Tracy Smith

@tracy-smith | contributor
Tracy Boyarsky Smith is a former professional turned stay-at-home mom of three boys. Her new job is full of love and advocacy for autism, food allergies, ADHD and other chronic illnesses.
Tracy Smith

Why the Narcan vs Epi-Pen Memes Need to Stop, From an Allergy Mom

Anyone who has access to social media might have seen the memes that compare free Narcan to other diseases or disorders and their subsequent medications. It hits home to me in many ways, but because my children, husband and I suffer from life threatening, anaphylactic allergies, the ones relating it to epinephrine (Epi-Pens) really sting the most (no pun intended). We have struggled over the years to pay for all our Epi-pens. There were years when each one had a copay of $50 each. My sons need one in the nurse’s office, and one in their Epi-bags that stay with them at all times during the day — so that equals four. Don’t forget we need one at home, and one for travel — add four more. Add my two (home and work/travel), and they add up quickly ($600 just in copays). Multiply that times two, because many times the expiration dates go bad and they need to be replaced at least twice a year, and we’re talking some bucks. I haven’t even included using one or one going bad in the heat or cold if they get left out too long.  For a family already living paycheck to paycheck, it’s Epi’s or food some months. Fast forward to having insurance that requires a large deductible and out-of-pocket before anything is covered — over $600 each.  Now try just getting the four for school at $2400. Or, the time when my son developed a new, anaphylactic allergy to milk and I had to use his Epi-pen to save his life (for a secondtime). When we went to the ER, we were informed he had no insurance. Wait, what?! So we desperately needed to replace the Epi-pen we just used at home, but because of an input error on behalf of the state insurance, we had to wait two months before it wasreinstated. We didn’t have the $600+ to replace it. If we hadn’t had the extra one, or the rest of us didn’t have any, what would I have done for my son? How would I have saved his life had something else caused another reaction in the two months it took to reinstate his insurance? So, we are no strangers to the costs of literally life saving medication. When the memes started popping up on Facebook comparing Epi-pens to Narcan, it didn’t surprise me. But it does disappoint me in two main ways. 1. It highlights the ridiculous costs of life saving medications. Which reminds me of all the people choosing between bills, food and meds. It reminds me of bankruptcy and losing your home because you can’t afford medical bills. It reminds me of the disparity between those who have the means to pay for quality care, and those who have lost everything or had nothing to begin with and receive poor care. There is nothing OK or humane about it. 2. It also exemplifies a problem with society today: the lack of caring and compassion about our fellow human beings. Many of the memes imply or state that someone with an addiction is less worthy of receiving life-saving medication. That somehow, the allergic person’s (usually a child, though adults have anaphylactic allergies, too) life is more valuable that the addict. It’s not. They are both equally as valuable. The addict could be the next person to discover a cure for cancer. A mom watching her son overdose desperately wants Narcan as much as a mom watching her son suffocate to death/going into heart failure from anaphylaxis wants Epinephrine. Same love. Same emotions. Same desperate need. So, rather than having these memes that somehow criminalize the addict while vilifying their condition, why can’t we create memes that highlight the real problem: the ridiculous and disproportioned growing cost of medical care. The political money game that is being played with our lives. All of our lives. Everyone is one illness, accident, diagnosis away from losing it all. Trust me when I say it. We should all be joining forces, not pitting against each other. That’s what the powers that be want us to do. If we are so busy fighting the individual battle, we can’t unify to fight the same battle for all. One of the things we can do is stop sharing memes that belittle or unjustly judge someone else’s battle to bring light to our own. There’s enough room for all of them. And, more often than not, it’s the same underlying issue no matter what battle it is. So, from one allergy mom/survivor to the person or family struggling with addiction, I don’t appreciate or condone those memes or attitudes anymore than you do. I have seen and felt what addiction can do. I personally vow to continue to speak up on behalf of all of us, so one day we can all receive the life-saving medications and treatments we all deserve as human beings sharing one world together. We want to hear your story. Become a Mighty contributor here .

