When I Felt Like My Well Had Run Dry for My Son With Autism

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My nearly 11-year-old son has an autism spectrum disorder diagnosis of PDD-NOS (pervasive developmental disorder not otherwise specified). This means basically that he’s somewhere on the autism spectrum with some things and typically developing with other things. He has gifts, he has challenges. This is how I choose to define it when asked by others what it means.

This kid has lived his 10 years with speech therapy, and IEPs, and behavior modifications, and social skills groups, and occupational therapy, and and and and… He has come so far in this decade of life.

A kid who couldn’t point to things with his index finger (or any other, for that matter) can now tell me the nuances of all the different Minecraft characters and show me the virtual world he has created within this game.

He’s incredibly smart in math. He knows the entire Beatles catalog forward and backward, complete with album listings and song run times. His phonetic reading skills are killer, but he has trouble with comprehension. He has no great friends, but no enemies either.

He is quite happy to be himself, doesn’t look to others outside our family for companionship or entertainment, but doesn’t eschew the company of others at all. His skin fits him well and he is comfortable in it.

Fifth grade has been a challenge. There’s lots of independent work to be done, Common Core has its own challenges for even kids who are considered gifted, and oh, the reading. The reading. My kid has tenuous social skills with real, live three-dimensional people; imagine him relating to a character written in a chapter book. With no pictures. And perhaps a regional dialect. Um, yeah, no.

He is rebelling in school. Not in the way where he becomes behavioral or inappropriate, but where he basically shuts down. He stops following along. It’s not a willful dissent all the time (sometimes I think it is), but mostly a coping mechanism. He gets spoken to at school. He gets spoken to at home. He loses privileges at home. His grades suffer at school. I’m doing fifth-grade work all over again. I passed that grade almost 30 years ago. I’m resigned to the fact I have to do it all again until he graduates high school. He needs the help, the redirection. I don’t do the work for him, but boy would it make my life easier if I did. “Preparing the child for the road is harder than preparing the road for the child,” I tell myself. “Stay the course. You do him no favors if you do everything for him.” But my well has run dry. I’m tired to the bones. I have two other children who need a mama. I neglect my own self-care to care for him. I’m becoming resentful. Self-hatred is at an all-time high.

I emailed the school psychologist during the winter break. I needed guidance. She knows my son well, and we are friendly enough at this point where outside of school meetings we function on a first name basis. “If you happen to check your work email during the break, and you have the inclination, would you, could you, please, call me? I need help,” I wrote. “I despise the way I act, the way I talk to this kid. He deserves better.” She called me. During her break from my kid and all the others that she nurtures and knows and ruminates on as she lies in bed at night. She also has her own. Her own kids, her own problems. When I saw her number on the caller ID, I’d have been no happier had it been Brad Pitt calling to shoot the sh*t.

I tell her my problem. I love this boy more than life itself, I would surrender my last breath to give him air. “What he needs is too much,” I say. “It’s not fair to my other two children. The highs with his successes are so high, but the lows of his struggles are so damn low. I will be doing this homework through twelfth grade and beyond,” I whined. Basically I am tired, and I do not know how not to be tired with a half a school year plus seven more (at least) school years left. I was looking ahead so far and dreading it.

This is what she said:

“Fairness does not mean equal. Fairness means that everyone gets what they need. Your other children have the wonderful quality of empathy that many adults do not possess, and it’s because of their brother. They get what they need from you and from others. No one else can be their mother.  But if you give up on this boy, if you decide that your well is in fact, dry, then this boy will be lost.

“You are the advocate, you are the one to teach him the oft-neglected skill of self-advocacy so that he can help himself. You are a teacher and a cheerleader. You are the optimist. You are also human. It’s normal to be tired. It gets better. Sometimes it gets worse before it gets better, but it gets better. Cheryl, you have no choice. It’s your job.”

And with that, I opened my dresser drawer, the one with the big girl panties in it, and I put them on. And I went in search of water to fill my well.

This well cannot run dry. This is my job. It will get better. I’m grateful for the reminder of someone who did not have to call me back, did not have to cheer me on, did not have to dig into her reserves to fill my well. But she did. I will start again after the break with renewed purpose and renewed gratitude for all those who have helped us on this journey.

And for the record, even with all the challenges, I would not change one damn thing about him or my other babies. We are all exactly as we are meant to be.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. 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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To the Teacher Who Suggested My Son With Autism Belonged in a World of Make Believe

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He was 5 years old and autistic but reachable. He was delayed, but came to your kindergarten class counting, knowing his alphabet and writing his name.

There were sensory issues that couldn’t be avoided in a large New York City classroom, and I didn’t blame you for that. I knew he didn’t fit neatly into any educational box but I had hope.

Two years earlier he wasn’t even speaking. I enrolled him in preschool, loaded his schedule with Music Together, Gymboree, speech and occupational therapies. I attended conferences to learn the latest educational techniques. I was grateful for every newly acquired skill.

