5 Reasons Why I'll Proudly Be My Brother's Caregiver

On many occasions throughout my life, people have asked me about my twin brother’s disability and how I’d handle it when we grew older. I explained to them that his autism could hinder him from being able to complete many age-appropriate tasks, but my parents and I were prepared for it. He doesn’t drive a car, have his own apartment or go out for coffee with friends.

When I was 22, I told my parents I’d be willing to take the responsibility of caring for Daniel after they were no longer able to. We completed all of the paperwork and made it official over my university’s spring break last year: I became Daniel’s legal back-up guardian. I still have a lot to be educated on, especially with his finances and how to handle them smoothly. My parents were proud of me for making such a big decision at a young age. It wasn’t a huge deal to me because I thought about it for years and realized all of the reasons why it was the right thing to do.

Here are the five reasons why I’ll proudly be my brother’s caregiver years down the road:

1. My twin brother and I know more about each other than anyone knows about us. We were each others’ first friend or “womb-mates,” as I like to call it. Even though he has autism, I can read him like a book. I can tell exactly how he’s feeling just by one expression on his face, while he can do the same for me.

Our nonverbal communication works in mysterious ways. We could get a point across to one another from opposite sides of the room. If I’m laughing, he’s laughing. If I’m crying, so is he. I understand his quirks, his likes and his dislikes, and I know how to handle things when his behavior gets out of hand.

2. My twin brother and I have a solid foundation of trust. Unfortunately, we’ve all heard horror stories about people with special needs getting taken advantage of financially, emotionally and physically. As long as my brother is in my care, I can assure he will not be taken advantage of in any way. With that said, I have a difficult time trusting others when it comes to caring for him. He has the utmost trust in me as well, and building that foundation of his trust took many years.

3. He’d receive the positive social interaction I want him to have. I have a few close friends who also treat Daniel with love and respect. Those friendships have lasted because they make an effort not only to socialize with me but with him as well. On our birthday, they bring both of us meaningful gifts. He’s never left out. When we go out as a group, whether it’s to see a movie or eat at a restaurant, I take him with me. It’s such a positive experience for him because he gets out of the house and interacts with people who treat him well. I believe he really makes progress with his communication barrier after spending a frequent night out.

4. He’ll never have to feel uncomfortable. When he eventually lives with me, he can live how he wants with little restriction. He’s an adult, and I want him to feel a sense of autonomy and independence. If he wants to prance around the house dressed like Indiana Jones or a superhero, that’s not a problem for me. He’s also used to being able to have a snack and play on his iPad when he wants to at home; many living facilities may not let him do so, and that’s something that could set his behavior off. Most importantly, he’ll have a place to feel safe.

5. It’s what my parents would want. My parents know how close my brother and I are. Far into the future, they’d be happy their children are looking out for one another. My brother and I give each other pure joy. All my parents have ever wanted was for us to be there for each other.

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.

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How Searching for a Special Needs School Brought Me Closer to My Husband

All marriages have ups and downs, and adding children can intensify whatever strengths or weaknesses already exist. But sometimes, if you’re lucky, this intensity can make a marriage stronger. 

For my husband and me, raising a child with a disability (in our case, high-functioning autism spectrum disorder), brought out differences in our parenting styles, fast. But in the end, our different perspectives enabled us to evaluate all of our options and come together for our son.

For example, although we had a good experience for the past three years at public school, kindergarten has been rough. We were afraid our son was beginning to fall through the cracks. He’s well-behaved and very bright, but definitely has learning issues and needs extra help emotionally and socially.   

When we spoke to his school, they told us their job was to bring special needs kids up to the grade-level minimum, but not to their full potential. For us, that was a clear signal it was time to go. 

My husband and I began to discuss our goals for a new school. We both expect our son to go to college. But my husband knew our son would need a smaller class size with teachers who would push him. It was important to him that our son was included. I knew he needed a school with a strong arts program and the space to be a goofy kid and tell poop jokes.

It didn’t take long for the process of researching and visiting schools to become stressful and overwhelming. I toured over 10 schools between December and April of this year. I’d made the initial assessment, and then together, my husband and I discussed the pros and cons. If we were interested, we made a follow-up appointment for my husband to take a tour.

