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    Community Voices

    My son has ADHD, below average motor skills development, and could have childhood apraxia of speech. Should we consider dyspraxia?

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    Community Voices

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    Community Voices

    Lately the stress in my life has been messing with my language abilities, more than usual. Mostly expressive, but of course, since I have developmental receptive language difficulties as well, that's affected too. It's reminded me (over and over again) that the basic, underlying , fundamental difficulties that have been with me all my life really haven't changed, even though I've got oodles more compensatory skills than I used to. Many of which I've been losing to various degrees, for varying lengths of time.

    I really don't have anyone in my life anymore who understands what it's like to struggle with language, to struggle with communication, to struggle even with the concepts that underlie these things. Much less the physical difficulties that present themselves periodically as well. (Movement disorder type things, which may or may not be partially diagnosed). #Apraxia #ApraxiaOfSpeech #VocalCordDysfunction #FocalDystonia #SensoryProcessingDisorder #SensoryIntegration

    I feel like such an alien sometimes... having difficulty understanding concepts other people (even children) take for granted, yet easily understanding and being able to do things other people find difficult, easily.

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    Laura Smith

    The Infinite Possibilities Disability Inclusion in Schools Can Bring

    Do you have a child with a disability? If you do, I’m almost positive that at some point in this parenting journey you have felt the pain of wanting them to be happy and included. Do you have a child without a disability? Have you ever been sad when your child felt left out? If you have, I can confidently say to multiply that feeling by infinity and you’ll have a small understanding of how awful it feels when your child with a disability is excluded. Infinity. Infinity. My daughter Ashlynn is now 12 and started middle school. She’s only ever been invited to one peer’s birthday parties. Despite being happy and kind with a smile so bright it could rival the sun, it’s always been a struggle for her to be included. A natural-born socialite, Ashlynn was born with disabilities that have effectively worked as barriers between her and her desire to be social. How much does she long to feel included? I can’t really say for sure but anything I can imagine I’m sure we can multiply by… infinity. Infinity. Infinity. Inclusion is not something new. Disability advocates including special education staff and others have been trying to do this successfully for decades. Though we’ve come farther than when I was in high school, where the kids in special education only had a hallway and never attended general education classes, simply sticking them in general education classes wasn’t including them either. As time went on, we have been learning. Inclusion is not just a place. If it were, kids on the outside would have long been included by now. True inclusion is really a culture. It’s in a culture of people who all viscerally buy into this idea that everyone matters. It’s a culture of many many people beyond disability and diversity advocates who accept we all have way more in common than we do not. So what are the possibilities of an entire culture of people practicing inclusion? I’m no expert, but I think the answer is probably infinity. Infinity. Infinity. That leads me to this new middle school my daughter Ashlynn is at this year. Even just walking through the doors, one gets the sense that this building houses a culture of inclusivity. It’s literally written in signs on the walls and throughout the building. In the girls’ bathroom, positive affirmation notes are hung above the mirrors. I remember washing my hands and wondering if instead of hating my reflection every day as a middle schooler how it might have helped to then read a positive affirmation above it? In hallways, inspirational messages are posted throughout like this one from Eckhart Tolle that reads: “Some changes look negative on the surface, but you will soon realize that space is being created in your life for something new to emerge.” Middle school is full of so many changes. Changes to our bodies, our cognition, and our way of navigating the world. Imagine a child going through that but reading that sign above Ashlynn every day. Could it change how they feel? I don’t really know for sure, but even if it helped one child, it’s worth it. Who knows how many that child would go on to help? Maybe the answer is more like infinity. Infinity. Infinity. Ashlynn has thrived in her sixth-grade year, being included in general education, track, and basketball. Her science teacher modifies her school work on his own. He takes responsibility himself for scaffolding her work instead of relying on the special education teacher. The dean of students who helps with traffic flow in the morning took to Ashlynn “helping” her do traffic duty. Every morning Ashlynn happily smiles and waves on the cars alongside the dean. It would be impossible not to notice how Ashlynn is being included every morning by teachers, parents and students alike. You know what this fosters? Inclusion times infinity. Infinity. Infinity. The year culminated into something called the first annual “Inclusion Spirit Week.” Excuse me? I’ve worked in special education since 2004 and I’ve never ever heard of anything like this. To make it work though, all members of the community had to believe in and practice inclusion, because as I said, inclusion is not a place, it’s a culture. It’s a culture like Spirit Week for school pride! It’s a culture like team spirit. It takes a collective group of people, disabled and non-disabled, advocates and non-advocates who truly believe inclusion matters. To be clear, inclusion week was not just about kids with disabilities. I’m writing about it because my child happens to have one. The week had themes of not letting anyone sit alone, how to be a friend when you see someone sitting alone, and more. The assembly featured games and incorporated all members of the student body participating in games against the teachers. That’s where Ashlynn came in. She was on a basketball team of students working to get more baskets in one minute than the teachers. She was paired with a peer buddy who helped her alongside other general education students working to defeat the teachers. How much did this mean to her? Well to quote Buzz Lightyear, I’m pretty sure it was “to infinity and beyond.” Infinity. Infinity. I don’t say it lightly when I tell you that Ashlynn’s new school has been nothing short of amazing. Reading, writing, and math are important, but so are kindness and mental health. This school offers all of that. What’s the name of such an amazing school,  you might ask? Well, it’s none other than Infinity Middle School. Our gratitude overflows. My husband bawled through the entire assembly. The only way to describe happiness like that is nothing shorter than infinity.

