A Letter to My Husband: Thank You for Being a Loving Special Needs Dad

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Dear Ralph,

I couldn’t have known when we married what a wonderful father you would become. I couldn’t have known we would have a medically fragile boy who would test our faith. I couldn’t have known your inquiring mind and ability to think outside the box would be such a blessing in raising our son.

I remember being in the hospital room when you picked up the manual to Samuel’s ventilator and studied each page. Soon, you were as versed in the ventilator as the respiratory therapist, understanding the meaning of terms like positive end-expiratory pressure (PEEP), pressure support and volume control. Oh, how I relied on your mechanical mind to navigate the technical aspects of our son’s care. 

Once we were home, you created ingenious methods of assisting in Samuel’s care. One favorite was the toy you attached to the oxygen tank. The lights of the spinner wand would light up automatically when we turned the oxygen tank on, reminding us to turn it off when we were done.

I remember when you attached a fishing rod to the IV pole and used two dog leashes to hold Samuel’s gastronomy tube when we moved him. All the nurses commented on how practical it was and how they wished all their kids could use it.   

I’m so thankful you are Samuel’s father. You have valiantly taken the night shift, listening and responding to our son’s heart rate and oxygen alarms. I rely on the calming effect you have on our son and love all the walks you take him on in the stroller.

You are the unsung hero in the journey of Samuel’s life. You have not only stayed by my side every step of the way, but have proved a solid commitment to our son. I could not be on this journey without you. Thank you for being an amazing, loving, kind-hearted and caring father. You are so appreciated not only on Father’s Day but every day, indeed, every hour.

Your Wife,

Evelyn

The Mighty wants to hear more about relationships and special needs parenting. Can you share a moment on your special needs journey that strengthened your relationship? 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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Photographer Captures Reality of His Dad’s Alzheimer’s in Striking Series

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For Mark Seymour, photography is more than just a profession or passion. It helped him cope with his father’s last few years of life.

When his dad, Ronnie Seymour, was diagnosed with Alzheimer’s disease five years ago, what had begun as Mark Seymour photographing his parents’ daily lives turned into a way to face and document his father’s experience with dementia. The result was a four-year photo series, “Remember Me,” (below), as well as a short film, “A Portrait of Ronnie.”

“[It was]… a difficult and painful project but something I felt compelled to do, bringing meaning not just to us as a family but so I could take something positive from this situation and use it to help raise the awareness of… what dementia does to a person and their family,” Seymour wrote on his Kickstarter campaign page.

Ronnie and his wife Winnie in February 2014
Ronnie playing the harmonica in May 2014
Ronnie a month before he passed away

Ronnie Seymour passed away in March 2015, but his legacy now lives on through his son’s black and white photographs. The photos (full series below) show Seymour’s disease’s progression, from his diagnosis to moving into a local care home, to his death this year.

“Taking the pictures was relatively easy,” Mark Seymour told The Mighty in an email. “The tears came at the editing stage, when confronted by [the photos] on my screen.”

Seymour’s photographs will be displayed at an exhibition in London this September that will coincide with World Alzheimer’s Month. Afterwards, he hopes to take his exhibition to local and regional areas. He told The Mighty he wants to give people “an awareness of what Alzheimer’s is really like and what stages the patient goes through.”

To see the story in pictures watch the video below:

 

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What I Think Everyone With a Mental Illness Needs to Know

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Dear Mental Illness Warriors,

I just want to tell all of you out there who have mental illnesses that you are loved. You are amazing, and you are my heroes.

What you go through on a daily basis and have gone through with your illness is hard, and you’re getting through it like a rock star. I am so proud of you for dealing with all you’ve dealt with.

The stigma you face is unbelievable, but you are overcoming it. You’re talking it out and doing whatever you can to help yourself. That is definitely something to be proud of, and in case no one has told you that in awhile, I’m telling you now that I am so very proud of you.

People who don’t have or understand mental illnesses may think it’s your fault. They may think because you have this kind of illness, that you are “bad,” “immoral,” “crazy,” “attention-seeking”… the list goes on. But I’m here to tell you that your mental illness is not your fault, and you are definitely not bad, immoral, crazy or attention-seeking. You are a person who happens to have a mental illness, and that’s nothing to be ashamed of. You did not ask for this. No one asks for any kind of illness.

I know having a mental illness affects your personality, behaviors, feelings and relationships, both with yourself and with others. That’s just the nature of the illness, and you can’t help it.

Don’t let anyone tell you you’re not worthy of help, treatment, love, or respect because of your illness. You are worthy of all of those things, but sometimes, you must fight to get them. Don’t give up. Keep fighting for what you deserve and don’t settle for anything less.

Don’t forget — you are not alone. You need not be ashamed and it’s not your fault.

I believe in you.