My observations tended to be more intuitive. My husband’s were always more specific and detailed. But it turned out to be a perfect balance. Together we decided where to apply. Even though we had different reasons and thought processes, we generally came to the same conclusions. This way, it seemed, we always covered all our ground.

Through this process, we learned a lot about ourselves and about each other. I learned that my husband has insights into the schools and our son’s needs that I don’t have and vice versa.

My husband is a lot like our son in some important ways. He was different growing up. He needed extra help, and he felt like an outsider. So when he tells me how he thinks our son will react in certain educational environments, I listen to him. I’ve learned to trust his perspective, as different as it can be from mine. He trusts my instincts as well.

I also was different growing up. Though I didn’t have any specific learning disabilities, I now think I have sensory processing issues around sound and auditory information transfer. I’ve also got a mood disorder that has, thankfully, not shown up in our son. But I know what to look for. 

In trying to understand our son’s needs, I’ve developed more tolerance for my partner’s eccentricities as well. My husband needs his routines to feel safe, and in the past that’s made me feel like I’ve done something wrong. I now understand that it’s not about me. It’s the way he was built, and the good far outweighs the bad.

Finally, we’ve learned how important it is not just to tolerate, but to embrace each other’s point of view. When I started to really appreciate my husband’s differences instead of insisting that he think like me, it strengthened not only our ability to make decisions, but our relationship.

In the end, our son was accepted to a college prep/mixed disability special needs school with drama, art and music programs. Although we had different reasons for choosing to send him there, we were in total agreement.


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.

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To All Parents of Children With Autism Who Haven't Taken a Break Today

As parents of children with autism, we’re responsible for a lot.

I’m not saying all parents are not responsible for a lot, because they are too. All parents have the responsibility for caring for a little human life. That’s a big responsibility. But my fellow autism parents know that caring for a child with autism requires a little extra.

When I get up in the morning, I have to allow myself time to get ready for work, dress myself in clean clothes and find time to put makeup on and look like a human instead of someone who only got four hours of sleep.

I have to allow even more time to get my son up while trying to keep him calm and well-adjusted for his day. Getting him dressed sometimes requires the help of another adult. So does combing his hair and brushing his teeth. I try to keep his routine the same so I don’t induce meltdowns. He has to have his supplements and vitamins while I’m trying to pack his lunch and write notes to his teacher about anything that may have happened at home last night. We get him on the bus and hope he has a good day at his special education school.

Transitioning him from his school day to the rest of the day at home can be challenging. He’s restrained himself all day long and is now releasing himself at home. He is aggressive toward his brother. Meal times are difficult but need to be kept on a schedule. He needs sensory breaks often to get the stimulation he needs. He needs exercise or else he won’t be tired enough to sleep at bedtime. He is very attached and needs lots of hugging and cuddling throughout the evening. He doesn’t like to sleep alone and usually wants to spend most of the night asleep next to someone.

This is just a typical day, too. This doesn’t include therapies, doctor’s appointments or meltdowns that may last for hours and tire us both out.

When do you find time for yourself? It’s hard to take care of other people when you don’t find time to care for yourself. I struggle with this daily. I find myself exhausted every moment of every day. Even if I happen to get a full night’s sleep, I still wake up feeling mentally, physically and emotionally exhausted. Some evenings I don’t have the motivation to get up off of the couch to give my children a bath. Some nights I don’t want to be touched nonstop. (My son is extremely sensory seeking and is constantly touching me at all times. Just me and no one else.)

I often daydream of having a whole day to myself to do whatever I want. I want to take a long, hot bubble bath while sipping wine. I want to go out for hours and drink coffee while it’s still hot and go shopping. I want to lie on the couch and work on my laptop or do a cross-stitching project. These are all things that I want to do for myself.

And guess what? I deserve to do these things. And so do you. This is called self-care. It’s important.

Self-care is actually just as important as caring for your child. We want to give all of ourselves to our children. We want to be everything and comfort them and meet all of their needs at all times. We can and we do. But ask yourself this: are you meeting your own needs, too?