Tracy Smith

Why the Narcan vs Epi-Pen Memes Need to Stop, From an Allergy Mom

Anyone who has access to social media might have seen the memes that compare free Narcan to other diseases or disorders and their subsequent medications. It hits home to me in many ways, but because my children, husband and I suffer from life threatening, anaphylactic allergies, the ones relating it to epinephrine (Epi-Pens) really sting the most (no pun intended). We have struggled over the years to pay for all our Epi-pens. There were years when each one had a copay of $50 each. My sons need one in the nurse’s office, and one in their Epi-bags that stay with them at all times during the day — so that equals four. Don’t forget we need one at home, and one for travel — add four more. Add my two (home and work/travel), and they add up quickly ($600 just in copays). Multiply that times two, because many times the expiration dates go bad and they need to be replaced at least twice a year, and we’re talking some bucks. I haven’t even included using one or one going bad in the heat or cold if they get left out too long.  For a family already living paycheck to paycheck, it’s Epi’s or food some months. Fast forward to having insurance that requires a large deductible and out-of-pocket before anything is covered — over $600 each.  Now try just getting the four for school at $2400. Or, the time when my son developed a new, anaphylactic allergy to milk and I had to use his Epi-pen to save his life (for a secondtime). When we went to the ER, we were informed he had no insurance. Wait, what?! So we desperately needed to replace the Epi-pen we just used at home, but because of an input error on behalf of the state insurance, we had to wait two months before it wasreinstated. We didn’t have the $600+ to replace it. If we hadn’t had the extra one, or the rest of us didn’t have any, what would I have done for my son? How would I have saved his life had something else caused another reaction in the two months it took to reinstate his insurance? So, we are no strangers to the costs of literally life saving medication. When the memes started popping up on Facebook comparing Epi-pens to Narcan, it didn’t surprise me. But it does disappoint me in two main ways. 1. It highlights the ridiculous costs of life saving medications. Which reminds me of all the people choosing between bills, food and meds. It reminds me of bankruptcy and losing your home because you can’t afford medical bills. It reminds me of the disparity between those who have the means to pay for quality care, and those who have lost everything or had nothing to begin with and receive poor care. There is nothing OK or humane about it. 2. It also exemplifies a problem with society today: the lack of caring and compassion about our fellow human beings. Many of the memes imply or state that someone with an addiction is less worthy of receiving life-saving medication. That somehow, the allergic person’s (usually a child, though adults have anaphylactic allergies, too) life is more valuable that the addict. It’s not. They are both equally as valuable. The addict could be the next person to discover a cure for cancer. A mom watching her son overdose desperately wants Narcan as much as a mom watching her son suffocate to death/going into heart failure from anaphylaxis wants Epinephrine. Same love. Same emotions. Same desperate need. So, rather than having these memes that somehow criminalize the addict while vilifying their condition, why can’t we create memes that highlight the real problem: the ridiculous and disproportioned growing cost of medical care. The political money game that is being played with our lives. All of our lives. Everyone is one illness, accident, diagnosis away from losing it all. Trust me when I say it. We should all be joining forces, not pitting against each other. That’s what the powers that be want us to do. If we are so busy fighting the individual battle, we can’t unify to fight the same battle for all. One of the things we can do is stop sharing memes that belittle or unjustly judge someone else’s battle to bring light to our own. There’s enough room for all of them. And, more often than not, it’s the same underlying issue no matter what battle it is. So, from one allergy mom/survivor to the person or family struggling with addiction, I don’t appreciate or condone those memes or attitudes anymore than you do. I have seen and felt what addiction can do. I personally vow to continue to speak up on behalf of all of us, so one day we can all receive the life-saving medications and treatments we all deserve as human beings sharing one world together. We want to hear your story. Become a Mighty contributor here .