Sincerely,

Your fellow warrior, Megan

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8 Ways to Ask (and Not Ask) About Why I Look Different

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A friend recently asked me, “Lisa, how do you want people to approach the fact that you look different? What exactly would you like people to do or say when they meet you and are interested in learning about your disease (scleroderma)?” I’ve gotta say, it’s a stumper! Humans are curious creatures. It’s natural and healthy to wonder why people vary from the norm either in appearance or behavior.

I will attempt to answer this tricky question, but before I do, I must first give you a sampling of how I do not want people to approach the topic with me.

1. Blurting out, “What’s wrong with you?” or spontaneously asking, “Why are you sooooo skinny?”

Don’t go up to strangers and ask them personal questions about their appearance. It’s weird when some random patron at the grocery store stares at my splotchy, mangled hands as we examine the produce and says, “What’s wrong with your hands?” This person is not invested in my well-being. Their inquiry is blunt and off-putting. My fantasy response is, “I’m allergic to weird strangers who ask me intrusive questions.”

2. Exclaiming, “Congratulations! Do you know if you’re having a boy or a girl?” 

I have super skinny arms and legs but a disproportionally large mid-section. Possible contributing factors are: the aftermath of eight major abdominal surgeries, distention caused by scleroderma, my ostomy bag inflating, or my affinity for donuts and total lack of willpower.

3. Asking, “Are you a witch?”

4. Pretending to not notice I look different when meeting me, but determined not to pursue a friendship with me because I’m weird-looking.

It’s much easier to make a list of what not-to-do than to advise on the best way to handle this delicate situation. Through deep consideration, I devised the following guidelines:

1. Get to know me first.

If you meet someone in a social situation and get to know them as a person, then I think it is perfectly normal to ask them a few questions about his/her altered appearance. I recommend framing your conversation in the context of genuinely wanting to get to know them better.

2. Ease the blow.

It’s best to compliment someone first by saying, “You have gorgeous eyes, but what’s wrong with the rest of your face?” You’ve gotta soften the blow a little.

3. If I give you a clue, take it.

I try to give people overt clues about my disease. This saves us both a lot of awkward dancing. I have a magnet on my car that says “Cure Scleroderma.” When I go swimming, I always wear a Scleroderma Walk tee-shirt over my bathing suit. The silver lining in not being able to wear a cute bikini is that my tee shirts allow me to raise awareness for scleroderma, conceal my purple and red spots, allow people who meet me to immediately know what I have and go home and Google it if they so desire.

4. Emulate this third-grader.

I can think of no better way to describe how to approach me about my appearance than an interaction I had with a third-grader just this past fall. I had been working with this boy in a small group for several weeks. While dismissing the group, we had the following brief interaction:

Third-grader: Mrs. H, you’re beautiful! I mean really really beautiful! Honestly, you’re so beautiful, but I’ve been wondering, why are your wrists sooooo skinny?

Me: That’s a great question and I must tell you I am so impressed with the way you asked it! I know I look different, right? So here’s the deal: I have a problem with my skin that makes it much tighter than most people’s. That’s why my wrists look so skinny. My skin doesn’t stretch as much as it should. Does that make sense?

Third-grader: Yes. Does it hurt?

Me: Sometimes, but I’m really used to it so it doesn’t bother me so much.

Third-grader:  Oh. Like I said, you are really really beautiful, Mrs. H.

Mind blown! This third-grader just masterfully steered his way through a complicated question most adults are uncomfortable asking. He followed my prescribed guidelines to perfection:

-He waited several weeks and got to know me before asking me a personal question.

-He expressed interest in my well-being.

I must admit that I still don’t openly discuss my altered appearance with my kiddos. When a child asks, I answer with honesty, but I don’t bring it up. If I were truly fearless, I would ask my district if they would allow me to lead an assembly on “Embracing Our Differences.” I would boldly get up in front of the 600 students in my school and share my experiences in an age-appropriate presentation. I truly believe this would help our kids navigate these difficult issues that many of them face. Most cruel behavior stems from misunderstanding the differences that exist between us.

I would like all you readers out there to weigh in on this. I especially would love to hear from fellow teachers, former students and parents. Please take a moment to make a comment below.

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When the Director At My Son’s Special Needs Camp Called Him an Inconvenience

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There are times a child with autism may not fit in, even at a camp for children with special needs. It seems ridiculous, but it’s true.

When you’re in the heat of the moment, it’s hard to see or focus on anything but what’s happening right then and there. But hours, days, weeks and even years later, you can look back with some perspective and maybe even a little laugh.

Looking back now, I still feel the sting of the words. But I can also see and understand the ridiculousness of what happened.

I can laugh at the absurdity of the situation.

It’s sometimes hard to find where you fit in — typical or special, high or low, wherever you find yourself and your child. That elusive place where you are supposed to fit and want to fit can be hard to find. But we try.

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My son, Cooper, attended a summer camp for children with special needs one year. It was a reputable camp run by a therapist and parent of a child with autism. Cooper also went there for therapy, so he was not a stranger to them. He was new to the camp, though.