I know that I spend most of my spare time doing something for my children. I’m reading a book on autism or researching a new doctor, my son’s behavior, supplement or therapy. My days revolve around him, and I like it that way. I’m his mother, his parent, his advocate and his warrior.

But we need to take care of ourselves. We deserve a few moments of “me time” to help with our sanity. We deserve to take care of ourselves physically, whether it is going for a run, practicing yoga or lying on the couch and resting. We deserve to go out for coffee with a friend or on a date with our spouse.

Don’t feel guilty for taking a break and spending some time doing something for yourself. Everyone will understand. Your child will understand. It will help you to be the best you. If you can’t be the best you, you won’t be able to be the best for them.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio.

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Melissa's daughter

When Strangers Heard My Kid Scream Led Zeppelin in the Grocery Store

Although my daughter Zoey is considered nonverbal, music has helped her find her voice. This child can sing! But not all her songs are pretty ballads or catchy lullabies. Sometimes she sings in a high-pitched angry scream that sounds very much like a Led Zeppelin song.

Yesterday was that Zeppelin song. While we were at the grocery store, I was pushing around one of those carts with the car in front, and as soon as I stopped it, she got out. Did I forget to mention her nickname is Houdini? She can get out of any buckle or harness. We really don’t know how, other than the fact that she’s Houdini.

So there I am, chasing her through the produce section of the grocery store until I was finally able to scoop her up. But as I bolted to the checkout lane, she was singing Led Zeppelin’s “Immigrant Song” at the top of her lungs — you know, the chorus screaming part of the song. No, she wasn’t singing the actual song, but you can’t help hearing remnants of it in her constant scream.

I’m in the checkout lane waiting, groceries are on the belt and ready to go, and the screaming chorus continues while everyone turns to stare at us. Not a fun moment.

I keep looking at Zoey. I’m trying to get her to make eye contact so she can see I’m using the sign for “sit down” and “all done,” but her singing gets louder and louder until it was all you could hear throughout the grocery store.

The woman in front of me turns and looks my way to say, “It’s that time of the day, huh, Mom?” I smile, shake my head and think to myself, If you’re in the mood to hear Led Zeppelin, sure it’s that time of the day! 

I continue trying to sign and get her to look at me, but she isn’t having it. The young cashiers are chuckling and smiling, but I’m not.

Then I feel someone behind me put his hand on my shoulder and say, “You’re a great mom. You’re doing great!” Obviously a Zeppelin fan.

I thank him and say, “She has autism, and this is just a bit too much for her.”

He looks at me and says, “It’s OK, you’re both doing great!”

We left the store with all eyes on us, but we also left feeling OK. My eyes brimmed with tears as I thought of how this man had reached out to say I was doing a good job and I was a good mom.

We got to the car and I immediately put on “I Will See You Again” by Carrie Underwood, her “calm down song.” She finally stopped belting out the screaming chorus of Zeppelin’s “Immigrant Song” and instead was singing “Oh oh oh… oh oh oh.”

I think I prefer Carrie Underwood.

Follow this journey on Melissa’s Facebook page.

Why We Don't Need to Understand My Nonverbal Nephew

My nephew is 10 years old and of average height for his age. When he walks, it’s slow and unsteady. Looking at his waistline, it’s clear there’s some “stuff” going on: gastric/umbilical hernia in need of fixing (again) and an insulin pump on his waist pumping life-saving fluid into his body. Looking further down, pronounced coxa vara (a hip condition) and genu valgum (knock-knees) are visible. You can also see his flat feet with multiple scars from his clubbed foot operation.

He doesn’t talk except for a limited number of words. He throws tantrums like a 3-year-old with the added strength of a 10-year-old.

The list of diagnoses are almost endless: type 1 diabetes; possible FG syndrome; connective tissue disorder (most likely Loeys-Dietz syndrome); cardiac and pulmonary complications due to the connective tissue issues; autism spectrum disorder; mild-to-moderate intellectual disability; speech aphasia; hypothyroidism and more… He has around 10 specialist doctors at my last count. There are times it’s hard to comprehend why all these things happened to one small body.

