such as sitting on the circle time carpet for 30 seconds. I had always been the parent with the “A” students so I had barely talked to my children’s teachers beyond a conference once a year. Now suddenly, I was talking to a teacher every day.

I had decided years ago that I wouldn’t medicate my children, but after a full school year in preschool with zero progress and a constant 1:1 behavior aide, I knew that we had to do something. We began to explore medication and other treatment options. Our household catered to his needs. We bought a sturdy living room set that could withstand his jumps and he began taking melatonin to help him sleep regularly. I learned to stop taking the lead and instead follow his. I learned to play by his rules.

I learned to stop trying to make him conform and instead, I conformed. The school granted an IEP and he continued working with an aide. I built a strong relationship with his teacher, therapists and psychiatrist. I reached out to local parent support groups and I joined online support groups. I let go and I finally started to learn how to parent the right way.

He is now six and I am learning more each day. He plays with his ears or flaps his hands when he is concentrating and clothing tags are like a cactus. We give transition warnings before any changes are made and he has a full book shelf for his collection of household items. His weighted blanket helps put him to sleep and I am certain that we have watched The Sandlot as a family at least 3,000 times. We are all learning.

Today was an awful morning so I cried on the way to school while his favorite song played on the radio so he couldn’t hear me. His hair hasn’t been brushed in two days and his shirt wasn’t buttoned but today was the first day he buckled his own seat belt. He had ice cream on his face but at least he ate. I’ve grown tired of his favorite song but he smiled when I looked in the rearview mirror. I’m growing.

I never thought I would be the mom to give her child cold hot dogs for breakfast, but here I am. I never thought I would be the mom to not care about academic success, but here I am. I’ve learned what is truly important. I have learned to follow instead of lead. I have learned that it’s not a competition. None of it is. I have learned that my children’s’ success is not the result of my parenting but rather their hard work. I have learned that “success” is different for everyone. I have learned that I really have no idea what I’m doing but I’m just guessing and hoping I made the right choice. I have learned to let go of the reins and to allow my children to grow in their own way, in their own time.

My son is growing more each day. He has a bumpy road ahead of him with different treatment options, accommodations and medical advice. I’m not sure what the future holds for us but I do know that I will be right there with him, on the sidelines, cheering him on as he succeeds in his own race, in his own way. I am so proud of his hard work and determination and I will always be there every step of the way.

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What I Realized When We Received Our Son’s DYRK1A Diagnosis

It’s a day I will never forget, and it seems like just yesterday I got that call.

My day started out like it normally did at 6:30 am, hitting the snooze a handful of times before waking up. I silently walked into the kitchen to make coffee while the boys slept, made breakfast, threw on some gym clothes, and then woke the boys up to get them ready.

A seemingly uneventful morning.

Put the kids in the car and headed to base where our oldest went to VPK, Voluntary Pre-K, from 8:30 am to noon. Usually I went home right after to work out but today I took up an invite to my friend’s house. Which was a decision I am glad I made.

As we were sitting on her black leather couch, sipping coffee, and chatting away while Jaxson played, I got a phone call. It was from an Alabama number so I knew it was our genetics team.

“We got his genetic test results back … we have an answer” she said. I was ecstatic, relieved: we finally had an answer. She then went on to say that the testing revealed that he has what they call DYRK1A Syndrome … wait, what? She continued to say that it was an extremely rare diagnosis, and that they weren’t expecting it to be that at all.

My relief and joy started to fade, and grief began to creep in.

I quickly grabbed a notepad and pen from my friend as she started to describe the features and symptoms of DYRK1A Syndrome. The more I heard the more I feared.

It got to the point that grief completely took over. One might wonder why was I so sad about this diagnosis? I finally got answers! Well, who wishes their child to have a disability? It meant that our child would have many challenges thrown his way as he got older. We were hoping his delays were something he would eventually grow out of as he aged.

We, as parents, want our children to succeed in the world.

I made a follow-up appointment with the genetics team to discuss what they knew, and silently hung up the phone. I am so happy that I took up coffee with my friend that day — that wasn’t a moment to be alone for.

I cried, and I cried.

Went to pick up our oldest from school and made my way back home, where I continued to cry.

I was finally able to get a hold of my husband that evening; he was away for military training at the time. We discussed the results and vowed we would do everything in our power to help our son overcome these obstacles.

To live the best life he could live because his diagnosis doesn’t define him. He can and he will.

Since that day, I’ve met a wonderful new family through our DYRK1A Support group. They are all welcoming and it’s nice to know that there is someone out there who gets it, who truly understands it.

To anyone facing a similar diagnosis, I want to give you some advice: It is okay to have mixed feelings, and most importantly it is okay to seek support.

You are NOT alone.

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