To the Dad Whose Guidance Helps Me Raise My Sons With Autism

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Sunday is Father’s Day. I’ve just moved across the country with my two autistic children who are beautiful, amazing and completely out sorts.

My father, my blood father, is not part of my life. He doesn’t want to be. That’s OK, though, because I have a father.

My father-in-law is a wonderful man. A man who walked into my life when my father walked out. His son, my husband, is an amazing man. I love him dearly. I want it to be clear I wish my husband a happy, happy Father’s Day and I love him. He is an amazing daddy.

This, however, goes out to my father-in-law. The dad who chose to love me.

Dad isn’t a man of words. He is a man who acts. You know the type who loves his children resiliently, and it’s just understood because he is good to them. He’s their friend. He listens.

Dad was the math teacher at our high school, so as you can imagine, he has a practical mind. When I talked to Dad about my boys’ autism diagnoses, he didn’t blink an eye. I know it was a surprise to him. No one thinks their grandkids are going to have a disability, but he has accepted them just as they are. When you’re a special needs family, you know what that means. Everywhere you turn there might be judgment, disapproval, “cures” and ideas about discipline. He and my mother-in-law have always just accepted them as they are.

My father-in-law has taught me many things that have helped me raise my two perfect boys who have autism.

These are some of the things he’s taught me. I hope his guidance will reassure those who never had the honor of a true father.

Breathe: You were given these children; you can handle it. They fit perfectly into your family.

Have a smile for your child no matter how frustrated you are. It’s your job to teach your children grace.

Pull your wisdom from who parented before you, but don’t let them tell you how to raise your children. They are yours.

Never, ever, ever let your frustration become an attack on your children. They have soft spirits.

Always have faith.

Apologize to your children when you are wrong, or they will never learn to apologize.

Sometimes an open heart means a broken heart. This applies to your children, too. But every moment is worth it.

You never regret love. That’s why we are here, to love others.

You must have someone you can be accountable to. Someone who will love you, support you and help you get on the right road.

Your past mistakes don’t have to be your future. You just have to get passed the past.

Dad, I am still a work in progress, but thank you.

Much like on the hardest days with my boys, when you met me, I was lost. You helped me by simply telling me I was enough. Plenty of people loved me; I believe God loved me, and I could love me. I remember the grace you have, and I know I’m blessed and I can do this.

I hope I am half the parent you didn’t have to be.

Happy Father’s Day,

Jo

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10 Things I’d Like People to Know About Living With a Chronic Illness

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I’m 17, going into my senior year of high school and I have mitochondrial disease. I am dependent upon feeding tubes, IV nutrition and countless medications to keep my body working every day. I need plenty of help just to get through the day, and it’s definitely not easy at all! Thankfully, I have a wonderful support system. Despite all of this, I try and live past my illness every day and continue to try and do the things I love even though my disease has taken a lot away from me. Here are the things I’d like you to understand about living with a chronic illness.

1. People always say, “You are too young to be in that much pain.” Chronic illnesses don’t discriminate. It doesn’t matter your what your age, race or gender is. It doesn’t matter where you live. All children, adolescents, young adults, adults and the elderly are at a risk of developing and managing a chronic illness.

2. “But you look perfectly fine.” That’s the problem, we aren’t “just fine.” Our disease is invisible to the naked eye, but if you turned our bodies inside out, you’d see the real damage our disease has caused us. The reason people with chronic illnesses look fine is because their illnesses can be invisible, so that’s why they’re also known as invisible illnesses.

3. We don’t cancel plans on purpose or because we don’t want to hang out with you. Trust me! We would do anything to be normal and just hang out with friends, but sometimes we are too sick to even get out of bed. Please understand we don’t mean to cancel at the last minute, but this disease effects us daily and how we feel changes daily. One day we’re able to go out to a movie with friends and then the next we’re lying in a hospital bed.

4. Lying in bed all day is not a luxury. Netflix and the Internet can only entertain you so much. After a few hours, you start to get bored and want to experience a typical life. One other thing: Don’t wish you were us and say you want to live like we do because it’s definitely not glamorous. Many of us would much rather be working or hanging out with friends.