Community Voices

Are you on the autism spectrum? Need your input. #Autism

Autistic adults, what helped you (and what did not help you) to manage the stress of the Holidays? What should parents of kids on the autism spectrum keep in mind to help their kids when the Holiday "fun" feels overwhelming? Your answers may be used in a post for The Mighty. #AutismSpectrumDisorder #AspergersSyndrome

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Tracy Smith

A Humorous Perspective on Irritable Bowel Syndrome

One of my many illnesses is irritable bowel syndrome, or IBS.  Everyone just says IBS, because, well, let’s be honest, who wants to say, “I have irritable bowel syndrome?!” When you go to work, your boss doesn’t likely have a big sign on him or her that says, “I had diarrhea four times this morning before I left the house and will most likely pee out my anus the rest of the day too.” Similarly, the moms and dads at school pick-up aren’t going to declare they’ve had constipation for a week and feel like they will puke their guts out if they don’t use the bathroom soon. I mean really. It’s hard enough to talk to your doctor about, let alone other people. But, alas, a lot of us struggle.  I have for over 20 years, and have been diagnosed in three states. I’m not really sure why the doctors in these states didn’t take the word of the previous doctor, but they didn’t. It’s not like it’s a hot diagnosis everyone is talking about and dying to have. It’s hard enough to admit, just believe me. That aside, I thought I would talk about some of the relatable issues that arise with IBS. If you have IBS, you will likely relate – so, hopefully through the giggles there will be some “I’m not alone” moments too. When you have that big project at work and the presentation is in 10 minutes, and you’re in the bathroom with severe diarrhea and you think, “Oh my God, not now! Not now!” You pray during the presentation that you don’t start leaking – especially since you wore that slick new ivory power suit. How about that school field trip? The one with limited bathrooms, that’s guaranteed to be on the hottest day of the year. With port-a-potty like bathrooms and toilet paper that is so thin and rough, you can see through it. The kind that gets stuck to the sweat on your skin and makes it impossible to use on a 100 degree days with 200 percent humidity!? When you’re in charge of a bunch of little kids and can’t be in the bathroom alone for 20 minutes?!  There’s no slipping out to a bathroom far, far away on one of these days. Nope. Prayer, starvation, and lots of pre-emptive medication are your only hope. Anxiety can fuel IBS symptoms.  So, the more anxious you are, the more severe the diarrhea. Then you freak out about the diarrhea, which continues to make it worse. How many of you have that Pepto-Bismol bottle in your drawer at work, or in your purse? Or carry around the anti-diarrheal meds in your pocket? I’ve found myself chugging Pepto before a meeting at 8:00 a.m., but now I can’t because I’m allergic to it (lucky me). I should own stock in Tucks. Or, when you cycle into constipation. You are starving so you keep eating and forget that you haven’t gone for, I don’t know, three days or a week or so. All of a sudden you aren’t hungry anymore, and you have a backache that feels like a kidney stone is coming. You can’t wrap your brain around what is happening to your body. Your jeans are tight. You look at food and want to vomit. Am I pregnant? Then it hits you. Nope, just constipated. But boy, let me tell you it will feel like giving birth to a bowling ball when I finally have to go. Unless, you choose the laxative route. I’ll still give birth out the back end, but not to a bowling ball. Instead, the bowling ball will be more like a baseball with numerous waterfalls echoing behind it. Everyone has their chosen poison for this. One brand will create doubled over stomach and intestinal cramps through the process, so you avoid that like the plague. Another promises to make things “softer,” but reality and previous experience tell you otherwise. Finally, you choose the one that requires you to drink sandy liquid, but eases the process a little. And, after your week of relief and healing from being Niagara Falls for a few weeks, you realize the cycle starts all over again. You aren’t alone. Many more people struggle than would ever admit. And, while I joked about IBS, it’s really no joke. Getting the runs at the restaurant before the meal is even over isn’t anyone’s idea of fun. It’s painful, debilitating, and causes a plethora of other problems. It’s real. And, to my fellow IBS warriors, I salute you. The next time you’re in that special aisle at the drug store, I hope you think of this article, get a little chuckle and salute back. You aren’t alone. We want to hear your story. Become a Mighty contributor here . Thinkstock Image By: Manuel-F-O

