When I Thought the Man in Supercuts Was Judging My Special Needs Family

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It was while getting my daughter Vivian’s haircut that a total stranger — without a saying a word — let me know he understood I was doing my very best.

Vivian shocked me when she said she wanted to cut her hair short — really short. I was game because while I love her long hair, it’s very thin and there’s a lot of it. Sadly, since I wasn’t planning on anything more than a trim, I didn’t have enough battery power on my cellphone to keep my other daughter, Caroline, entertained throughout this experience. Once the phone died, which happened before Vivian’s haircut even got started, Caroline was all over the place. She tried to leave, she climbed on the shampoo chair, laid on the floor and made a snow angel, played with a hair dryer not in use and tried to use the cellphones of three other people. Girlfriend was relentless.

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Vivian, for her part, decided about halfway through the haircut that she looked like a boy and started to regret her decision. So there I was corralling Caroline and offering a pep talk to Vivian. I was trying hard to be the mom both of the ladies needed at the same time, so I had to be two totally different versions of me.

A young man and his son, who was about Caroline’s age, came in for haircuts. They were were in and out before Vivian’s haircut was complete. However, they were there long enough to see the chaos the Buzzard Ladies had brought to Supercuts. At one point I told Vivian, “You need to take it down three notches. Our family is responsible for 90 percent of the noise and 100 percent of the chaos in here.”

When Vivian’s hair was about halfway done, one of the other hairdressers asked if Vivian had received a deep conditioning. I said no because we decided to go with a short cut instead. I thought it was weird she was asking but figured she needed to close out our ticket for some reason.

Later, when they told me my bill had been paid for by the young man, my jaw dropped. I didn’t ask why. I was speechless. I was convinced he had been silently judging me while he and his son waited for their haircuts. And it turned out maybe he was, but not in the way I had imagined.

While we were at Supercuts, I didn’t apologize for Caroline’s behavior or explain she has autism. I was too tired. But between our interactions, the man who paid for Vivian’s haircut could see that despite how disruptive our family was, we really were trying to do the best we could. I thank him for not harshly judging Caroline, Vivian or my parenting. His willingness to look past our loud, active presence allowed him to see that even families who have kids with special needs sometimes need to run errands.

His silent generosity reminded me some parents offer their support to other parents without words but with gentle gestures that say, “I have been there, too. You will make it through this day.”

Thanks for the haircut and the pick-me-up.

Follow this journey on Failure to Thrive or Ability to Overcome?

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I’m a Little Lost as a Special Needs Parent

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It’s been almost two years since my husband and I started our journey as parents to a child with special needs. Back then, we weren’t even using the words “special needs.” We just knew our baby girl was delayed and were hopeful she would “catch up.” Eleven months of blood work, MRIs, EEGs, ERGs, genetic tests and lots of therapy later, our daughter was finally diagnosed with a rare genetic mutation. The good news: We had an answer. She would always be delayed, but she would make progress. The bad news: It posed about a thousand more questions. Questions that, to this day, are still largely unanswered because there are only a handful of others with our daughter’s same mutation.

In my search for answers, I’ve eagerly devoured many articles written by other parents of children with special needs. Usually, I come away from these with a feeling of genuine comfort. But sometimes the doubt creeps in. How do these people have the answers and I don’t? I’m a Virgo. I crave order and organization, and having so many unknowns gives me anxiety. 

Here’s the truth I want to share with you: I want to be the best possible parent to my daughter that I can be, and I don’t know how yet.

And that’s OK. Here’s why.

No one has invented clones or robots yet. There are simply not enough hours in the day to sort out these complicated feelings. My husband and I work full-time and, in addition to our daughter with special needs, we have a very spirited first-grader to raise. Forget about “me” time. Forget about hobbies. It’s work, eat, family time, clean up, more work. On top of that, there is an unending pile of research, paperwork and emails relating to my daughter’s rare genetic disorder. 