    Susan Bosscawen

    What I've Learned Since My Husband's Stroke

    “Hello, this is the nurse at the orthopedic hospital. Early this morning your husband had a neurological problem develop …” “Has he had a stroke?” “Yes, ma’am.” “I’m leaving now.” And our life turned upside-down. We don’t get to choose all of the cards we are dealt in life. We do choose how we play them. Both divorced and in our 50s, we found ourselves rebuilding our lives. My long-held plans ended five years earlier when my ex abandoned our marriage and our children. He was sorting out his life in wake of a dead marriage. We started a new life together. He loved me and my two teens as he did his own daughters. Long-term back pain worsened and his surgeon recommended fusion surgery. This strong, active man persevered through all they threw at him—physical therapies, pain, medications, and injections—with fervor and without complaint. The back pain returned. The orthopedic recommended another fusion procedure. We should be in and out of the hospital in 48 hours. I would stay nearby with my girlfriend, Gloria. Twelve hours after the surgery, he had a “small to medium, middle cerebral artery (MCA), ischemic stroke on the left side with expressive aphasia and apraxia.” Gloria grabbed my hands and said a quick prayer for his recovery before I hurried out the door. He spent a month in the hospital. And thus began our learning how to play this latest hand we’d been dealt. Those weeks in the hospital were an eye-opening experience for both of us. Many of our preconceived thoughts and expectations of the medical community were tossed on end. I thought, “Strokes aren’t new. They’ll know what to do, what we’re to expect.” But … no. The brain is a massive pile of little gray cells. Every stroke touches on different cells even if they’re very near each other. Suppose they were all numbered. My stroke may happen on cells 1000-2000. Your stroke, same size as mine, same area as mine, but cells 1500-2500 are damaged. So we will each have similar and different deficits from the stroke. That was the first thing we learned. They cannot tell you with certainty when or if you’ll recover. He was an aggressive participant in his recovery. He never gave up. Attitude and perseverance play a huge role in recovery. He’d had serious back surgery the day before the stroke. It was listed on his charts. I’d written it on the whiteboard in each hospital room. I told anyone who entered his room. I was continually amazed that no one seemed to know. Many times I would arrive during PT to find the therapist did not know of the surgery. “Did you read his chart? Or here, written on the board?” It happened many, many times. That was the second thing I learned, never assume they know more than you. One medical professional told me he’d be fit as a fiddle in three months. Another said, “He’ll never be the same man again.” Both were wrong. I knew my husband. We needed their help, but I knew him best. He came home four weeks after his surgery. Home Health scheduled physical therapy, occupational therapy, and speech therapy. We were both on my employer’s health insurance. He, and many stroke survivors (SS), will need therapy for years. Most insurance pays for a limited number of visits. It won’t be enough. The third thing I learned was to keep records. Take notes on everything. Dates, times, names, locations, events. Record the visits to his room by the medical professionals, what was said or done. Make notes of your SS’s blood pressure, weight, any falls, nausea, dizziness, diet, alcohol/tobacco consumed, and on and on. And your questions. We must learn as much as possible. We cannot wait for the medical community to initiate his therapy. I Googled. I watched YouTube videos. I read books. I joined FB pages. You must become your own advocate. He took ownership of his therapy. But healing is slow. We live in a high-tech world. If something breaks, we toss it and buy another. Our bodies are complex low-tech beings. We must be patient, yet not complacent. We must gauge our recovery not in days, but in seasons, “Do I feel better at Easter than last Christmas?” Make videos. Take pictures. Anything to show your stroke survivor that they are improving. Everything for encouragement. The memory is fuzzy. Life is overwhelming and in three or four months you may forget just how far your SS has come. It is now about 18 months since his stroke. He’s still improving. Life is different, but he’s still the man I married.