Tracy Smith

A Humorous Perspective on Irritable Bowel Syndrome

One of my many illnesses is irritable bowel syndrome, or IBS.  Everyone just says IBS, because, well, let’s be honest, who wants to say, “I have irritable bowel syndrome?!” When you go to work, your boss doesn’t likely have a big sign on him or her that says, “I had diarrhea four times this morning before I left the house and will most likely pee out my anus the rest of the day too.” Similarly, the moms and dads at school pick-up aren’t going to declare they’ve had constipation for a week and feel like they will puke their guts out if they don’t use the bathroom soon. I mean really. It’s hard enough to talk to your doctor about, let alone other people. But, alas, a lot of us struggle.  I have for over 20 years, and have been diagnosed in three states. I’m not really sure why the doctors in these states didn’t take the word of the previous doctor, but they didn’t. It’s not like it’s a hot diagnosis everyone is talking about and dying to have. It’s hard enough to admit, just believe me. That aside, I thought I would talk about some of the relatable issues that arise with IBS. If you have IBS, you will likely relate – so, hopefully through the giggles there will be some “I’m not alone” moments too. When you have that big project at work and the presentation is in 10 minutes, and you’re in the bathroom with severe diarrhea and you think, “Oh my God, not now! Not now!” You pray during the presentation that you don’t start leaking – especially since you wore that slick new ivory power suit. How about that school field trip? The one with limited bathrooms, that’s guaranteed to be on the hottest day of the year. With port-a-potty like bathrooms and toilet paper that is so thin and rough, you can see through it. The kind that gets stuck to the sweat on your skin and makes it impossible to use on a 100 degree days with 200 percent humidity!? When you’re in charge of a bunch of little kids and can’t be in the bathroom alone for 20 minutes?!  There’s no slipping out to a bathroom far, far away on one of these days. Nope. Prayer, starvation, and lots of pre-emptive medication are your only hope. Anxiety can fuel IBS symptoms.  So, the more anxious you are, the more severe the diarrhea. Then you freak out about the diarrhea, which continues to make it worse. How many of you have that Pepto-Bismol bottle in your drawer at work, or in your purse? Or carry around the anti-diarrheal meds in your pocket? I’ve found myself chugging Pepto before a meeting at 8:00 a.m., but now I can’t because I’m allergic to it (lucky me). I should own stock in Tucks. Or, when you cycle into constipation. You are starving so you keep eating and forget that you haven’t gone for, I don’t know, three days or a week or so. All of a sudden you aren’t hungry anymore, and you have a backache that feels like a kidney stone is coming. You can’t wrap your brain around what is happening to your body. Your jeans are tight. You look at food and want to vomit. Am I pregnant? Then it hits you. Nope, just constipated. But boy, let me tell you it will feel like giving birth to a bowling ball when I finally have to go. Unless, you choose the laxative route. I’ll still give birth out the back end, but not to a bowling ball. Instead, the bowling ball will be more like a baseball with numerous waterfalls echoing behind it. Everyone has their chosen poison for this. One brand will create doubled over stomach and intestinal cramps through the process, so you avoid that like the plague. Another promises to make things “softer,” but reality and previous experience tell you otherwise. Finally, you choose the one that requires you to drink sandy liquid, but eases the process a little. And, after your week of relief and healing from being Niagara Falls for a few weeks, you realize the cycle starts all over again. You aren’t alone. Many more people struggle than would ever admit. And, while I joked about IBS, it’s really no joke. Getting the runs at the restaurant before the meal is even over isn’t anyone’s idea of fun. It’s painful, debilitating, and causes a plethora of other problems. It’s real. And, to my fellow IBS warriors, I salute you. The next time you’re in that special aisle at the drug store, I hope you think of this article, get a little chuckle and salute back. You aren’t alone. We want to hear your story. Become a Mighty contributor here . Thinkstock Image By: Manuel-F-O