Science is hard. Parenting a child with special needs forces you to learn a whole new language overnight. For us, it’s been a crash course in genetics. And if you’re like me and don’t easily understand genetics or complex medical terms, you may find yourself reading the same things over and over again. Every couple of months, I have to re-learn what all the terms surrounding my daughter’s rare genetic mutation mean. 

You never know when the grief is going to hit you. And it’s surprising when it doesn’t. One day, while waiting for my husband and daughter to come down a large slide, a little girl with the exact same brown ringlets as my daughter slid down. For a brief second, my heart caught in my throat as I thought my husband pushed our daughter down this giant slide by herself. The second passed, and I realized she was someone else’s daughter. She ran away, and my husband and daughter slid down. We watched this typical 2-year-old for a moment, marveled at the similarity of her curls and then didn’t give the matter a second thought. 

I’m not sure why coming face to face with the typical version of our daughter didn’t bother us, but a recent barrage of Facebook updates of younger babies surpassing our daughter in milestones have been bumming me out. “It is what it is” has become our go-to mantra.

“Comparison is the thief of joy.” I’ve encountered many parents who seem like they have it all together, or they know about something I’ve never heard of before. I admit it sometimes makes me panic. How can it be there are still things I don’t know when I spend almost every free moment scouring my Facebook groups or networking with other families? I have to remind myself, the people who seem like they have it all together probably have been doing this longer, have had more therapy or maybe I just happened to encounter them on a really good day. 

I’m still fairly new to this journey, and it’s important I cut myself some slack. 

It’s OK if I feel like my daughter’s best advocate one day, and the next day I want to crawl under the covers to hide. 

It’s OK if my to-do list is a mile long, and my house is perpetually messy (that one’s for you, hubby!). 

It’s OK if I don’t know what I’m doing yet.

All that matters is I’m trying, so I’ll get there.

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Woman Denied Travel Insurance Claim After Being Hospitalized for Depression

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A woman from Australia has taken legal action against an insurance company she claims discriminated against her after she canceled a trip due to mental illness. The hearings began on Tuesday and mark the first time a claim of this nature was taken to Australian courts, according to ABC’s 7.30.

The incident happened four years ago when Ella Ingram, then 17, was in her last year of school at Melbourne Girls’ College, the Herald Sun reported. She had plans to study abroad in New York when she started experiencing severe depression and suicidal thoughts. After two weeks of hospitalization, her psychiatrist recommended she cancel her trip, so she did. 

When she received a letter denying her insurance claim from QBE Insurance, which provided coverage for her trip, she was shocked.

“For one of the first times, it made me feel really bad and really ashamed to have depression,” Ingram told the Herald Sun.

QBE has a complete exemption of mental health issues in its cancellation policy, even when it’s not a pre-existing condition. ABC’s 7.30 reported the company plans to argue it would suffer “commercial hardship” if it covered mental illness, due to the number of people who experience it.

This is not uncommon — most travel insurance companies don’t cover trip cancelation due to mental health issues, including anxiety, depression and panic attacks. QBE said mental illness exclusion policy is “standard industry practice,” according the Herald Sun.

After she canceled a trip because of her mental illness, Heather, a verified user on Consumer Reports from Westland, Michigan, had an insurance claim denied by Allianz Travel, an American company recently ranked #1 in travel insurance by Consumer Reports.

She wrote:

I had a flight planned and was hospitalized the day before I was set to take off due to mental illness. I called to submit a claim and spoke with a pleasant woman. She asked me to explain the situation, which I did, and said that I would be covered and that I just needed to send in the required documentation. I sent everything asked for and more (which cost me $28 in fax fees at FedEx) but found out about a week or two later that my claim had been denied because mental illness was not covered under my policy.

Although under the Mental Health Parity Act and Affordable Care Act health insurance companies are required to provide mental health coverage, travel insurance is exempt. A typical travel insurance plan does cover cancellations due to injury, illness and hospitalization.

Attorney Ingrid Evans, from The Evans Law Firm in San Francisco, California, said insurance companies that exclude mental health-related claims are just looking for an excuse to deny coverage.

