In 5 Words, My Son With Autism Reminded Me I’m Doing Enough

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As a single parent of an autistic child, I am constantly hearing, “I don’t know how you do it.” Honestly, it’s just what I know. In the beginning, I’d see other families at the state autism center, occupational therapy and the special needs preschool and be in awe of both parents. I envied them since one parent had the other to lean on. I wanted to tell them how lucky they were to have each other. It’s not always easy to be thrown additional challenges on top of raising a child with disabilities when you’re a single parent. A year ago on diagnosis day, all I wanted was another person to be there and tell me everything was going to be OK.

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Here I am a year later, and I still question whether or not I’m doing everything I possibly can for my child. I can’t take him to every single appointment that’s recommended since I’m a single parent. I need to work and put food on the table. I structured my work hours to specifically allow time for his therapies. It’s difficult but worth it in the end. There have been times I have taken my son out to restaurants, shopping or to the movies with hesitation, wondering if he’ll have another meltdown. There have been bloody noses, scratches and broken items as a result. I’ve heard other people whisper, “Do you see that kid freaking out over there?” or “Wow, how spoiled is he?” I have never once wondered if I could handle all of this. It’s just something that I’ve come to know.

As a single parents, I sometimes ask myself if I’m doing everything I can to fill the gap. Am I being the best possible parent I can be? I feel that question has been answered by my amazing 4-year-old son, Sage, himself. He could not stop talking about the movie, “Hotel Transylvania 2.” So finally (with a lot of verbal prompting), we set out for a visit to the local theater. Sage was overwhelmingly excited when we got there. He ran through the hall and had trouble choosing concessions. We found our aisle seats and proceeded to get ready for the movie to start. After the movie began, I found myself running around the aisle, making sure I didn’t lose my son. He was playing hide-and-seek behind our seats, and I could overhear the people behind us getting frustrated as he crawled underneath their seats. Finally, once the movie started to pick up the plot, Sage found his seat and watched the movie.

The smile on his face was the most beautiful thing I had seen in a long time. He crawled over his seat and found his way into my lap where he finished the movie. Walking out of the movie theater as I held his hand, he leaned into me and said, “Mama, you my best friend.” My eyes filled with tears as I told him that he was mine, too. I smiled at him with tears in my eyes as he looked at me. I don’t think he realized how good it was to hear those five little words. Five simple little words that remind me why we do it all despite the challenges. The five little words that reaffirm a single parent’s work doesn’t go unnoticed. The five little words that touched my heart.

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When the Doctor Gave My Unborn Baby a Diagnosis I Couldn’t Believe

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What does that mean?

That was my response to the doctor who just delivered some of the most confusing, unexpected news I have ever received on July 6, 2015.

“Your baby tested positive for trisomy 21, which means you have a 99.9 percent chance of having a baby with Down syndrome.”

Surely this cannot be true. What are you talking about? This would never happen to me.

“We can discuss your options.” Options? I have options? Then do whatever you have to do to make this not true. I want that option.

I stumbled out of the doctor’s office that day knowing my world had been changed forever.

I told my husband that night about the news I received, and together the shock rocked our souls. We laid in bed that night staring at the ceiling, holding hands, sometimes crying, sometimes talking but definitely not sleeping. We just wanted out of this nightmare and for the sun to come up with this all gone.

He went to work the next day. I don’t know how. I headed to a friend’s house and paced around her kitchen without stopping. I was rocking in the fetal position standing up for the entire day. I didn’t know what I was going to do, but I was not going to do this. I was not going to be a mom to a child with Down syndrome. I couldn’t. My life was perfect and this child was going to be imperfect. I envisioned myself hostage to this child and that my life was over. I can’t do this, I can’t do this! That’s all I knew and felt right then.

Trauma. That’s what we were experiencing. An emergency visit to our counselor and pastoral friend confirmed that. I don’t think of trauma like this, but he was right. That first 24 hours was complete mental chaos; we were traumatized by this news. Looking back I cannot believe how much I lost control of my emotions and mental stability in those first days after hearing the news.

As the days went by, the reality sunk in and the emotions settled down. As the diagnosis was confirmed, the research began. I realized how uneducated I was on the subject and how much there was out there to learn. A lot of times the Internet can be a bad place to search for answers, but in this case, the Internet was such a blessing to my new reality. I learned the stories of so many other mothers who received the news as I did or found out their news in the hours after their baby’s birth. They felt the same fear and frustration and confusion I did. But they all, every last one of them, said that they wish they could’ve seen into the future and known then what they know now. It’s going to be OK. More than OK.

It’s going to be OK, it’s going to be OK. That’s what they all say. That’s what I keep telling myself. Sometimes I believe it, but most of the time I’m still convincing myself this is what’s true.

Three months later, I don’t believe anymore that I’m going to be held hostage by this child or that my life is over. I’m also fully aware that my life is far from perfect and that every child is imperfect. But I’m scared and restless as I wait for the unknown. I definitely don’t feel prepared or qualified to be the mom of a child with special needs.

But what I do know is that I’m going to love this child with every ounce of my being. And I’m going to hug him and kiss him every chance I get. And I’m going to help him pursue his dreams and watch him go places and experience things just like I’ll do for my other children. I’m going to encourage him and give him any wisdom I can. And most importantly I’m going to teach him that God loves him. I will be the best mom I know how to be.

