Thanks, Jhanin, for sharing this with me.
I feel fortunate to share another incredible guest post with you this Father’s Day weekend. Thank you, Monica, for sharing your thoughtful and beautiful essay with us. Make sure to check out her site, http://www.butterflywheel.com for more where this came from.
Tribute To Special Needs Dads
by Monica J. Foster
It’s hard to really understand what the father of a child with a disability, or “special needs child” goes through unless we have been in their shoes. These dads, like my own, are there with their children giving a gift that no one else can give. They give comfort and reassurance that no matter what, everything will be okay. Sometimes dads pretend to be strong when deep down inside, they are uncertain or even terrified. They are the unsung heroes to special needs children. They are special needs fathers and dads.
Any male can become a parent. It takes a real man to be a father. And it takes a man, I think, of extraordinary stock to be a father to a special needs child. We deserve extraordinary after all, don’t we? When a child is sick, typically it is Mom who handles the care unless the mom decides to work while the father stays at home, or works from home.
Special needs moms are very special, but in the world of a child with a disability, Daddy is equally vital. Fathers tend to provide a calming and logical presence, to help bring some clarity to the fuzziness in the world, and help calm and reassure a child in a way no one else can.
In families with multiple children where one child is hospitalized or in need of regular care, usually it is dad who stays home with the other kids while mom is at the hospital with the sick child, unless there’s a relative to sit with the kids while they both go. Dad is the one holding down the fort, keeping the other kids safe and happy, and bringing the siblings to visit the sick brother or sister. Dad’s role is very often overlooked because he is so quiet and often working behind the scenes. In my dad’s case, he was a grade parent bringing cupcakes to school, taking me to school or on field trips around his Coast Guard base schedule, helping me get ready for school, while my mother worked and went to school to finish her degree. Other times, they worked as a team day and night investing in the best opportunities for my development inside and out. It made sense when my dad ended his career in the Coast Guard due to kidney disease and wasn’t totally ill quite yet, to be the house dad. And he did well, right by me. To my mother’s half dismay, I’m sure, I grew up to be a Daddy’s girl, still loving her very much, but bonded close to Daddy. I learned her head strong ways and some of his level-headedness. I learned to freak out first often, but after getting it out of the way, taking a problem apart one piece at a time to solve it.
In single parent situations, dads still play a critical role. From providing Mom with time off through visitation, to dads who are the full-time single parents, there are many great single fathers to special needs children who are priceless. I know a few of them myself and would stand by their fathering of their children with challenges through thick and thin. There are also amazing men who step up to the plate and assume the role of step parent to a special needs child. Not all men would want to take on such a role because it does require a lot of work and can be daunting. There are also men who choose to intentionally adopt special needs children. All dedicated, special needs fathers are amazing.
Special needs mothers are the ones who tend to discuss their children ad nauseum with pride, advocate fiercely and rally support around their children’s needs, while the fathers are generally more reserved but still intensely interested, watchful, and emotionally invested in the care of their children. While I’m sure Daddy had an overprotective streak, he was more likely to display a, “You ok? Well, get up and throw some dirt on it!” concern once he figured nothing was broken. He was the mild-mannered semi-’Good Cop’ when my mother was raking ‘experts’ over the coals for making daft assumptions about my challenges and abilities — often mixing up the two. Still, he knew how to pound a fist on the right desk at the right moment when it was needed.
Behind every special needs child, there is a team who has helped that child thrive: the doctors, many therapists, caring nurses, dedicated teachers, extended family, mothers — and our fathers, dads, daddies, pops, etc. On this Father’s Day, special needs fathers deserve extra praise and gratitude, a pat on the back or hug. But, if not on this Father’s Day, honor them every day for all they do, give and say. To every special needs father out there, the often unsung hero in a child’s life, thank you for loving your child with a disability as they are and rallying their best as a result of your protection, nurturing, encouragement and protection. Thanks for being there for us, and for giving us the love and support we need to blossom.