“Insurance companies are in the business of making money, but it’s flat our wrong to use mental health as an excuse,” she told The Mighty. “It’s absolute discrimination.”

Her firm is currently working on a few cases that deal with mental health discrimination and insurance.

Have you ever had an insurance claim denied for mental health reasons? Tell us about it in the comments below. 

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Why Top Mental Health Groups Are Trying to Stop This ‘Modern Family’ Episode

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Some of the biggest mental health organizations are putting pressure on ABC-TV to drop a Halloween episode of “Modern Family,” scheduled to re-air this Wednesday. Advocates are arguing it stigmatizes people with mental illness.

In the episode, called “AwesomeLand,” one of the main characters, Claire, transforms her home into a “scary inane asylum.” Her daughter, Alex, is strapped into a hospital bed while her son, Luke, wears a straightjacket. When her oldest daughter, Haley, comes out in her “sexy” hospital gown, she says, “Sexy people go crazy too, you know. Read a ‘People’ magazine.”

Mental illness is not a joke. Re-airing an episode that uses an ‘insane asylum’ theme and stereotypes of people living with mental illness as a vehicle for humor is a cruel Halloween trick on the 1 in 5 Americans who experience mental health problems in any given year,” reads a letter addressed to Paul Lee, President of ABC Entertainment Group.

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source: NAMICommunicate

The letter has been signed by the American Psychiatric Association, the Bazelon Center on Mental Health Law, the Depression and Bipolar Support AllianceMental Health America, the National Alliance on Mental Illness (NAMI) and the New York Association of Psychiatric Rehabilitation Services, Inc.

“The episode sends a message that ABC does not consider people living with mental illness to truly be part of its modern family or vision,” Mary Giliberti, executive director of the NAMI, said in a statement released by the organization this week. “It is a profound disappointment that a show that has been applauded for inclusivity now chooses to dismiss concerns from part of the disability community.”

Deborah Geesling, whose son has schizoaffective disorder, told The Mighty in an email she finds the episode “appalling.”

“The only thing that rivals the pain of watching our adult son succumb to the devastating effects of a serious mental illness has been the rude awakening to a system of care that is abysmal,” she said. “The state of our mental illness system still remains mostly unknown to the majority of our country. For a popular television network to air a show that intensifies the pain and ignorance… I can hardly find the words to express my anger.”

Others have taken to Twitter using the hashtag #unmodernfamily to speak out against the episode.

NAMI is encouraging viewers who want to join the conversation to use the hashtag #unmodernfamily, and reach out to ABC here.

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What It’s Like for Me to Live With Sensory Processing Disorder

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I hear a sound and plug my ears so hard it hurts, but I can still hear the noise. So I cry.

I pull the shirt over my head and try to keep it on as long as possible, but I rip it off and hug myself. So I lie there on the ground naked.

I put my feet through the holes of my pants, but I wiggle out of them before I get halfway. So I put on shorts even though it’s snowing.

I sit in the front seat on the bus, but when someone sits behind me, I move to the back. So I sit alone with my head in my knees.

I go to my friend’s house for dinner and they say I can look in their fridge for something to eat, but I don’t like any of it. So I convince them I’m not hungry.

I’m not like the others around me, but I remain full of confidence. So I’m happy despite my struggles.

I learn more the older I get, but it’s OK if I fall down sometimes. So I’m getting stronger every day.

My mother tells me I never stopped crying as a baby. As I grew up, I wore snow boots in the summer and the same dress every day to preschool and kindergarten. I wasn’t like the other kids. Eventually I was diagnosed with sensory processing disorder (SPD), tactile dysfunction and obsessive compulsive disorder. I tried a collection of medications and an even longer list of therapies. Now I’m a junior in high school, and my problems haven’t gone away, but I’ve learned to cope better. There are certain triggers that set off each person with SPD. The main ones for me are clothing and many noises. Someone in the room whistling can set me over the edge, and if someone paid me to wear jeans, I wouldn’t do it. The tricky part is the triggers can change.