5. “It’s all in your head.” This is a common saying a lot of people with chronic illnesses have heard. It’s not psychological. It’s real and causes very severe physical effects to the body.

6. Don’t pity us. We can do most everything you can do. We just have some extra challenges in the way. It may take some extra time, but we’ll get there eventually. Try not to focus on the “I can’t” and look at what an amazing person we really are. We get enough pity from random strangers, so we don’t need it from friends and family.

7. If you don’t know about our disease, just ask. We’ll be more than happy to explain it to you so you can understand more about our condition. Information found online may not be entirely accurate or related to the specific diagnosis we have. Never assume that you know it all when more than likely you don’t. So please don’t come up to us saying you’ve found our miracle cure because more than likely you haven’t.

8. Most importantly, we’re not lazy. People with chronic illness might also deal with chronic fatigue, and that just wears us out. Imagine if you were fighting a battle against your own body. Your body has to do both parts of the fighting here! Can you imagine how much energy that takes? We try to keep caught up with work and school and not stay in bed and sleep all the time, but it does get hard.

9. “If only you would exercise more.” I’ve heard this one too many times before. Your physical strength does play a role in chronic illnesses, but, trust me, we try to keep pushing through and do as much as we can. However, our disease can limit the amount of energy and strength we have so this makes exercising difficult. There are some chronic illnesses which require the patient to not exercise at all. The patient’s physician will be able to tell whether exercise would be beneficial.

10. “If only you were more positive, then you would feel better.” People with chronic illnesses are some of the bravest and happiest people I’ve ever met. They love life for what it is because they all know life is short and you don’t get an extra chance. It’s hard to be positive every day when nothing ever seems to be going right and you’re in so much pain. Everyone is entitled to feel negatively every once in a while.

Michaela Shelley the mighty

A version of this post originally appeared on It’s Not as Easy as You Think.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? 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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I Can’t See My Reflection. But Thanks to My Son, I Know I’m Beautiful.

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I’m a vampire. I can’t see my own reflection. In fact, I haven’t been able to see it since I was diagnosed with retinitis pigmentosa (RP) in 2008. My son, Asher, has no memory of me with vision. He has always accepted me the way I am. But I haven’t.

One of the toughest things to come to terms with when dealing with RP is the gradual decline in your ability to clearly focus on and define objects. I have struggled with my sight loss, and oftentimes caught myself wishing I could just do some simple tasks again like quickly glancing into a mirror with my own eyes to confirm that my outfit, make-up and hair all appear the way I envision them.

I have learned many adaptive techniques to confidently make myself presentable every day without assistance. But the one thing that has nagged at me is wondering exactly how I look now. I can picture my fashion choices, but I have difficulty comprehending my actual facial structure and physique. Do I still look as becoming as I did the day I first got married or even the day my son was born? My appearance is out of my sight, but it’s most certainly not out of my mind.

Coping with this reality lead me to also doubt my beauty. So for the past year, I’ve made a conscious effort to do some deep soul searching. My search came to a pleasant yet unexpected end one evening during bath time.

While rinsing the suds off my sweet little boy, Asher simply said, “Mom, you should wear that pretty dress again.”

“Which one? I have several pretty dresses?” I asked curiously.

“The one in the picture when you and Daddy got married,” Asher explained.

Then it donned on me that my husband and I had recently gotten a special wedding photo framed, commemorating our 15th wedding anniversary. It was a new addition to our living room. Still, I didn’t realize that Asher had been taking much notice of it.

“What made you think of that?” I asked.

“Because, Mommy,” he replied with the upmost sincerity, “because you’re so beautiful.”

In that instant, my son demonstrated his whole-hearted acceptance for who and how I am.

Through his simple words, I understood that when he looks at me, he sees a loving, caring, giving and capable parent. In short, he sees his mom, not his blind mom. That’s true beauty!