And thanks to the special needs grandpas out there, too, like my mom’s dad, Grandpa Tom — who, using his old N.C. mountain-raised ways, reminded me to stay ever strong inside, live with integrity, be my own person and never let the world stop me from being who I am. Love you both for being men among men who taught me there are men out there, also like my husband, who will love you for you – all of you, no matter what about your body doesn’t work or doesn’t exactly look like everyone else’s. Thanks for making me feel more myself and helping me to reach for more out of life.
Monica J. Foster, CC CVBC CPSS RM is known as The Life Beyond Limits Coach® and Inclusionista. A vibrant amputee on wheels and the daughter of a disabled veteran and retired public school teacher, Monica believes in living life beyond limits and that every single person has abilities and value to contribute to enhance humanity. Clients include people with disabilities (yes veterans too), moms of children with children with special needs and overwhelmed disability service providers. Monica is a certified in life, life purpose, career and vision board coaching at BUTTERFLYWHEEL® Motivation, Advocacy & Consulting (www.butterflywheel.com). Using coaching, vision board creation, and holistic energy support, she shows clients how to transform limitations and limiting beliefs into possibilities so they can lead more powerful lives. Monica is also a nationally sought-after inspirational speaker, diversity awareness trainer, writer and disability grant consultant passionate about social and community inclusion, healthy relationship support, anti-bullying initiatives and accessibility for all. She lives in North Carolina with her husband, Bryan and their rambunctious cat, Annabelle.
Growing up my dad used to tell us long, elaborate, wildly fantastical stories – at bedtime, on one of our many camping trips or basically anytime the mood struck him. I’m grateful to have inherited some of my dad’s story-telling genes and am equally happy to share another one of his tales with you (this time 100% true), about him and James.
Stopping To Smell The Roses
by Michael Gerrity
The Roman philosopher Seneca once said that a good memory is the best gift that you can give yourself and James has provided more than a precious few. One day sticks out in particular – I get a chuckle every time it comes to mind.
About four years ago when Michaela and Ryan were moving to Manhattan, I had James at my hotel in Times Square. I was in town on business and they were looking for apartments. I decided to take James to Toys R Us. At that point in his life he was most definitely not interested in the giant indoor ferris wheel so we ended up buying a basketball to take outside. I was wondering where we could toss it around when James came up with a great idea. If I would just stand on the corner of 51st and Broadway and make my arms into a hoop he could use me as a net. So for about 30 minutes James shot baskets using my face as a backboard. Even being in NYC we attracted a bit of attention, but we were creating a great memory and having a fantastic time.
After I was exhausted and dirty enough, I convinced James we should retire to our hotel. James agreed after finding out the hotel had Sponge Bob Square Pants on their TVs (apparently not something found on TV at home). We entered the lobby elevator – my room was on the 17th floor. As we entered we were followed by one of the hotel security staff – a big burly looking fellow and a tall young woman dressed in a chic black gown and carrying a dozen red roses. We said hello. Neither of them responded. Before we hit the fourth floor James had asked twice if he could smell the lady’s roses. She and the security man continued to stare at the elevator door without flinching, as if engrossed in some Escher drawing or a Broadway Play. It was bit uncomfortable as James continued to request a sniff, and as we approached the 8th floor they both kept staring straight ahead.
At this point I just wanted the ride to be over (desperately). Then James turned and looked up at me and said in a quiet, but crystal clear voice, “Grandpa I really wish I could smell those roses.” Now the silence from our elevator companions was nearly unbearable. Just when I thought I could take no more of their ignorance of James, the cool lady broke, bent down and said “Would you like to smell the roses?” It was all James wanted and he took one long sniff of sniffs. I could not help but notice the smile on the woman’s face as she watched James’s grateful reaction. From the corner of my eye I caught the big burly security man staring straight ahead and grinning from ear to ear.
