My husband doesn’t have a college degree. I’m not passing judgment, just supplying a bit of background information. You see, when I do something dumb, he sometimes makes a snarky comment about the “usefulness” of my degree. Or, if I share an anecdote about something ridiculous at work, he might snort incredulously, “And these people are college graduates?”
Truth be told, I can be a snob, too. I’m not above thinking my degree gives me an edge.
When I was pregnant, I felt a combination of fear and bravado. I’d never planned on having children (Note to self: a bachelor’s degree is not a contraceptive.), and I’d never thought of myself as a mother. But I had nine months to mentally prepare. I treated pregnancy like a 400-level course with childbirth as the final exam. I read all the books that I could. I researched like there could be a pop quiz at any moment.
As I imagined what my life was going to become, I often assured myself I could handle it. Why? Because I didn’t have just any old degree – I majored in education and then taught elementary children for almost seven years. I took graduate classes and participated in countless workshops, lectures and other forms of professional development. Surely, if anyone can be prepared for parenthood, it has to be a teacher, right?
See what I mean about some people with college degrees not being too bright?
I was an itinerant teacher back in my former life. That meant I traveled between classrooms and schools. In those seven years of teaching, I worked at fifteen different schools and taught thousands of different students. Now that I’ve learned of its prevalence, one might assume I interacted with at least a few students with autism spectrum disorder. I only remember one.
Now that I’m a mother, I realize how little I really know about anything. But if going to college and being a teacher prepared me for anything, it’s to be a lifelong learner. I’m not disappointed I don’t know it all. In fact, I look forward to learning and discovering new things with my child.
Becoming a parent, especially the parent of a child with autism, has been a humbling experience. These days, I often think how woefully unprepared I was for motherhood. It’s not the life I imagined while my son grew inside me. It was not the life I anticipated when he was born and hit those early developmental milestones. It’s not the life I expected when I mistook his spinning for dancing or believed that his interest in lining up objects was just how all children played.
It’s been three years since my son’s diagnosis. I cried that day, but not because the doctor confirmed what we already expected. I didn’t cry over the loss of the life I had been imagining. Instead, I cried when I heard the psychologist read remarks written by our son’s teacher on an evaluation form:
“Philip is easy to love.”
It doesn’t take a college degree to appreciate that.
The first friend I made in college turned out not to be a friend at all. Though his invasive touches didn’t leave a scratch on my skin, his betrayal of my trust was devastating. I couldn’t help but think that my inability to see had made me vulnerable, and for the first time in my life I began to hate my blindness.
The only lifeline I had at school was my a cappella group. But it was only November, they were acquaintances, not friends, and I couldn’t bring myself to tell them what had happened. I worried they would perceive me as immature, melodramatic and incapable of coping.
Much to their credit, the group intuitively learned never to playfully bear-hug me from behind or leave me stranded in unfamiliar spaces. They kept me close in noisy venues, looked out for me at parties and allocated more time and consideration when teaching me choreography. They were sensitive to the fact that, though I was typically affectionate and hands-on, there were exceptions. Abrupt contact sometimes alarmed me. Occasionally, and seemingly without reason, I shied away from their touches. Jostling crowds and small, cramped spaces made me nervous. I tended to panic when people I didn’t know invaded my space, something which, as a blind person who looked more like a young teenager than a college student, happened often.
By sophomore year, my a cappella compatriots and I, particularly our senior director, Andrea, had all become good friends. I began to feel at ease in my skin again, knowing that my well-being mattered to them.
Still, every so often, an unexpected trigger knocked me back a step.
The girls voted on a sundress for a cappella competition: skimpy, low-cut, spaghetti-strapped. For the past year, I’d managed to avoid wearing clothes that were even slightly revealing. Blindness had a disconcerting way of making me feel as though everyone was staring at me. The thought of being onstage, wearing so little and feeling so much, was terrifying. But I couldn’t voice my fears.
During dress rehearsal, several of the girls, doubtless picking up on my anxiety, loudly complimented my figure and whispered that the boys were ogling. Their well-meaning intervention only exacerbated my discomfort. By the end of the night, I was miserably overwhelmed.
As my fellow singers left in a spirited group, Andrea held me back. “This dress is really bothering you, isn’t it?” Draping her well-worn hoodie around my shoulders, she took my hand to guide me. “Let’s see what we can do.”