But then he will show us he’s so much more than his diagnoses. Like when he switches on my computer, moves the pointer to press on the password tab and calls me, waiting for me to enter my password — the same way his 6-year-old brother does — only to push me away and continue to the desired folder filled with his favorite videos and music (interestingly, just like his brother does).

Or when he demands a hug from his brother because he really, really loves him. Then of course, there are the times he’ll hit and punch that same brother because he really, really doesn’t always love him.

His smile can demand a grin from the stuffiest stranger’s face, just like his tantrum (in the middle of a crowded shopping mall, of course!) can bring a frown and raised eyebrows to a sweet old granny’s face.

He’s joyous as much as angry. Demanding as well as accepting. Strong, oh so strong, but still so very fragile. (Three fractures in one year was truly enough.) He’s loving, kind, naughty, friendly, sarcastic (without uttering a single word) — he’s amazing.

You don’t need to understand him or his diagnoses. Just love him as he demands and deserves to be loved.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or illness. 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.

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dad and son sitting near the lake

20 Confessions of an Autism Dad

dad and son sitting near the lake We are tough. We are strong. We have it all together.

We are so full of it…

Here are my 20 confessions as an autism dad:

1. I have myself convinced that taking a big bite out of my son’s before-school donut before I give it to him is for his own health.

2. Sometimes I’m secretly happy he wants to leave parties so I have an excuse to leave, sit in the car and play Plants vs. Zombies on my iPhone.

3. Sometimes, for brownie points, I spray some Clorox on the kitchen counter right before my wife gets home from work so it smells like I was cleaning the house.

4. My wife bought me a robot to vacuum the pool because I never have time to vacuum it myself. I just spent a half-hour standing poolside and watching it work. Let that sink in a minute.

5. It’s becoming clear to me, for the rest of our lives, the bulk of the arguments I will have with my son will revolve around whether or not he has to go to the bathroom.

6. I’m seriously craving Chuck E. Cheese pizza for lunch.

7. You realize you might’ve gone overboard pumping up the whole Tooth Fairy experience when you catch your kid standing in front of a mirror with a bloody tissue trying to yank one of the suckers out of his head.

8. I’ve actually bought myself a donut as a reward for successfully navigating a social interaction involving small talk.

9. Sometimes I sit down sideways on the edge of my chair in front of my laptop with the intention of just checking email really quickly. Then, 20 minutes later, the throbbing pain through my twisted spine reminds me of my complete lack of self-discipline.

10. None of us really know what the hell we’re doing. Once you figure that out, everything becomes so much easier.

11. I didn’t even entertain the thought of waking him up to brush his teeth when he fell asleep playing in his bed at 7:30 p.m. He ate an apple… that’s like nature’s dental floss, right?

12. “He forgot his octopus”: The only explanation I could muster in response to my neighbor’s befuddled expression as my kid went sprinting out to the pool covered in bath bubbles.

13. I was just vacuuming the floors (because that’s how I roll) and had to pause to admire all the beautiful pictures of our family we’ve collected over the years. It took a while since they’re all stacked behind our couch in shattered and demolished picture frames.

14. My son got a little over-stimulated during a family party at our house and asked to go take a bath. I feigned disappointment and took the bullet… and enjoyed my beer quietly in the bathroom with my little soldier.

15. Whenever my wife makes me fold laundry, I always fold the towels first because they’re the easiest and make the pile go down the fastest. Then I get “distracted” and leave the small stuff for her.

16. Nothing tests your manhood better than your kid using perfect word structure to demand you belt out the Barney “I Love You” song on a crowded elevator.

17. I literally just spun three times in a circle in my living room trying to do eight different things at one time. My brain is oatmeal.

18. He just dozed off watching “Jay Jay the Jet Plane.” I’m currently battling the pleasure of an unexpected afternoon nap with the mind-numbing torture of listening to the “Jay Jay” theme song on a loop. But I dare not move.

19. I don’t even know what the stuff does, but sometimes I put my wife’s conditioner in my hair to prolong the peace and quiet of a shower.

20. I don’t pray enough. But when I do, it’s usually for the strength and discipline not to throw it all away and completely lose my mind if/when someone mistreats or disrespects my son.


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