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I wasn’t looking for miracles, just continued progress. I know better than most that hard work isn’t always rewarded. He has an older brother who will never walk or talk and his lifespan is fragile. I ached for my second son to have the opportunity to go to school with our neighbor’s kids.

My instincts allowed me to see my son’s strengths, every minor glimpse of his particular brand of brilliance, but it wasn’t without worry that he was placed in your inclusion class. You were the general education half of the teaching pair and you were initially supportive.

As the months passed, the dream faded to fantasy. How could there be nothing positive to report? He felt your frustrations — I assure you, his were greater. He grew less interested in learning and he ran from you. It was stressful.

While you went home each afternoon, he couldn’t escape from his troubles and neither could I.

When we had our annual meeting I sat with my notepad, avoiding eye contact. I scribbled your details of my son’s failures. He didn’t belong. You made this clear and you crossed the line. Many well-meaning teachers do. Perhaps I’ve done the same, before I had children. I hope not. I don’t know what possessed you to find these words.

“He needs to be in a classroom where they play Cinderella music all day.”

It stung, the way all unnecessarily painful things do.

I knew he loved the fair blonde princess. Personally, I was not a fan. But when your son is 5 and autistic but reachable, you follow his interests and you hope to be invited in. I was, and so I allowed him to take me places I didn’t want to go simply because he was willing to bring me with him.

Every day he begged me to find a new school. I searched because no matter how much progress he did or didn’t make, he deserved a legitimate education. Every child does. We left your school and our home to find an entirely new community. What lies ahead is an unknown. Some days I run towards it full force. Other days I stand paralyzed. I might fall. I might cry. I might wish the heartbreak away, but I will not give up on him. I will not encourage my son to quit.

It has been seven years since you spoke those words. They will never leave me. Parents of children with special needs are mindful during every inch of their journey — not a day goes by without a lesson learned.

You taught me to think about purposeful communication and the depth of my own words. As a special educator, I don’t believe it’s my job to alter a parent’s perception of their child. It wasn’t fair for you to suggest my son belonged in a world of make believe.

Perhaps you didn’t mean to encourage the amputation my 5-year-old’s future, but the next time you sit across from a parent, be careful what you teach.

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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To the Frightened Parent Sitting in the ICU

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As I write this, I’m sitting in the intensive care unit (ICU) listening to machines assist my daughter’s breathing. This is the sixth time (at least — maybe more) Jaycee has been in the ICU for an illness or emergency. The worst ICU stay included three weeks on a ventilator. The “best” ICU stay for her was just a one-night stay, after going into respiratory distress after a procedure. We’re no strangers to the ICU, though I would love to never return here again.

If you’ve never had a child in the ICU, let me paint a picture for you. It’s like a haunted house. You know going into it that something bad is going to happen, something that will scare you. Even when there’s nothing frightening at the moment, you’re on guard, anticipating the next scare. You know absolute relief will only come when you leave that place, but you don’t get to decide when you exit.

The characters in this haunted house don’t scare you with axes or other weapons. It’s syringes, IV sticks, tubes, machines, suctions, diagnoses or just the threat of these that make you scared.

A new parent coming to the ICU is like a small child who’s easy startled. Me, I’ve been through this haunted house a few times. Some things that would probably horrify first-timers don’t make me flinch at all. Being on bi-pap continuously doesn’t bother me much, although I know it’s not ideal. Holding my child down to assist with a necessary blood draw or cannula placement is second nature to me. But the ventilator — now that machine terrifies me. It means she’s dangerously close to an exit I hope I never see. Watching the placement of long tubes isn’t pleasant either. I find a way to shield my face so I won’t see what’s happening.

There are no ugly decorations or darkness in this place. In fact, it’s rarely ever dark. Instead, this haunted house has simple monitors displaying numbers that can give you a sense of relief or send you into a panic. The alarms, beeps, buzzes and dings at unexpected times can be frightening. The images of your child enduring such awful, unimaginable things as a result of those alarms will scare moms like me for weeks, months, even years to come.

But not everything in the ICU is terrible. There are some really nice people here. They are doctors, nurses, residents and respiratory therapists. They mean no harm when they’re part of the scary moments. They’re trying to save your child’s life, which sometimes calls for things that make us parents squeamish.

So if you ever find yourself in this place waiting for an exit, do whatever it takes to fight off all the fears, imagery, bad news and worst case scenarios. Find a positive song, verse, person or activity to help you through. It won’t be fun. It won’t be easy. But when you leave that haunted house holding your child’s hand, it will all be worth it.

This post originally appeared on A Special Purposed Life.

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How a Stranger’s Gift of a Quarter at the Hospital Changed My Life

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A lot of people have lost a child, but when you’re going through the loss yourself, it seems like you’re the only one in the entire world.

People don’t talk about it very much, and I get why they don’t.

This is my life.

The good news is I’ve been in contact with a lot of great women who have been supporting me through this lifelong journey. Unfortunately, they can support me because they, too, have lost a child.

Today I want to share with you the story about a woman who gave me a quarter.