    Eileen Herzog

    Living With and Treating an Articulation Speech Disorder

    Articulation disorder is a speech disorder that causes difficulties in “the way sounds are formed and strung together, usually characterized by substituting one sound for another, omitting a sound or  distorting a sound.” This makes communication challenging, especially for younger children. Even asking for help can be difficult, particularly in a new situation. It is characterized by very slurred speech, which is difficult to understand. While those with this disorder are hard to understand when they speak, they understand language quite well. The tricky part of this disorder is that it is often caused by other physical or neurological problems that also need to be treated. Treatment is sometimes delayed; however, speech therapy should be set up as soon as you notice problems, as delaying treatment can lead to less positive outcomes. To help in overcoming this disorder it you should read to your children in the beginning years. While this is important for all children, it is especially important for those with articulation issues. Reading out loud helps them hear and remember words and their meanings. Besides reading books, educational games at home can also help  a great deal as the child will be having fun and may not realize that they are learning. Even a game like Scrabble can help a lot as they are creating words, and you can have the child say the word out loud, thus helping their articulation. As children get older the disorder can become more of a challenge as they see that their speech is very different from the majority of their classmates. For example, if it is their turn to present in front of the classroom and their speech can be hard to understand, regretfully not everyone will be empathic about it. As a result, this can lead to self-esteem issues. Studies show stress can make speech harder to understand. This makes the teenage years especially hard. For example, teens are now expected to express their needs and thoughts on their own, which is hard to do with articulation difficulties. This can lead to a lot of frustration and misunderstanding and in some cases bullying. As someone who has articulation difficulties, I know well about the challenges you can face. In many cases it doesn’t go away, it only becomes more manageable. For me personally what brings the most frustration is having to repeat myself when doing something like ordering food. Especially if I need to repeat myself more than twice. Thankfully from being connected with others through sports and other activities I have learned how to communicate better and am conscious about the way I am pronouncing sounds. For me, only new situations are harder. I can’t stress enough how important it is to be involved in school or community activities as those around you become more comfortable with your speech; it also gives you the confidence to improve it. Thankfully speech therapy is very effective for treating deficits in pronunciation, motor related challenges and understanding language. Therapies focus on practicing the motor skills involved in forming and vocalizing certain sounds, learning rules of speech and applying these concepts across different concepts. The tricky part about this disorder is often there isn’t a quick fix as their vocabulary expands and certain words become harder to pronounce. For example, the word “knowledgeable” is a hard word to say correctly and those with the disorder often say the ending as “able” though it is pronounced “ible.” However, through hard work and dedication those with the disorder can learn to speak more clearly, as the treatment plans are pretty straightforward. Please keep this in mind though as hard as it may seem, children make great progress if they receive individual and/or group speech therapy. Individual therapy allows for extensive practice and group therapy allows you to practice together and support each other. Overall, those with the disorder generally do achieve success both academically and socially. The best thing you can do is to be involved in school and social activities along with continuing speech therapy. Being someone with an articulation disorder I know how true this is. It is certainly not easy and I still get frustrated at times, however accepting it and treating it makes all the difference in the world.