Tracy Smith

Why a Shower Is a Big Deal for My Son With Autism and Sensory Processing Disorder

My son is brave. He took a shower tonight. A full shower. Head wet. With water coming out of the shower head. Warm water, not cold. A full body, hair washed, under the water, traditional shower. He’s 8. Imagine being on The Maid of the Mist at Niagara Falls. The Falls are deafening as you near them, so you plug your ears. The pressure, like an airplane, makes your eardrums feel like they will explode. The beads of water are rushing at you so quickly they feels like “stingers” on your skin. Your adrenaline is pumping — it’s amazing to be this close to something so deadly, so powerful.  You’re scared but excited. The boat keeps getting closer, and suddenly you realize it’s out of control. You’re heading right for the falls — how will you survive? Surely it will kill you. It will make the boat crack apart like toothpicks — “panic” is putting this emotion mildly. The fear is overwhelming. What do you do? Jump and try to swim? You’ll be caught in a current and pulled under. Is there anything you can do? There are seconds left until your boat hits the falls and you die. Now what? Dramatic? Maybe. But that is what a shower seems like to my 8-year-old boy with autism, sensory processing disorder and a few other diagnoses. The beads of water feellike “stingers” piercing his skin. He’s never been able to get near it until today. Baths only. As a toddler, his fear of water was relentless and came out of nowhere. Without going into excruciating detail, this is a huge moment for him. He doesn’t like sprinklers or swimming — he can only handle it for a short period of time, if at all. And never, ever gets his head wet. All this changed tonight. I’m not sharing these details to embarrass him one day, or right now. This is personal. For us and many other families. He wants the world to know he “is just like” his big brother. He wants other autistic kids, like him (because there is a huge spectrum), to knowthey can do it too. When and if they are ready, “they can be brave too.” He wants them to know he “did it!” He is proud of himself, and he should be — I am afraid of a lot of things and don’t face them daily like he does. Every time I think he has reached the end of possibility, the reality that maybe this is the most he will continue to develop, he breaks through his fears and goes further than we ever expected. He pushes his boundaries and exceeds expectations, not only ours but his own.  He never stops amazing us. He never quits, not in the long run. Even through the: “I’m scared, Mom! I’m a little afraid. OK, I’m a lot afraid! But I can do it!” Not only did he conquer one of his biggest fears, he recognized his feelings about it (both before and after), and verbalized them. We adapted his experience: neon pink ear plugs, I helped wash his hair, towel nearby for water in his eyes, and his big brother was right there for support as needed. So you see, my son is brave. He’s scared doing most everything, every day, but does it. He beats the odds. He lives in a neurotypical world that is not friendly towards him, at all really. He is full of love and spirit and courage. I told my son how brave he was and how proud we are of him, and he is proud of himself: “I did it! I took a shower like [my big brother]!” He jumped up and down, screeching, neon pink earplugs still in his ears. Right now, he is excitedly flapping so hard in his bedroom I can hear him in the living room while I write this. A shower may not seem like a big deal to most people. But to us, it’s not just a shower. It’s endless possibility. The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Tracy Smith

Why a Shower Is a Big Deal for My Son With Autism and Sensory Processing Disorder