Embarrassing? Sure. But it was also a most memorable and beautiful moment – especially to see how his quiet, innocent persistence brought some joy and smiles to others, despite themselves. Thanks James for helping us all “stop and smell the roses.”
I’m especially glad to have a guest post for tonight’s Top Ten – I’ve spent so much time reading this dad’s blog that I didn’t really get to my own today. People often ask me how I find the time to keep a blog and I’ll be the first to admit that my life is a whirlwind, but for the first time I found myself actually wanting to know, how does this guy find the time? The words that immediately come to mind while reading his stories are “strong, candid, heartfelt and inspirational,” though they just don’t seem to do justice to Rob Gorski.
About the author:
My name is Rob and I am the creator and author of the “Lost and Tired” blog and founder of Android4Autism. I’m also the 33 year old father of 3 boys on the Autism Spectrum. Gavin is 11, Elliott is 5 and Emmett John is 3. My amazing wife Lizze and I have been together for 10 years, married for the past 8. I was a Firefighter and Paramedic for many years until I was needed at home 24/7 after Lizze became ill. Things are very difficult and everyday seems to be more difficult than the last, however, we always somehow manage to survive. We aren’t a TV show and there are no actors. This is our struggle, our journey…and it’s all true. I am “Lost and Tired” and this is “My Reality #Autism.”
For more about this amazing family, go to http://lostandtired.com/about-rob-gorski/.
Top Ten: Things My Autistic Kids Wished You Knew (Guest Post)
Written by Rob Gorski (Lost and Tired) and dedicated to his amazingly beautiful children.
1. I’m sorry I have fits but I’m not a spoiled brat. I’m just so much younger on the inside than I am on the outside.
2. I’m easily overwhelmed because I see and hear everything. I hear the lights hum and clock tick. Everything is so loud it makes my head hurt all the time and my eyes hurt from all the bright lights.
3. I’m not stupid, I’m actually very smart. I just don’t learn the way you want me to. Please learn about Autism so you know how to help me better understand what you are trying to teach.
4. Please don’t be mad at mommy and daddy because we don’t come over for holidays or birthdays. They really want to go but I don’t do well at another person’s house. It’s too overwhelming for me and they know that. They don’t go because they love me, NOT because they don’t like you.
5. Please have patience with me. I try really hard to make good decisions but I can be very impulsive at times.
6. Yes, I have Autism but that doesn’t mean I’m less of a person because of it. If anything, I’m actually more of a person in spite of it.
7. My house might be messy sometimes. It’s because my mommy and daddy spend all their time trying to find new ways to help me or teach my brother to talk.
8. Just because I can’t talk doesn’t mean I don’t understand what you are saying. My feelings can be hurt just like yours.
9. I wish my mommy and daddy knew how much I love them. I have a really hard time with emotions and I don’t always like to be touched. But I love them more than anything in the world, even more then my Lego’s.
10. I know I can be frustrating but don’t tell me I won’t amount to anything because I have Autism. If you love and support me I WILL do great things in my life in spite of my challenges.
Other Must Read Posts:
Go to http://lostandtired.com/must-read-posts/ for a list of Rob’s most popular posts (including a couple that he wrote for CNN), though from what I see there are plenty of others worth reading. I was immensely touched by the raw emotion and candor expressed in Confessions Of A Special Needs Dad and can 100% commiserate with the need to just vent sometimes, without it being taken in any other way than purging feelings of frustration, helplessness and exhaustion. Some other favorite entries (so far) are The Age Gap and My Broken Heart.
Special needs moms google symptoms, write into message boards, trade stories and express their feelings openly to other mothers about their situations. I am ever so grateful to Rob for providing this important outlet and voice for special needs fathers, and have a feeling you will be hearing a lot more from him in the future.
by Vicki Forman
The night I went into labor with my first child, my husband Cliff was halfway through the book The Expectant Father. I timed my contractions and gazed at the book’s cover, a pin-striped shirt with a pastel baby rattle strategically tucked into the pocket where a pen or index card ought to go. “Isn’t it a little late to be reading that?” I asked.