Ever since that memorable conversation, I recognize that my child is a far more accurate reflection of my soul than any image in a mirror could have ever provided. Through the eyes of my child, I learned that it’s not my disability that defines me, nor is it a barrier to who I am as a person.

My limited sight is just one part of how I am, not who I am. It is the light that shines from within me and is reflected in my son’s perspective, which tells me, inside and out, that I’m beautiful!

As a vampire, I may not have the ability to view my own reflection in a mirror. But I’m blessed to have the immortal, unconditional acceptance from my son who sees me more perfectly than I ever did.

April Meredith the mighty

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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12 Reasons This Special Needs Dad Deserves Recognition 365 Days a Year

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Father’s Day is Sunday, and here I am, giving my husband, Dave, dad props — although he deserves them year-round. (Truth: I’m more likely to be found pestering him about taking out the garbage.) Dave is an amazing father to both our kids. But he deserves special recognition for all that he does for our son, Max.

1. Because he regularly caters to Max’s wants and needs, whether it’s taking him on a joy trip to Chicago or a fire station, picking him up at school to go to a doctor’s appointment or just sitting with Max in our minivan in the driveway as he pretends to drive. Oh, and he makes up fun songs, too — cue: “We’re going to Chicaaaaaaago! And we’re gonna have a gooooooood time!”

2. Because from the get-go, he has been a hands-on dad. Even as other friends’ husbands didn’t do diapers, Dave did — and joked about Max’s man-sized poops. He fed Max and still helps him at mealtimes. He gave him baths as a little kid and now, showers. There is nothing this guy won’t do to care for this boy.

3. Because he has always accepted Max for who he is, instead of who he dreamed he would be. During Max’s first year, as I mourned what had happened to him, Dave kept telling me to look at the beautiful child that he was — and reminded me of his potential.

4. Because he has extreme patience for easing Max into new situations, or just hanging with him when Max opts out of an activity.

5. Because he doesn’t sit around talking about how he wishes he could do “typical” Daddy-son things, like toss around a football or play baseball, because he and Max create their own “typical”: They play T-ball, enjoy amusement park rides, go to street fairs and make fart and burp jokes.

6. Because he never gets tired of the physical labor, whether it’s lifting Max into the car (boyfriend is getting heavy!) or carrying Max around the deep end of the pool.

7. Because when Max decides he needs to do something again and again — say, ride the shuttle bus at a resort where we are on vacation or push an empty stroller around the block — Dave will endlessly do it with him, unlike Mommy who will inevitably say, “One more time and we’re done!”

8. Because when Max gets freaked out by a crowd or loud noises, Dave knows just how to kiss and cuddle him calm.

9. Because for years, he’s stayed up late to program words, phrases and photos into Max’s electronic devices to enable him to communicate.

10. Because, better than anyone in our family, Dave understands the importance of hair gel and has taught Max how to swipe it into his hair.

11. Because he loves — genuinely loves — to take Max on food adventures, just the two of them.

12. Because Max has decided that the perfect Father’s Day celebration is a movie (“Inside Out”) followed by bowling and sushi with Daddy, and Dave is happy to oblige. As he always is.

A version of this post originally appeared on Love That Max.

More posts from Love That Max:
Special needs motherhood, pretty much summed up in GIFs
22 free things, services and grants for kids with special needs
The very real monster in the dark

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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When a Customer Asked What Was Wrong With My Shaking Hands

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I expect the friendly concern: “Hey, are you OK? You’re shaking.”

Yup, I’m fine. Thanks for asking.

I welcome the questions: “I have a loved one with cerebral palsy, can you tell me about your experience?” “My spouse and I are looking into adopting a child with cerebral palsy, can you tell us a little bit about what to expect?” “I’m a healthcare student. Can you answer a few questions for me?”

Of course I can. Sincere questions deserve sincere answers. 

But what I cannot and will not accept are the accusations, the demands to know what’s “wrong” with me or even the well-intentioned, but unsolicited “sympathy.” 