But not just any quarter.

The day after my son, Alexander, passed away, we made our daily trip to the hospital to visit our other children, Max and Artemis.

Even after losing a child, life just continues on. So unfair.

While my husband, Ed, was parking the car, I took my travel mug inside to get hot water for my tea. It’s something that I do every morning.

Usually, I go up to the cashier, tell her that I just got hot water and go on my merry way.

But not today.

Today there was a new girl.

She told me my hot water would cost me 25 cents.

I didn’t have a problem with the fact that she wanted to charge me. I mean, they did have to pay for electricity to heat the water. The problem was that Ed had my wallet.

I didn’t even have 25 cents to my name.

In a daze, I told her I would have to dump out my water.

I felt beat down.

It wasn’t just a quarter.

It was a sign of the state of my life.

I couldn’t catch a break, nothing was going right.

Nothing.

Then, the faceless woman behind me reached into her purse and put a quarter in the cashier’s hand.

“I’ll pay for it,” she said.

I was moved to tears.

There was no way for this woman to know the effect her generous gift had made on my life.

Forever.

I’m not sure if she knew that her quarter was “not just a quarter” to me.

The moral of the story: Be kind. You never know if the person you gave a quarter to is mourning the loss of a child.

A version of this post originally appeared on Journeys of The Zoo.

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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I’ve Spent Most Days Trying to Anticipate Her Every Move. But Not Today.

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I’m perched on a faded park bench while a cover band plays Violent Femmes songs. Their music fills the hot and humid summer air as the sun beams down on my shoulders. In front of me, my daughter dances.

I watch her from my spot on the bench as she twirls — almost effortlessly — to the music.  She spins, her arms outstretched and open to the world around her. A contagious smile spreads across her face. I smile too as she claps her hands and stomps her feet to her very own rhythm. She runs in circles and squeals with delight. I watch her feet pound against the hot cement, and as the music increases in speed, so does her running and her laughter.

In my mind, this moment — my daughter carefree and dancing — is not supposed to be happening. Not long after Ceci was born, we learned that she had hypotonia, and the broad range of delays and abilities associated with this diagnosis made it quite possible that she may never walk or run or dance.

But she is, and I feel as if I am in a dream.

I want to join her on that hot cement dance floor, just a hand’s touch away. I want to be “right there” to catch if her if she falls. I want to be the first person to kiss a scraped up knee and wipe away any tears. I want to prevent her from possibly getting hurt because for two years, that’s what I have done. For two years, that’s who I was: her protector and her comforter.

And when she finally walked, I was by her side for each step she took— to help her if she stumbled, to hold her if her muscles tired out before her mind did. There’s not a mile nor an inch that she has traveled where I haven’t been at her side, prepared to soften any blow that may come her way.

I have spent most of my time anxiously anticipating every move my daughter makes. Part of me is thrilled at the idea that she is making tremendous progress — that she is walking and running and dancing. Another part of me is consumed with worry that she will get hurt, so I never move too far away from her — until today.

I prayed for this moment, for her to be able to walk and run and dance. I told myself that when this day came, I would cherish each step she took. I promised myself that I would never complain, like some parents do, about how “once they start walking, they just won’t stop.” I was OK with that. I would follow her to the ends of the Earth, cheering her on each step of the way. I still will.

But I know my place today. I am supposed to be more than an arm’s reach away from her, unable to catch her if she falls this time. Today, I am not supposed to be right at her side. This dance is hers and hers alone — each twirl, each clap, each smile and each giggle is hers. My place is on the bench, and that’s OK.

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. Check out our “Share Your Story” page for more about our submission guidelines.

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She Told Him She Couldn’t Handle a Trip to New York. So He Made This Promise.

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Photographer Brandon Stanton’s Humans of New York Facebook page shares striking photos with short quotes from people in New York City. We particularly loved a recent post (below) on the page, for highlighting the unconditional support and strength people can find in each other when going through a difficult time.

“I’ve been having nerve issues, and this past year it’s gotten so bad that it hurts too much for me to walk. It was...

Posted by Humans of New York on Wednesday, June 17, 2015

The Facebook post reads:

“I’ve been having nerve issues, and this past year it’s gotten so bad that it hurts too much for me to walk. It was completely unexpected. I’ve always been such an optimistic person, but now I’m fighting with depression. He’s doing everything he can to take my mind off of it. We’re not sure if I’m going to get better, but he’s planning a backpacking tour through Europe for when I do. And I told him that I didn’t think I could handle a visit to New York right now, but he told me that he’d push me around the whole city. And he has. And whenever I feel particularly down, he tells me that he’s not going anywhere, and how happy he is that he married me. Not long ago I had a particularly rough period, and when I was at one of my lowest moments, he asked if we could renew our vows.”

This is what we like to see in our Facebook newsfeed.

If you or someone you know needs help, please visit the National Suicide Prevention LifelineHead here for a list of crisis centers around the world.

Related: She Warned Her Blind Date About Her Wheelchair and Got the Perfect Response

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