At her apartment, Andrea dished up a plate of chicken and pasta for me before sitting down with my dress and her sewing kit. She adjusted the spaghetti straps so the dress would sit higher, then closed the gap in front. Knowing that Andrea acknowledged my struggle and cared enough to remedy it comforted me as much as the altered dress.
While Andrea set out a tub of ice cream to thaw, I changed into one of her button-up flannel shirts and a pair of her sweats. Though I hadn’t planned to, I found myself confiding in her about what had happened freshman year, why I sometimes flinched and froze and acted out-of-sorts and how certain things, like the dress and the girls’ teasing comments, could bring everything back.
“Why didn’t you tell me?” Her tone was concerned, not at all accusatory.
“You hardly knew me when it happened. I was still the little blind freshman. I didn’t want anyone to feel sorry for me.”
“It’s not like that. I’m just mad, as your friend, that something bad and unfair happened to you.”
We were lying on her bed, side by side on our stomachs, not touching. Maybe she knew that, if she held me, her tenderness and compassion would almost certainly make me cry.
“I want to punch him in the mouth,” Andrea seethed.
I laughed. “You can’t protect me forever.”
“I want to, though.” There was no humor in her reply, only sincerity. She did touch me then, her hand running gently up and down my back. “None of us would ever let anyone hurt you. We’d kill them first.”
I nodded. I’d clung to that truth for over a year, leaning into its safety whenever I felt afraid or alone. Nonetheless, Andrea’s reassurance filled me with a deeper sense of security. She and the others would look out for me when I felt unable to look out for myself, and over time they would prove, though touch had hurt me, it could also help me heal.
Grateful, I turned onto my side and reached out. Andrea drew me in close, and we both held on.
The Mighty is asking its readers the following: Share with us the moment, if you’ve had it, where you knew everything was going to be OK. 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.
All marriages take work and commitment, especially when you throw kids into the mix. But if you and your spouse are parents to a child with special needs, maintaining a happy, healthy marriage can be more complicated.
The Mighty wanted to find out how couples balance their marriages with raising children with special needs, so we decided to reach out to the people who do it every day. We asked our readers to share their secrets to maintaining a strong marriage while parenting a child with special needs.
Here’s what we learned:
1. “Respect each other’s way of processing obstacles and challenges.” — Sue Rutan Donald
2. “The moment you lie down in bed is the moment you stop discussing therapies, night terrors and feeding issues. Allow your bedroom to be your partner’s and your space. Focus on you and your partner physically, emotionally and mentally.” — Amber Watrouse
4. “Humor, humor and more humor… with a side of bacon every now and then!” — Susan Crowe Brown
5. “Never blame one another. Realize you are walking the same path at the same time, so you may as well hold hands along the way.” — Kate Sytsma
6. “Date your spouse. Find the time to get put of the house for even a walk or a quick dinner. Talk often. Good, bad and indifferent communication opens doors that helps your marriage.” — Kerri Kane
7. “You just have to be your partner’s partner. When it’s time for him or her to break down a little bit… well, you just get stronger for them. They’ll do the same for you, when it’s your turn.” — Steve Johnson
8. “When things get stressful, just take a step back and soak in the sight of your spouse loving and adoring your child. In the end, that’s all that matters.” — Sherri Stock Baumgart
Before having my first child, I never knew the depth of love I would have for my son. It was quite unexpected. It’s was like having a part of me living outside my body. What happens to him, happens to me.
When you add to the fact that he is a special needs child, I turned into a momma bear protecting her baby cub. We wouldn’t even go to the park for fear of what might happen. After all, we had a ventilator and emergency equipment to contend with to justify my fear of the unknown.
Special needs moms share the same concerns all moms have, but the concerns are significantly heightened when you have a medically fragile child. I wasn’t given a handbook on how to deal with these emotions. I knew that a medical textbook stated my child had a “not compatible with life” diagnosis. With that knowledge, our child came home at 6 months old.
I knew of no one else on my journey. There was no one I could ask. No hanging out with the moms in the park comparing notes and asking for advice. Instead, I had a team of nurses and a doctor for almost every body part. But how to handle my emotions? That I would learn on my own.
One day, my son had a significant life threatening event and had to be taken to the hospital where they stabilized him. After a few short hours, we were able to take him home. We had a happy ending that day, but my emotions I felt didn’t let me forget.