My son is brave. He took a shower tonight. A full shower. Head wet. With water coming out of the shower head. Warm water, not cold. A full body, hair washed, under the water, traditional shower. He’s 8. Imagine being on The Maid of the Mist at Niagara Falls. The Falls are deafening as you near them, so you plug your ears. The pressure, like an airplane, makes your eardrums feel like they will explode. The beads of water are rushing at you so quickly they feels like “stingers” on your skin. Your adrenaline is pumping — it’s amazing to be this close to something so deadly, so powerful.  You’re scared but excited. The boat keeps getting closer, and suddenly you realize it’s out of control. You’re heading right for the falls — how will you survive? Surely it will kill you. It will make the boat crack apart like toothpicks — “panic” is putting this emotion mildly. The fear is overwhelming. What do you do? Jump and try to swim? You’ll be caught in a current and pulled under. Is there anything you can do? There are seconds left until your boat hits the falls and you die. Now what? Dramatic? Maybe. But that is what a shower seems like to my 8-year-old boy with autism, sensory processing disorder and a few other diagnoses. The beads of water feellike “stingers” piercing his skin. He’s never been able to get near it until today. Baths only. As a toddler, his fear of water was relentless and came out of nowhere. Without going into excruciating detail, this is a huge moment for him. He doesn’t like sprinklers or swimming — he can only handle it for a short period of time, if at all. And never, ever gets his head wet. All this changed tonight. I’m not sharing these details to embarrass him one day, or right now. This is personal. For us and many other families. He wants the world to know he “is just like” his big brother. He wants other autistic kids, like him (because there is a huge spectrum), to knowthey can do it too. When and if they are ready, “they can be brave too.” He wants them to know he “did it!” He is proud of himself, and he should be — I am afraid of a lot of things and don’t face them daily like he does. Every time I think he has reached the end of possibility, the reality that maybe this is the most he will continue to develop, he breaks through his fears and goes further than we ever expected. He pushes his boundaries and exceeds expectations, not only ours but his own.  He never stops amazing us. He never quits, not in the long run. Even through the: “I’m scared, Mom! I’m a little afraid. OK, I’m a lot afraid! But I can do it!” Not only did he conquer one of his biggest fears, he recognized his feelings about it (both before and after), and verbalized them. We adapted his experience: neon pink ear plugs, I helped wash his hair, towel nearby for water in his eyes, and his big brother was right there for support as needed. So you see, my son is brave. He’s scared doing most everything, every day, but does it. He beats the odds. He lives in a neurotypical world that is not friendly towards him, at all really. He is full of love and spirit and courage. I told my son how brave he was and how proud we are of him, and he is proud of himself: “I did it! I took a shower like [my big brother]!” He jumped up and down, screeching, neon pink earplugs still in his ears. Right now, he is excitedly flapping so hard in his bedroom I can hear him in the living room while I write this. A shower may not seem like a big deal to most people. But to us, it’s not just a shower. It’s endless possibility. The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Tracy Smith

Why a Shower Is a Big Deal for My Son With Autism and Sensory Processing Disorder