On the last day of camp, there was a “fun day” planned. The director and staff were excited about the inflatable slide and water games. It sounded like fun, and I truthfully thought he would enjoy or at least participate in parts of it.

Unfortunately, when I arrived that afternoon to pick him up, I was met by an upset camp director. Pointing her finger in my face and gesturing to all the other kids around, she informed me that my child, my son with autism and sensory issues attending her camp for children with special needs, was the only one out of all the children there who did not go down the slide.

Apparently, that was a problem.

She proceeded to tell me how even the child with this issue or that issue went down the slide. I was told Cooper refused repeatedly and eventually threw a fit and had to go inside. I was informed of how inconvenient that was for her and for the staff.

I stood there, stunned, apologizing for his behavior and telling her I really thought he would like it.

I left there crushed, heartbroken, angry and cussing a little bit.

I can look back now and see how absurd it was. This person who should have known better — who has probably fussed, complained and fought against the very thing she instinctively did herself — refused to accommodate and work with the needs of the child. She even went to the point of blaming the child.

It’s a difficult pattern to break. As much as we focus on correcting it, it will occasionally rear its ugly head.

It’s OK that Cooper didn’t go down the slide. I know that now, and I knew that then.

I don’t share this story for sympathy. I am sharing it to help everyone understand that sometimes we are judged and have a hard time fitting in, even in our own communities.

It will take a village working together for true change to occur and for it to become instinctive to bend and work with the child.

Autism awareness, acceptance and action begins with me. And you.

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The Moment My Dad Taught Me Not to Be Ashamed of Disability

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My father was born with hearing loss. In elementary school he was seated in the back of the class with a box that supposedly amplified sound so he could hear better. As many of you know, putting the child with hearing loss in the back of the class is possibly the worst idea ever. He spent years being pulled out to go to speech therapy while in elementary school. They even tried an experimental radiation treatment on my dad to cure his hearing problems.

Sometimes as a kid, he would sit on the curb of the street and wonder why he was born with a disability and wished it would go away.

I was fortunate to be born to a father who had these experiences.

When I was 2 years old I began showing signs of a central auditory processing disorder in the form of being a “late talker.” In third grade I was diagnosed with learning disabilities. Around the same time I began to stutter, which, like learning disabilities, is neurological in nature. I had a really difficult time in school and it wore on my self-worth and view of who I was and what I had to offer to the world.

Unlike many children with disabilities, I was born into a family where I wasn’t “special.” I was normal. My working middle-class parents already had a blueprint for understanding disability which was, “It is something you have so you deal with it.”

My parents showed me that the teachers who didn’t always accommodate me or instill self-esteem were full of pooh-pooh (trying to keep this clean for a family website). Above all, my dad knew what it felt like to feel isolated and he even still validates how difficult it was for me as a kid and relates to it personally. Because of his own experience as a child, my father knew what it took to have a child with disabilities.

My grandfather, who wasn’t necessarily warmest guy in the world, drove my dad over 40 miles in a 1949 Oldsmobile to get him the best possible assistance for his hearing loss. Between my own father’s day job and his night job doing janitorial work, he would drive me 40 miles to see my favorite speech therapist, Elaine. Of course he took the opportunity to nap in the waiting room, but he was there with me. Once, after waking him up, Elaine said, “You know, Jerry (my dad’s name), there are other speech therapists closer to you.” He replied “Yeah, but Nina likes you.”

My dad showed me having a disability was just another aspect of life and there wasn’t anything to be embarrassed about. When I was in the sixth grade he coached my Catholic Youth Organization girls’ softball team (see video for story).  He announced to the girls, “I’m deaf and you’re just going to have to speak up when you are talking to me.”

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Horrified he would talk about this in the open, I waited for the girls to laugh. Then, I realized they completely didn’t care. He wasn’t ashamed of his own disability, nor was he ashamed of mine. Now when I do stand up comedy or public speaking, one of the first things I convey to people is, “I stutter, and you’re just going to have to wait patiently for all my brilliant ideas.” This is a direct result of my father being my role model.

I realize not all you dads of kids with disabilities are lucky enough to have a disability yourself, but you can still model the pride, courage and hope my dad did. You will mess up sometimes and you will lose it. My family likes to laugh at the time when my father was teaching my brother how to use drafting tools and he threw an eraser across the room in frustration. What is more important than perfection is being authentic in your relationship with your child, with or without disabilities, and instilling the values you want your child to believe about themselves.

There are going to be peers, teachers and passersby who will make them feel badly about themselves. This means it’s your job to protect them and make them feel both special and normal simultaneously.

For all the dads who tell the jerks at the next table “What are you looking at?” when their child stimming away, happy Father’s Day!

For all the dads who bring us to our favorite fast food restaurant after whatever kind of therapy we have to go to, thank you!

For all the dads of kids with disabilities who coach our football teams to make sure a “wannabe Bill Belichick” isn’t undoing all the work you and your family have done, we love you!

We may not always be able to express it, but you have given us strength.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? 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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