And so, when I see a sniffle or hear a cough, my emotions go into hyper overdrive. I hold my breath and think of the worst case scenario. What if he’s getting a cold? What if we need to put him on the ventilator? What if we have to go to the doctor? How can we avoid him from catching something there?
Before allowing my emotions to get completely out of control, I try to remember to breathe then implement a quick prayer, even if only a few words long. And finally, watch my son’s symptoms to see if they progress. Many times, what I’m worried about doesn’t happen. The sniffle is a spring allergy or the runny nose is short lived.
Will these intense emotions lessen over the course of time? Probably not. We are mothers, after all. Can I learn to rest in prayer and past experience to help me overcome? Yes. And now with the age of Facebook, I’m no longer alone on this emotional journey. There are many groups where I can share my experiences or ask a question and receive amazing advice.
So, in the end, we are not alone in our journeys. What groups do you frequent? Where do you find inspiration? How do you handle your hyper emotions of being a special needs mom? I’d love to hear your ideas. Who knows, maybe they’ll appear in a future blog.
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.
I saw another article that claimed to solve the mystery of autism last week. This time, it was gestational diabetes.
It’s always something, isn’t it? Either autism is because of advanced paternal or maternal age, or the dot-com era or people who eat gluten. It’s the manufacturers who made Roundup.
(I’m not even sure what Roundup is. I’ll be right back.)
(Oh. It’s weed killer you use for gardening and stuff. No wonder I didn’t know what it was.)
I know it’s all in the name of research and ultimately it’s super-important stuff, but the subtext of these headlines feel, well, a little vengeful. They feel like accusations.
I’m not trying to argue we shouldn’t investigate the heck out of autism spectrum disorder. We most certainly should. We should research what’s causing it and fund the programs for it and do what it takes for people on the spectrum to lead full, productive, happy, meaningful lives.
But this undercurrent of blame hurts — a lot. It hurts to think a choice I did or didn’t make contributed to my son’s condition. It makes me feel hopeless.
Even though I know — I know — there’s nothing I could’ve done differently, I still pause when I read things like this. I hover over them for the tiniest second before I click on to something else.
And still I refer to the mini-checklist in my mind: nope, I didn’t have gestational diabetes. My husband, Joe, was not even 30 when Jack was born. Neither one of us are particularly savvy when it comes to technology, and I’ve never grown so much as a tomato on my own, so I never used Roundup.
On Mother’s Day in 2004, I gave birth to a 9-pound, 3-ounce baby boy. This boy was wired differently from the very beginning, and because of that we suspect genetics played a heavy role. That is our autism story, and I’m sticking to it.
But we all have our own stories to tell — our own pathway down the bumpy spectrum road. And each one is authentic and true and raw and sometimes, hilarious. Each one is simultaneously heartbreaking and heartwarming.
So how can science pin down a single cause, when autism hardly has a single story?
You know how with a kaleidoscope you can look inside and see a thousand colors and patterns all at once? And then if you turn the dial a little bit, the colors and shapes move, and everything looks completely different?
I think autism is like a kaleidoscope. It’s ever-changing and always shifting. It looks different to everyone.
And I think blame is a lot like a kaleidoscope, too. We can consider it from one angle, and feel pain and embarrassment and shame, or we can turn the dial just a smidge and know hope.
How can a 7-year-old girl wearing her first pair of dangly earrings so aptly describe her big brother’s anxiety?
“He just isn’t himself.”
Because his 12-year-old brother, Joey, Jack runs track on Wednesdays.
See, Jack hates sports. He really hates anything right now that doesn’t have to do with YouTube videos and Oreos and baking cakes. So we signed him up for Special Olympics track team. And he threw the biggest fit you’ve ever seen until Joey agreed to do it with him.
And during the first practice, Joey took off down the track, his neon yellow sneaker flashing. He looked back over his shoulder at his brother, and then slowed just enough for Jack to catch up. Jack jumped on his back, laughing.
If Jack believes he is fast — that he can run like the wind and feel the cool breeze of a New Hampshire spring in his face — well, that’s all Joey’s fault.
Because of our dog, Wolfie, he knows how it feels to cry into the furry neck of a patient, waiting puppy.
Because of my 6-year-old, Henry, he knows how to shout to be heard.