    Jacquelyn B

    It’s OK to Have Hard Days as the Parent of an Autistic Child

    I am a happy mother, sometimes sad mother. I am a strong mother, sometimes vulnerable mother. I am a sensible mother, sometimes sensitive mother. I am a protective mother, sometimes advocate mother. I am a tired mother, sometimes energized mother. I’m a some days are hard mother, questioning if I am doing everything right mother… Just a mother giving it her all. I am just an average woman, nobody special. I am trying to give my son the best of everything.  Trying to give him a beautiful life, always making sure he stays true to his authentic self! I want him to be proud of who he is! I never want to change who he is — he is simply magnificent. I am the mother who lays awake in bed while everyone else is asleep. Laying there overcome with an immense amount of anxiety. Isolated. Misunderstood. Overwhelmed. Worried. Defeated. Being the mom of a child with disabilities is hard. Some will judge me for admitting this. I am sick of sugar-coating things. Some days I am not OK. This is all new to me. During the last 10 months since my son received his diagnosis, I had a lot to learn. I made sure to listen to autistic adults, read their blogs and books. I must now be an expert in autism, knowing up-to-date terminology so I don’t offend anyone when speaking on behalf of my child. I must now be an occupational therapist, physical therapist, and speech therapist. I must be an ASL teacher, teaching my son sign language. I must be a special education teacher, a nurse, and a specialist. I must know everything about childhood apraxia of speech, motor planning, oral apraxia, sensory challenges, and hypotonia. I must be an expert with IEPs, an expert in advocacy, and know all the laws that protect my child’s disability rights. I’m not a bad parent for admitting that it can be hard — just because you may not understand my hard does not mean it isn’t.If you say you are struggling, you are sometimes ridiculed, but all parents have difficult days, months, and even years. I see mothers with neurotypical kids all over social media talking about how motherhood is hard. I am learning as I go, trying my absolute hardest. Even days I feel like I got nothing to give, I still give it my all. On those hard days, I hug my baby a little tighter. If I am having a hard day, I can’t imagine how he is feeling. I wish I could view the world through my son’s eyes. Learning to really listen when you have a child you can not speak yet, to hear what your child cannot say. Some days the mental load of all the specialists, evaluations, phone calls, team meetings, distance from friends and family, people telling you what is “wrong” with your child, how far delayed they are, the doctors, PT, OT, speech therapy, and long wait lists take a toll. To be clear, it is not my child that is exhausting. My child is my greatest blessing. My world. What is exhausting is having to fight for services, dealing with a broken system, and people wanting to fix my child. He is not broken. Arguing with insurance companies, making sure the school is following my child’s IEP, having to defend your child to others who criticize or think they know better. What’s exhausting is people thinking my son is just a “little autistic” and therefore things are not as challenging for him. That we can break routines, that he can handle things I say he doesn’t like. I’m so sick and tired of being questioned. I am his mother. He is my son. I know him better than anyone. There is no “easy” autism. You know what we decide to share with you. This is why boundaries with friends and family are a must. I can’t help but say I am “fine” when someone asks how I am doing, because even if I explain it, they won’t understand. Just like I didn’t understand until I became the parent of an autistic child. It took being on the other side to truly understand. I do get it now. To those with disabilities, I am so sorry I am really just now seeing you. I am human. I cry, I have feelings and I am sorry I am not Superwoman. It has been 10 months since Rocco’s diagnosis. Someone told me the first year of the diagnosis is the hardest. Then you will find your groove, and your tribe of others who just get it. There are new bonds and friendships to be made. I know it will get easier and then hard again. This is life. As long as my son is happy, well… that’s all that matters.