As it turned out, when the labor ended more than fifteen hours later, Cliff couldn’t wait to get his hands on the baby. Me? I gave her a kiss and demanded a hamburger and fries. Let him pour on the love. I was starving.
Originally I asked my husband to write this column about special needs dads. “Who better to describe the world of special needs fathering?” I asked. “It’s your chance to sit down and give advice and counsel to all those other fathers out there.” But Cliff has navigated these waters his own way, the same as every other special needs father I know.
Special needs mamas trade articles, books, websites, names of specialists. We research and discuss how to get the best educational bang for our buck, what benefits are available to our kids. We call each other to talk about medications, doctors, educational plans. But the fathers are different. I know of only one support group in our area for special needs dads. Amidst the hundreds of websites for special needs mamas, I can think of only a handful written by, and for, the dads.
Maybe it’s because the moms are frantically sharing resources and information that special needs dads tend to stand back, watching, vigilant and aware in a different way. My husband used to spend his days making computer games for kids. The hours were long and the pay was good but the work itself became increasingly meaningless in the face of what was at home: a kid who would probably never play one of those games, and whose needs went far beyond tossing a ball in the front yard.
Many years ago, shortly after Evan was first born, we received a call from a doctor telling us our son might not make it through the night. We had already lost our daughter, Evan’s twin; the thought of saying goodbye to another child was more than I could bear. Where I had been strong and steadfast through that first week, Cliff had held back, watching, wondering, no doubt, about what to do with this new kind of fatherhood he’d encountered. Clearly we were very far from The Expectant Father and its pastel rattle.
And yet that night, the night Evan nearly didn’t make it, my husband proved yet again that he would not need a manual. While I fled Evan’s bedside, Cliff sat by the isolette, watched the monitor’s awful numbers, listened to the alarms sound over and over again. My husband held our son’s two-inch foot while I paced the hallway outside.
“I’m sorry,” I said when he emerged.
“For what?” he asked.
“For not being able to handle it.”
“It’s okay,” he said, his eyes red, but dry. “That’s why there are two of us.”
I know fathers who have made career changes to be both more flexible and more reliable for their special needs kids. I also know dads who have worked harder than ever to secure their child’s future. They are torn between being sitting by a hospital bedside or being at work. Often work wins.
This desire to work harder and secure a financial future, combined with the special needs mama’s ability to tackle the day to day management of the child’s schedule often removes the special needs dad from the mix. I know of one dad, when presented with an orange and a syringe and told he would have to learn how to give his daughter injections, replied, “Why? Isn’t my wife going to be giving the shots?” The nurse looked at him and said, “You are both her parents and I’m not allowed to let you leave until I know that you can both do this.”
In the world of special needs, the mamas may call the shots. But special needs dads learn, in their own way, how to give the shots too.
Like the moment my husband embraced his newborn daughter and I reached for the burger, I have also witnessed his tender, loving acceptance as a special needs dad. While I seek support to offset my fears, Cliff has embraced his imperfect son like nobody’s business. He gave Evan his first nickname (“Boysan”), wrestles with him on the floor, teaches him aikido moves and how to play the bongos. My son laughs to high heaven when he hears his father enter the room, and laughs even harder as soon as the ukelele playing or drumming begins.
My husband is quick to point out all the love I bring my son, all the smiles and laughter. It’s true. My son greets me every morning with a “mum-mum;” “da-da” is not yet part of his vocabulary. He laughs when he hears my voice and I know how to swing him better than anybody.
But know this: while I am on websites telling my story, writing about my son’s world, my husband is sitting right next to him, showing him the universe.
Vicki Forman is the author of This Lovely Life: A Memoir of Premature Motherhood and teaches creative writing at the University of Southern California. Her work has been nominated for a Pushcart and has appeared in Philosophical Mother, The Santa Monica Review, Writer to Writer andFaultline. She lives in Southern California with her husband and child.