This weekend we had Jack’s birthday party. The extent to which my son obsessed over this event is difficult to put into words. Over and over and over and over, he wrote out long, messy lists and schedules and recipes and ingredients and more lists, until, frustrated beyond reason, I huddled in my bedroom and hid from him.
Then, about five days before, before he decided he needed to make blue cupcakes. Nothing but blue would do. We searched everywhere — Hannaford’s, Stop & Shop, Target — for blue cake mix. Then we tried Amazon. We found it.
Jack hovered over my shoulder while I sat at my computer and tried to add it to the cart. But it was considered an add-on — an item that’s so small you have to order a bunch of other things in order to buy it.
Jack started to jump and scream. I started to sweat.
Just as Jack and I were both about to lose our minds — albeit for very different reasons — my 9-year old, Charlie, walked into the office.
“Wait! Mom, why don’t you check the box that man Duff sent us? Maybe he gave us some blue mix.”
Sure enough, we dug around and found one. I nearly wept in gratitude. Thank you, Duff Goldman. Thank you, Charlie. I blame both of you for the lumpy blue cupcakes that stained Jack’s teeth when he smiled.
Then there’s Cody. Sweet, adorable, green-eyed Cody, the boy in Jack’s class who told another boy to leave Jack alone and stop calling him names. I blame Cody for being brave and honest and kind. I blame him for being one of Jack’s very first friends.
Then there’s Jack himself: the owner, the landlord, the keeper of the spectrum key. He never asked for this diagnosis. He never asked for a cure or for headlines or blame.
And he’s so much more than science.
He’s a boy who can’t understand what an add-on means when you shop on Amazon.
He’s a fifth-grader who longs to belong.
He’s a brother and a son, a track-runner and a blue cupcake-baker.
Like a kaleidoscope, he is colorful and beautiful and perplexing. Sometimes, he makes my eyes hurt. Sometimes, he makes my head hurt and other times, my heart.
As the world of science continues to tackle the hard job of figuring out where autism comes from, I’m going to continue turning the kaleidoscope in my hands so I can learn the patterns and colors and mystery right in front of my very eyes.
I’m going to celebrate the people – and puppies – responsible for Jack’s progress, his joy, his confidence and safety.
“Hey. That’s my friend. Don’t talk to him that way.”
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.
“So you just need to stay away from a lot of sugar and you’ll be fine?” “You just have to watch how much candy you eat, but that’s it, right?”
For nearly two decades, I’ve been asked questions like those at least once a week. Sometimes it’s by people who are just getting to know me, and other times it’s by complete strangers. I’ve been a type I diabetic for 16 years. Diagnosed during my sophomore year of college, I’ve learned how to live with this disease.
But it’s not the sugar intake I think about all the time. It’s not the pricking of my fingers six times a day or the guilt I feel about downing that second cookie when everyone around me has already eaten four. It’s the impact diabetes is beginning to have on my body.
The changes came slowly and without formality. For the first decade, I didn’t really notice anything. But in these last five years, some changes have reared their ugly heads. Who knew how little people wanted to talk or hear about them?
I switched from four to six daily insulin shots to an insulin pump seven years ago. It was a good thing. No, a great thing. I no longer had to take 50 shots a week, and it left me with much less to carry around.
But as a result, I’ve placed somewhere around 900 insulin pump insets in the fatty tissue around the mid-waist section of the stomach. It’s left me with bruising and scar nodules the size of silver dollars that won’t go away.
My feet are changing, too. I have severe swelling and fluid retention. And my toes often feel numb. My doctor says it’s likely nerve damage. There’s no cure. I can only resort to pain relief. And, oh the pain. It’s insane. My vision has decreased, but there’s no sign of blindness yet.
But I don’t sit around talking about this side of diabetes. Most diabetics don’t.
I’m thankful for a husband who “gets it.” He’s seen the worst of it and will surely see more.
Instead, I walk with the pain and inject with the scars. I silently pray for a cure, but realize it might not come so soon.
I don’t need folks to feel sorry for me. I’m just asking for more awareness. Awareness of the heart. Because each person with a chronic disease is experiencing something you might not realize. So have some heart.
I’m also asking for awareness about diabetes itself. Diabetes isn’t simple and easy. They’re so much more to it than denying yourself that piece of cake. Diabetes can hurt. It can wound. It can change everything.
The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? 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.