    Jacquelyn B

    How My Son's Autism Diagnosis Has Changed Me

    I’m not the person you once knew. People grow and change. We strive to become the best versions of ourselves. We become wiser, kinder, more mature and understanding. I started to change into the next chapter of my adult life when I was expecting my son. I wanted to be the best mother I could possibly be. I did everything right during my pregnancy. Becoming a mother changed me in so many beautiful ways. I wanted to give him the world! All that mattered was this perfect, gorgeous newborn in my arms. Our family of three. My heart was so full. It was as if every broken piece of my heart from the past was put back together. My son gave me a second chance at motherhood. I experienced so much loss, the loss of my daughter 17 years ago through adoption and then years later multiple miscarriages when we were trying to start our family. He is our rainbow baby. But what really changed me and my outlook on everything: autism. It was just one word. A word that changed our lives in a blink of an eye. I suspected my son was on the spectrum for some time. I noticed around when he was 16 months old. No one else thought so. I knew, though. A mother knows her child better than anyone. I always knew Rocco was different. He is unique, so sweet, patient, loves music, instruments, trains, puzzles, numbers, letters, art and books. He is so smart. He is different than others his age, different in such a beautiful way. The day of his evaluation I was alone; our appointment was during COVID-19 and only one parent was allowed in. This appointment was after a year-long wait. This is why early intervention is crucial. The evaluation waiting lists are anywhere from 6-12 months. Walking in, I knew what the outcome would be. I remember the night before I even said to my parents and husband to prepare themselves. I barely slept that night, I was so nervous. During the evaluation, they asked me all about family history, my pregnancy, my son’s birth, characteristics of Rocco, my concerns etc. A lot of the answers to her questions were nos, but the ones I said yes to were the classic autism signs. After the doctor’s partner was done gathering my information, we stepped into the evaluation room where Rocco was playing with the doctor. I sat quietly and watched. I just knew watching the doctor interact with my son. I knew what she was going to say at the end. At times, I’d get nervous because I didn’t want to accept it. I did not want to hear the word autism. The word autism scared me. I’m just being honest. I felt like that I would be judged, blamed, that I let my son down, I felt guilt. I was so pleased when he made lots of eye contact, showed excellent joint attention, used gestures, sign language and pretend play during the evaluation. Looking back, I felt so angry with myself for holding on to the “look, he’s doing this and he is doing that.” I was still wrapping my arms so tightly around denial. I didn’t want to let it go. I didn’t want to hear that my son would have to struggle with the societal stigma attached to autism. The doctor finished up with Rocco and joined me at the table. She then said what I already knew, “So Rocco does fall on the spectrum.” She went over the ADOS test in great detail with me, explaining everything so well. The doctor told me Rocco is “higher functioning,” a word we know is frowned upon in the autism community as we know there is no such thing as easy autism, but I bluntly asked her, as if I needed that as reassurance. You can judge me for this, but I was coping. I panicked. I felt guilty enough even admitting it had brought me a sense of comfort. I was all alone. It is so hard and heartbreaking to hear something is “medically wrong” with your child who is so perfect to you in every single way. It was as if hearing he is autistic came as a surprise, even though I knew. This is the first stage of grief — denial. I could instantly feel my face flush and get warm. Hearing her say my son’s autistic took my breath away. My heart started to race; I started to sweat. I had to dig so deep within myself to hold back what I knew would be uncontrollable tears. I wanted to keep my composure and stay strong, but on the inside, I felt overwhelmed. The doctor who diagnosed my son was amazing. She was so very personable and kind. She made this emotional experience less painful. She made me feel like Rocco is going to be OK. She pointed out to me how she could see the bond between Rocco and me. She really praised me and told me to just keep doing what I’m doing. It was nice to hear such positivity from her,  such compassion from a doctor. We then discussed what the next steps would be for his treatment plan. She answered all my 1,000 questions. My son’s autism diagnosis has changed me personally in many ways. It started with denial, then anger. I was especially angry that a lot of people were just not there for me during this difficult time. Friends didn’t call, some family didn’t say a word to me. I felt so isolated. I felt like no one cared. Did they not understand how incredibly scared we were as parents, how incredibly emotional we were? Autism has taught me who my people are. My biggest supporters are my wonderful parents. I am so lucky to have them. In many cases, the people I never expected to be the ones to support me have been there for me. Some people I haven’t spoken to in years have reached out offering support and encouragement. I am still new to the autism world, but autism is my life. If you don’t want to be a part of that and if autism makes you uncomfortable, goodbye. Because that would mean my child would make you uncomfortable. I need to find people who have similar situations, people who are not the average parents. Parents who understand my experiences. Once we had time to process the diagnosis, we realized autism isn’t a death sentence. He will still be able to reach for the stars and be something great. We love our son more than anything and will always accept him. Autism is what makes him magnificent. We decided to openly talk about it on social media to educate others and spread awareness and acceptance. This stage of grief is acceptance of autism. I’m not sad anymore. I am not ashamed of the word autism. It’s not a dirty or bad word. I see the world differently now. I’m more understanding than before, kinder, stronger, tougher and more educated. I want to understand my son’s world. I want to respect how he thinks and feels. I will continue to do all I can for my son. We will move forward on our journey.