My son is brave. He took a shower tonight. A full shower. Head wet. With water coming out of the shower head. Warm water, not cold. A full body, hair washed, under the water, traditional shower. He’s 8. Imagine being on The Maid of the Mist at Niagara Falls. The Falls are deafening as you near them, so you plug your ears. The pressure, like an airplane, makes your eardrums feel like they will explode. The beads of water are rushing at you so quickly they feels like “stingers” on your skin. Your adrenaline is pumping — it’s amazing to be this close to something so deadly, so powerful.  You’re scared but excited. The boat keeps getting closer, and suddenly you realize it’s out of control. You’re heading right for the falls — how will you survive? Surely it will kill you. It will make the boat crack apart like toothpicks — “panic” is putting this emotion mildly. The fear is overwhelming. What do you do? Jump and try to swim? You’ll be caught in a current and pulled under. Is there anything you can do? There are seconds left until your boat hits the falls and you die. Now what? Dramatic? Maybe. But that is what a shower seems like to my 8-year-old boy with autism, sensory processing disorder and a few other diagnoses. The beads of water feellike “stingers” piercing his skin. He’s never been able to get near it until today. Baths only. As a toddler, his fear of water was relentless and came out of nowhere. Without going into excruciating detail, this is a huge moment for him. He doesn’t like sprinklers or swimming — he can only handle it for a short period of time, if at all. And never, ever gets his head wet. All this changed tonight. I’m not sharing these details to embarrass him one day, or right now. This is personal. For us and many other families. He wants the world to know he “is just like” his big brother. He wants other autistic kids, like him (because there is a huge spectrum), to knowthey can do it too. When and if they are ready, “they can be brave too.” He wants them to know he “did it!” He is proud of himself, and he should be — I am afraid of a lot of things and don’t face them daily like he does. Every time I think he has reached the end of possibility, the reality that maybe this is the most he will continue to develop, he breaks through his fears and goes further than we ever expected. He pushes his boundaries and exceeds expectations, not only ours but his own.  He never stops amazing us. He never quits, not in the long run. Even through the: “I’m scared, Mom! I’m a little afraid. OK, I’m a lot afraid! But I can do it!” Not only did he conquer one of his biggest fears, he recognized his feelings about it (both before and after), and verbalized them. We adapted his experience: neon pink ear plugs, I helped wash his hair, towel nearby for water in his eyes, and his big brother was right there for support as needed. So you see, my son is brave. He’s scared doing most everything, every day, but does it. He beats the odds. He lives in a neurotypical world that is not friendly towards him, at all really. He is full of love and spirit and courage. I told my son how brave he was and how proud we are of him, and he is proud of himself: “I did it! I took a shower like [my big brother]!” He jumped up and down, screeching, neon pink earplugs still in his ears. Right now, he is excitedly flapping so hard in his bedroom I can hear him in the living room while I write this. A shower may not seem like a big deal to most people. But to us, it’s not just a shower. It’s endless possibility. The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Tracy Smith

Why a Shower Is a Big Deal for My Son With Autism and Sensory Processing Disorder

My son is brave. He took a shower tonight. A full shower. Head wet. With water coming out of the shower head. Warm water, not cold. A full body, hair washed, under the water, traditional shower. He’s 8. Imagine being on The Maid of the Mist at Niagara Falls. The Falls are deafening as you near them, so you plug your ears. The pressure, like an airplane, makes your eardrums feel like they will explode. The beads of water are rushing at you so quickly they feels like “stingers” on your skin. Your adrenaline is pumping — it’s amazing to be this close to something so deadly, so powerful.  You’re scared but excited. The boat keeps getting closer, and suddenly you realize it’s out of control. You’re heading right for the falls — how will you survive? Surely it will kill you. It will make the boat crack apart like toothpicks — “panic” is putting this emotion mildly. The fear is overwhelming. What do you do? Jump and try to swim? You’ll be caught in a current and pulled under. Is there anything you can do? There are seconds left until your boat hits the falls and you die. Now what? Dramatic? Maybe. But that is what a shower seems like to my 8-year-old boy with autism, sensory processing disorder and a few other diagnoses. The beads of water feellike “stingers” piercing his skin. He’s never been able to get near it until today. Baths only. As a toddler, his fear of water was relentless and came out of nowhere. Without going into excruciating detail, this is a huge moment for him. He doesn’t like sprinklers or swimming — he can only handle it for a short period of time, if at all. And never, ever gets his head wet. All this changed tonight. I’m not sharing these details to embarrass him one day, or right now. This is personal. For us and many other families. He wants the world to know he “is just like” his big brother. He wants other autistic kids, like him (because there is a huge spectrum), to knowthey can do it too. When and if they are ready, “they can be brave too.” He wants them to know he “did it!” He is proud of himself, and he should be — I am afraid of a lot of things and don’t face them daily like he does. Every time I think he has reached the end of possibility, the reality that maybe this is the most he will continue to develop, he breaks through his fears and goes further than we ever expected. He pushes his boundaries and exceeds expectations, not only ours but his own.  He never stops amazing us. He never quits, not in the long run. Even through the: “I’m scared, Mom! I’m a little afraid. OK, I’m a lot afraid! But I can do it!” Not only did he conquer one of his biggest fears, he recognized his feelings about it (both before and after), and verbalized them. We adapted his experience: neon pink ear plugs, I helped wash his hair, towel nearby for water in his eyes, and his big brother was right there for support as needed. So you see, my son is brave. He’s scared doing most everything, every day, but does it. He beats the odds. He lives in a neurotypical world that is not friendly towards him, at all really. He is full of love and spirit and courage. I told my son how brave he was and how proud we are of him, and he is proud of himself: “I did it! I took a shower like [my big brother]!” He jumped up and down, screeching, neon pink earplugs still in his ears. Right now, he is excitedly flapping so hard in his bedroom I can hear him in the living room while I write this. A shower may not seem like a big deal to most people. But to us, it’s not just a shower. It’s endless possibility. The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Tracy Smith