Twelve years ago, I was a high school senior looking forward to a bright future. Just a few months earlier, at age 16, a doctor had diagnosed me with extremely mild cerebral palsy. Many people with cerebral palsy need varying amounts of assistance with walking, talking and other things we take for granted. My case is so mild I don’t need any accommodations, besides maybe a little grace from my P.E. teachers when I couldn’t quite keep up with my classmates. The actual diagnosis didn’t really affect my life; My parents and I were just glad to finally have an explanation for why I lacked gross-motor skills, tended to be hyper-flexible (even though that was a perk in dance and cheerleading!) or why my hands sometimes got the shakes. The diagnosis did not change my plans to go to college in the fall or to become a teacher, nor did it discourage me from playing tennis, taking dance lessons or working my part-time job at a department store. 

It was at that department store the following encounter took place: I was ringing up a purchase when I heard the sharp command, “Stop shaking!”

I looked up to see a man, probably a few years older than my own father, staring down at me in disgust.

“How much coffee have you had today?!” he demanded. 

I was 17, and I was supposed to be polite to customers even when they were rude, right? 

“Um, none?” I answered. (To this day, I don’t even like coffee!) 

“Well, what are you so nervous about?!”

Again, all I could reply was, “Nothing.” 

“What’s wrong with you?!”

By now, my heart was starting to race (making the shakes worse, of course), but it wasn’t because of fear. I was angry. How were my slightly-shaky hands affecting this guy? What right did he, a complete stranger, have to know about my coffee habits or any other area of my life? Why should I have to justify myself to him? 

I looked up at him. “Nothing is wrong with me. Would you like the receipt with you, or in the bag?”

Nothing was wrong with me. To this day, nothing is “wrong” with me. I hold a master’s degree and have my dream career. I run and lift weights to stay healthy. I help out with youth group at my church and love to read. I also happen to have mild cerebral palsy. It’s all part of who I am, and I refuse to apologize for it.

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What a Fellow Special Needs Mom Said About Kids Like My Daughter

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Encountering negativity is inevitable, but I feel the chances go up significantly when you have a family member with special needs. I instinctively knew this after my daughter was diagnosed with Aicardi syndrome and we began our new path in the world of disability. I knew we’d encounter uninformed, misinformed and thoughtless strangers along the way. I also knew I could handle the stares, ridiculous comments and discomfort of friends, family and strangers. After all, I think as humans we are generally uncomfortable with unfamiliar situations. We don’t always know how to react in the best, most positive, way. But what I didn’t expect was negativity from other parents of special needs children.

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Age 3

It happened at a parent group in an early intervention center. We met while our children participated in a group therapy session for toddlers. Our children were all nearing the age of 3, meaning it would soon be the school district’s responsibility to provide education and related services for them. The discussion among the mothers centered on preschool programs and was facilitated by a social worker. I typically didn’t say much at those meetings, but I liked the information.

Then, one of the mothers said she didn’t want her child in a classroom with children who sat in wheelchairs drooling. As I sat there hurt and stunned, the social worker giggled and told her she understood how she felt. The mother went on, explaining her reasoning, as I gathered up my bag and left the room to sit in the hall. It was the last parent meeting I attended there. Until my daughter aged out of group therapy, I read a book in the hallway during her sessions.

Looking back, I wish I had talked with that mother. I could have told her children like she described, children like my daughter, could benefit from being in a classroom with her children. I wish I had told the social worker that instead of giggling, perhaps she could have pointed out how beneficial the woman’s child could be to others. With children of different rates of development in the same classroom, they could learn compassion from each other. 

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Age 22

Having someone in a similar situation confront you with negativity is not something you’d expect, but it does happen. Over the past 22 years, I’ve felt it in person, I’ve seen it online and at events with parents of adults with special needs. I try to keep in mind that we are all human, and love our children no matter what their age and ability. We’re never going to like everyone we meet. We can, however, treat each other with kindness and civility, accepting we are all in a different stage of our journey. 

Avoiding negativity is hard, but not perpetuating it is possible.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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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