    Jacquelyn B

    When Family and Friends Disappeared After My Child's Autism Diagnosis

    What happens to friends and family when your child gets an autism diagnosis? Why do they not say anything or reach out? I’ve had some family members and friends not say a word to me. I’m talking about the family we would see on a regular basis before the pandemic. This makes me very disappointed. It will be awkward when we do see them once we feel ready after COVID-19. I know the pandemic has made it hard for us to connect. I also understand you have your own challenges and family to worry about — but know this, I would be there for you in a heartbeat if you needed a shoulder to cry on or someone to vent to. I never ask for help, hell I didn’t even ask for help after my two back surgeries recovering from a C-section with a newborn. I got through that on my own with the help of my wonderful parents. Why is it when we endure some of our most difficult times, no one is there when we need them? If your child received a life-changing diagnosis, I would text you and just let you know I’m there to support you. To me, it comes off as rude and cold not to say anything. My parents taught me differently, I guess. Is it because I haven’t formally texted or called to say, “Rocco has been diagnosed with autism and apraxia?” Most family and friends already knew he was nonverbal and in speech therapy. Our world has been turned upside and we are learning to adjust. We no longer feel like “other parents.” It has not changed who our son is — he is still sweet, smart, beautiful, well-behaved and a joy, but he has days that are hard like we all have. It has changed who I am, I will no longer be the pushover people pleaser you once knew. That person does not exist anymore and I am so happy about that. It’s not about everyone else anymore, it’s about my son and my family. It’s OK if you don’t know what to say; it’s OK to ask questions. But please do not give out unsolicited advice on things you know nothing about. Nothing makes me more furious inside when this happens! That’s not helpful. That will only cause resentment. I’m not asking you to call me and pity me or feel sorry for me. I guess I just expected a “Hi, how are things, how is Rocco?”Any effort shows me you care, even if it’s just responding to my social media posts about autism and acceptance. I often feel isolated and sad, but I won’t beg anyone to be in my life or my son’s life. If you’re not, it’s your loss. Some family members and friends have reached out and it means so much. I know it can be awkward as you may not know what to say. You just taking that moment to reach out means everything. Some have offered to watch my son, and while I really do appreciate your offer, I don’t feel comfortable with that. Right now, I don’t need a babysitter, I need support. Offering to watch my child isn’t going to “give me a break” because you’re not familiar with how autism and apraxia affect my child. You don’t know what can trigger him, you don’t know his sensory challenges, you don’t know what calms him, you don’t know sign language, you don’t know his sounds, his facial expressions or his words. Only I do. Even my husband who is amazing with our child doesn’t know what he is trying to communicate at times, and I have to interpret it. Leaving my nonverbal son with a family member or friend just isn’t realistic, and when they understand this, it will be a relief. Supporting my son with autism takes a great amount of time and energy as a parent. This makes it hard to maintain friendships and keep up with extended family. I’m sorry if you can’t understand this. I’m truly sorry if I have been a bad friend or family member these days. If you knew how drastically things have changed, you would understand why. I’m grateful for my mom and dad who have been beyond supportive and not once criticized or questioned the way we parent. They have been my biggest cheerleaders. Supporting our son will always come before everything and everyone else. It will come before holiday parties, your friends’ night out, graduation parties, family functions etc. This isn’t to be hurtful — it’s our reality. If we do come, don’t give us grief when we need to leave because we have a routine. Routines are crucial for my son; when family invites us over for dinner at 6 p.m., that won’t work, as our son eats dinner at 4 p.m. and gets in the bath by 6 p.m. Just know things are different. I read this quote and it really resonated with me. “There is a ‘get it’ factor in parenting kids with autism… Those who get it become part of your inner circle. Those who don’t are weeded out, often through no particular fault of their own.” I need to find other people who get it. Connecting with other parents of kids with autism has been great. All of the parents we’ve spoken to have struggled with family and friends not reaching out to them. It’s a shame this happens. I still hope more loved ones will reconnect with us, but in the meantime, we as a family will move on and continue to focus on our magnificent son. New friendships and bonds will be made.