Why a Shower Is a Big Deal for My Son With Autism and Sensory Processing Disorder

My son is brave. He took a shower tonight. A full shower. Head wet. With water coming out of the shower head. Warm water, not cold. A full body, hair washed, under the water, traditional shower. He’s 8. Imagine being on The Maid of the Mist at Niagara Falls. The Falls are deafening as you near them, so you plug your ears. The pressure, like an airplane, makes your eardrums feel like they will explode. The beads of water are rushing at you so quickly they feels like “stingers” on your skin. Your adrenaline is pumping — it’s amazing to be this close to something so deadly, so powerful.  You’re scared but excited. The boat keeps getting closer, and suddenly you realize it’s out of control. You’re heading right for the falls — how will you survive? Surely it will kill you. It will make the boat crack apart like toothpicks — “panic” is putting this emotion mildly. The fear is overwhelming. What do you do? Jump and try to swim? You’ll be caught in a current and pulled under. Is there anything you can do? There are seconds left until your boat hits the falls and you die. Now what? Dramatic? Maybe. But that is what a shower seems like to my 8-year-old boy with autism, sensory processing disorder and a few other diagnoses. The beads of water feellike “stingers” piercing his skin. He’s never been able to get near it until today. Baths only. As a toddler, his fear of water was relentless and came out of nowhere. Without going into excruciating detail, this is a huge moment for him. He doesn’t like sprinklers or swimming — he can only handle it for a short period of time, if at all. And never, ever gets his head wet. All this changed tonight. I’m not sharing these details to embarrass him one day, or right now. This is personal. For us and many other families. He wants the world to know he “is just like” his big brother. He wants other autistic kids, like him (because there is a huge spectrum), to knowthey can do it too. When and if they are ready, “they can be brave too.” He wants them to know he “did it!” He is proud of himself, and he should be — I am afraid of a lot of things and don’t face them daily like he does. Every time I think he has reached the end of possibility, the reality that maybe this is the most he will continue to develop, he breaks through his fears and goes further than we ever expected. He pushes his boundaries and exceeds expectations, not only ours but his own.  He never stops amazing us. He never quits, not in the long run. Even through the: “I’m scared, Mom! I’m a little afraid. OK, I’m a lot afraid! But I can do it!” Not only did he conquer one of his biggest fears, he recognized his feelings about it (both before and after), and verbalized them. We adapted his experience: neon pink ear plugs, I helped wash his hair, towel nearby for water in his eyes, and his big brother was right there for support as needed. So you see, my son is brave. He’s scared doing most everything, every day, but does it. He beats the odds. He lives in a neurotypical world that is not friendly towards him, at all really. He is full of love and spirit and courage. I told my son how brave he was and how proud we are of him, and he is proud of himself: “I did it! I took a shower like [my big brother]!” He jumped up and down, screeching, neon pink earplugs still in his ears. Right now, he is excitedly flapping so hard in his bedroom I can hear him in the living room while I write this. A shower may not seem like a big deal to most people. But to us, it’s not just a shower. It’s endless possibility. The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.