Many people still don’t know about SPD. Even if you ask someone who has it, they might have trouble explaining it. I always tell people, it’s like when my brain receives sensory signals, and instead of giving them a green light or thumbs up, my brain says “Stop, no, this is bad.” But SPD exists, even if people don’t know about it, and it doesn’t just affect young children — it affects people of all ages and genders. Know that when we throw tantrums or seem to act inappropriately for our age, it’s not because we’re immature. We’re experiencing sensory overload.

But unless you have SPD, I don’t believe you can ever truly understand. Sometimes our friends and family might try to empathize and say, “Oh yeah, when people chew with their mouth open that really bugs me too.” But the truth is, they don’t know or feel what we do. It’s just not the same, and that’s OK. We appreciate any love and support we get. If you know someone with SPD, support them, be there for them and please be patient with them.

If you’re living with sensory processing disorder, know you are not alone. At times it can feel like we are, but this story is proof you aren’t. Find your coping methods and utilize them. If you’re in school, consider an IEP or a 504 plan. If you’re out of school, consider confiding in a coworker who can be there to help during a sensory overload situation. Create a area of your house where you can go and relax when things get tough. Stash a pair of earplugs or stress ball in your purse. Don’t give up; the obstacles you face are not impossible to beat. This is not a battle you should have to fight, but your only choices are to fight it or to let it control your life.

In April, I’ll be 18. Officially an adult with SPD. I’m thankful for the community that has started to build, and that I’ll join. I have sensory processing disorder, and I’m stronger because of it.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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Why I’m No Longer Using the Word Grief When I Talk About Autism

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Ever have a life event that kind of smacks you upside the head and makes you realize you were really wrong about a certain way you viewed something? Two months ago I attended a wake for a child. I still think about that little girl and her family daily. The experience taught me in a way I didn’t expect about how I view autism.

I can no longer say I know grief. I do not. Not by a long shot. I know I have written about finding out your child’s autism is a grieving process. I know I’ve read similar posts talking about mourning the child you thought you had only to discover autism “took the life you thought you had away.” No it didn’t. Not at all. I know this because although my child is autistic, he is here. He is making a mess. He is playing with toys. He is singing the flipping “Bird Is the Word” song for the 739th time today.

He will need several prompts to finish chewing his food fully so he doesn’t gag. He will need reminding not to tease the dogs. He will be scared if he sees me so much as open the kitchen cabinet with the blender in it.

But he is here. I can laugh and sing with him. I can high-five him passing in the hall. I can sneak into his room at night after coming home from a funeral home and kiss the top of his head as he sleeps.

So yeah, life isn’t what I had planned, but no life is. Seriously, the life you see others living, the one you envy — even to them it’s not what they expected. Both good and bad. Maybe what I feel at times is self-pity, frustration or disappointment. Perhaps a grand combination of all of the above. For me, I know it is not grief. I choose not to use that word anymore in regards to autism and accepting my child’s diagnosis. It’s not a grieving process. It’s an acceptance process.

It’s an insult to compare it to losing a child — one I won’t do anymore. Or “mourning” because he is still here. Yes, it’s more work on my plate than I ever expected or even wanted. I’m grateful for it because some parents don’t have that luxury of complaining because they actually lost and buried a child. They are the ones who have the right to grieve, to mourn for a life they can no longer watch and help develop.

I’m not saying this anymore. I’m not asking or declaring you to do the same. All I ask you to do is hear me out. Is your child still here? Then you currently have more riches in your life than others do. I’m not telling you not to be sad or angry or frustrated with your situation. It would be utter madness for me to even suggest it. Hell, you don’t even have to like it sometimes. I just know what I felt when I hugged a mother recently who had been preparing herself to accept a lifetime of medical challenges for her daughter only to now greet us at her child’s wake at a funeral home.

I’m not declaring a right or wrong for anyone but me. Maybe you’ll agree or maybe you won’t. I just feel it’s important to acknowledge when I was wrong and how I plan to change it.

Follow this journey on Autism With a Side of Fries.

Lead photo source: Thinkstock Images

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