    Jacquelyn B

    The Challenges of Living With Psoriasis

    Living with psoriasis comes with a lot of baggage. I am not sure what is worse, the depression and anxiety that comes with it, or the way people look at my skin when I am flared. Psoriasis is a skin disease that causes red, itchy scaly patches, most commonly on the knees, elbows, trunk and scalp. It is not contagious. Psoriasis is a common, long-term chronic disease with no cure. It tends to go through cycles, flaring for a few weeks or months, then subsiding or going into remission. Treatments are available to help manage symptoms. You can incorporate lifestyle habits and coping strategies to help you live better with psoriasis, as stress is a big trigger for flare-ups. Many people who are susceptible to psoriasis may be free of symptoms for years and years until the disease is triggered by some environmental factor. A common psoriasis trigger can also be strep throat…and that’s what happened to me. I was diagnosed with guttate psoriasis when I was in high school at age 16 — I was actually very lucky I never shed, like many people shed with severe psoriasis or plaque psoriasis. I was already terribly bullied for being overweight, so why not add on an autoimmune disease that leaves red patches all over my body, drawing even more attention to me. I had no confidence what so ever. Such low self-esteem. I still have self-esteem issues I battle today. I was getting over strep throat when I was a teen and woke up one morning with my entire body covered in red patches. I thought I had a reaction to the antibiotic I was on for the strep. Literally the entire body from my scalp all the way down to my feet was covered. I would do all I could to cover myself. To hide. I barely owned tank tops, short sleeve shirts and shorts back then. Hiding myself in the summer, I felt ridiculous because I drew more attention to myself bundled up in the heat. I was miserable. I hated my skin. I was so embarrassed. So embarrassed to be seen. Then it started to affect my nails, as if it couldn’t get any worse. The anxiety having to go in public was really mentally exhausting. Nail psoriasis would cause the nail to detach from the nail bed. It would start by the nail pitting and detaching at the cuticle first. Sometimes it would start off with a tiny hole and get bigger by the day exposing my nail bed. It was so painful and then I felt I had to always hide my nails, as I would already hide my hands from the psoriasis covering it. My dermatologist is known to be the psoriasis guru and he has been so amazing over the years. I have been seeing him since I was 16, and I am 38 and still have him treat me. We had to go through a lot of trial and error to find the right medical grade ointments. Those can be very annoying because they are very greasy and messy feeling. It would leave grease stains on my clothing and sheets. Not to mention it’s very expensive, even with insurance. We decided to try a biologic drug used to treat moderate to severe psoriasis and psoriatic arthritis. I responded very well to this drug. That put me in remission for a while. I had some random patches here and there, but my body was not covered—my legs were clear—at the time my legs were awful…it was so great to be able to shave my legs without bleeding from cutting all the patches. I was able to wear skirts, shorts and dresses. I lost a lot of weight after high school and that seemed to help my skin, but I would still get terrible flares. I stopped the medication because it is a heavy duty drug and I wanted to wean off it and try something else. I would go twice a week to the doctor office for light box treatment and we found an ointment that seemed to help a lot. Phototherapy or light therapy is typically prescribed by a dermatologist. Phototherapy involves exposing the skin to ultraviolet light on a regular basis and under medical supervision. That seemed to help, also natural sunlight did wonders for my skin and helped to clear it. It was amazing how well the sun cleared up the psoriasis. Over the years I have tried my hardest to become more comfortable with it, especially since it is not as severe. I still would cover up with jean jackets, blazers and cardigans to cover my arms if we went out. When I was with my good friends and certain family members, I never felt the need to hide. I was a hairstylist and I would be self-conscious about my arms every so often, but tried my hardest to just accept it already. I figured it is what it is and I can’t let this ruin my career. You can also develop other forms of psoriasis over the years. There are five types of psoriasis — guttate, plaque, inverse, erythrodermic and pustular. I had developed plaque psoriasis along with my existing guttate psoriasis. Not to mention developing psoriatic arthritis, which is common for psoriasis patients; up to 30 percent of people with psoriasis get psoriatic arthritis. Psoriasis always made me feel so ugly, unfeminine and dirty. Made me feel like an outcast. When my depression was bad it really would really disrupt my life. I felt like I just wanted to never be seen. Just the looks I have been given over all the years, the stares, the whispers, laughing or the rude comments from people who think it’s appropriate to ask “what is that on your hands and arms, it looks painful.” The looks of disgust or the look of fear as if I was some contagious freak. That was probably the worst. Somedays I do not cover up and then I have days I do, it depends on the severity at the time. It is a rollercoaster of emotions. At 38 I still struggle with the psoriasis mentally and emotionally. I have come to terms it is forever, but you never get used to the awful flare-ups or people’s rude reactions and comments. Psoriasis is painful and uncomfortable. The year I got married I had my psoriasis pretty controlled. I actually felt my best mentally, emotionally and physically. The arms yet again were still visible with psoriasis, but I was OK with it. It wasn’t severe. We got married in Key West, Florida. We were out celebrating our wedding week. I felt so pretty that night…my long thick hair looked perfect, my makeup looked nice, I was wearing a short black sparkly dress and my sparkly black heels. As I was walking to the bar for a drink this very nice gay man stoped me and said to me “ I just wanted to stop you and say you are such a beautiful woman, and I am gay.” I can not tell you how amazing that felt. Some stranger stopping me to say something so kind, not to criticize me and ask about my skin (yes, that has happened). Literally this man gave me the best compliment. I gave him the biggest hug and thanked him! I felt ugly my whole life between my weight, then dealing with anorexia and bulimia and the psoriasis. Some people would say “have you tried lotion?” Really? Is that a joke? Or they would tell me their friend uses essential oils, or some skin care line. Maybe that works for others (I would be shocked), but the only thing that worked for me was medical grade products. Some people had good intentions with this as they only wanted to help, but boy did this get old. A month ago we were invited to our friends son’s birthday party in June. It was very warm and humid. I was skeptical of going. My arms were pretty bad at the time. I wore a short sleeve shirt and capri shorts. My legs were fine, but it was my arms. Very red and very noticeable. Our toddler was ready to leave and I was ready too and happy I made it through without noticing stares or comments from the guests. At least I thought so. Before leaving for the birthday party I had torn my closet apart trying to find a summery cover-up to hide my arms. Then I looked in mirror and thought… no, I don’t care who stares. This was my best friends’ house we were going to and I didn’t care if the guests were going to stare at me. I was talking with my best friend’s little sister, catching up as we haven’t seen each other in a while due to COVID. I went to hug her goodbye and then her husband was going to hug me and he stopped…. he made a disgusted face and said to me in front of everyone “what the hell is on your arms, is that poison ivy?” He scooted back from me, and continued to carry on with insulting me and embarrassing me. I was so mortified. Not only was I mortified, I was upset he would be so rude and so ignorant to say that and act in such a cruel way when I have always been very kind and respectful to him. It really took everything in me not to insult him. What kind of example would I be setting for my child if I did. His wife looked so embarrassed because of his behavior. It was not her fault her husband acted that way. He was really setting a terrible example as a father. My husband had to tell him it’s psoriasis and not contagious, then my husband made sure to say how rude he was and way to make me even more self-conscious. This is something I have endured for 23 years, and that reaction hit me really hard. I thought he was my friend. I was so upset and so very embarrassed. I cried as soon as we got home. It really made me feel so disgusted with my appearance  that he was just so appalled by me. This is what living with psoriasis is like. I have even had doctors ask what it was. How does a doctor not know? We learned about psoriasis in beauty school, but you are telling me a general practitioner and OB/GYN are oblivious to what it is. It is exhausting always having to explain my psoriasis. It’s exhausting having to explain I am not contagious and that it’s an autoimmune disease. I wish I could just get dressed without feeling the urge to hide myself—there is no simply getting dressed— I have to plan it out depending on the severity of my skin. I wish I didn’t have to blow off plans with friends or family and make up excuses, because I mentally cannot handle trying to hide and cover up, or the anxiety of people staring at me or making fun of me. I have said before: children can be mean, but adults are worse. Mean, disrespectful adults raise mean disrespectful children. People need to do better. Some people have no manners and respect anymore and think they can say whatever the hell they want. Didn’t their parents teach them not to stare, point or say rude offensive things to others? My son is 3 and was diagnosed with autism and childhood apraxia of speech. I don’t want to think about the ignorance he will have to handle in his life being different. All I can do is raise him to be kind and respectful. Every person is fighting a battle you know nothing about. Just be kind. You have no idea how hurtful your words can be to someone.