But most of all, I’m going to be brave. I’m going to be brave for him. I’m going to be brave for him because he needs me to be brave for him. All our kids need their moms to be brave for them so they can be brave in this ugly and scary world.

My son, Cody, is going to make his celebrated arrival soon, and all I know is I’m ready to be his brave mama.

Follow this journey on Growing With Cody.

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To the Parent at School Who Doesn’t Understand My Child’s Autism

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Starting the new school year has been tricky for my son, C, and me. The move to a bigger class, a new classroom and a new teacher has been hard. It’s hard to let him go, knowing I’m not there to protect him from everything. I worry so much about him being judged by others. How much do people really understand? Do his classmates get cross at him because he can’t sit still? Do they get annoyed that he has zero volume control? And my worst fear — is he getting left on his own at playtime because no one want to play with a little boy who can be so demanding and bossy? Do the children all go home and complain about him to their parents? If they do, I hope they try to explain why he does these things and that he doesn’t mean to. But do they actually understand themselves? Are they in a place to explain?

All parents of autistic children want understanding and acceptance, but for this to happen, we need others to know about autism first. I’ve never told anyone at school that C is autistic, and the school can’t say anything. So how can I expect them not to think C is just naughty?

I wrote a letter to all the parents at C’s school to help them understand autism spectrum disorder and hopefully put them in a better position to explain it to their children. Whether I ever have the courage to send it is another matter, but here it is…

Dear parent,

My name is Lottie and I am the proud mommy of two little mini-beasts, C and G. I wanted to write a short letter to everyone in the school to explain a little about autism because C is autistic. Some of you many already know lots and others may know very little. Before I go on, please don’t think I’m being patronizing or condescending to any one of you. Autism is a hidden disability you’ve probably heard about, but you might not have direct experience with it.

Every parent wants their child to be accepted by their classmates. They want their child to enjoy school, make friends and be happy. One of my biggest fears is that C ends up hating school. Some children who are autistic end up getting homeschooled because they can’t cope with the school environment. I think this is sad because school can be a super place, but I can also see how it happens. Autistic children might get bullied at school more because other children don’t understand why they behave how they do. That’s why I’m writing this letter — so you have the knowledge needed to understand.

Children who are autistic want to join in, they want to play, they want to learn. But they just need a little more help and support. Many autistic children have sensory issues, which means they can seem rough during play or pushy in the lunch line. Big spaces, loud noises and bright lights affect them, and if they don’t have volume control, they might shout. They can have high anxiety levels and need to be in control, which could come across as bossy and demanding. Change can be extremely hard. They often need a fixed routine and a lot of warning before something happens. Transitioning between one activity to another can be tricky.

When children get overloaded, they often have meltdowns. These can seem like tantrums from the outside, but they’re anything but. It’s when they’ve become so overloaded by what’s going on around them that they can’t cope anymore. As a parent I find these extremely hard because they’re uncontrollable and can result in me being hit, kicked, screamed at and anything in range thrown at me. Never mind the fact that if they happen out in public, I’m judged and thought of as a bad parent.

C is just like any other 5-year-old. He wants his friends around to play, and he wants to go to other people’s houses and play. He wants to go to the park; he wants to go to birthday parties. But these simple activities can have a massive impact on him and us as a family. For example, going to a birthday party can take a whole week of preparation. He needs to know who will be there, where it will be and what will happen. And then once we arrive, it can take him ages to find the courage to walk in. The noise can be overwhelming. The excitement can be uncontrollable. He can manage about an hour before he stops listening to me, starts running around at 100 miles per hour, goes bright red and starts to sweat. These are signs of overload and a meltdown brewing. Because he’s only 5, he’s still too young to fully read the signs himself, so as a parent, I need to do this for him. I also need to help him learn how to manage himself. When it is time to leave? When it is time to go and quite literally sit in a dark room?

He’s already beginning to feel these signs, but he’s still too young to get it, so he doesn’t react in the safest possible way. A lot of autistic children are runners, and when they also have no sense of danger, it can be a stressful mix. When things are too much, quite often he just takes off. This is why if we’re talking on the playground and it seems like I’m only half listening, it’s because I’m watching the classroom door. If I don’t grab C as he comes out of the classroom, he’ll be off. Most of the time he’ll go back to the car and get in it, but if he’s already zoned out, he’ll just run straight past. Cars and roads won’t stop him!

So please don’t think C is bad, naughty or rude. I don’t want you to think I’m asking people to invite C over to play, or that I expect him to be invited to every party. I’d love to have his friends over to play and give him birthday parties but right now, I’m honestly not sure he or I could handle it. He’s doing really well at school, and that has a lot to do with the super staff and lovely children. I’m not after sympathy for either him or me — only understanding.

Thank you for taking the time to read this.

From,

A proud but worried mother

Follow this journey on Family Life and Autism.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with 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.

Lead photo source: Thinkstock Images

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The 9 Stages of My Daughter’s Unexpected Diagnosis

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I can still remember it like it was yesterday. The shock of it all was so surreal and yet frighteningly real at the same time. A doctor’s words forever changed my life, and I could do nothing but stand there, frozen, and wait for the realization of those words to hit me with all of the force of an oncoming freight train.

How many other people have been there?

Even though we know the unexpected is always possible, we somehow never think it will actually happen to us. Things like that only happen to other people, right? One moment life is as it should be, with all of its struggles and joys, and the next moment, your breath is taken away by the awareness of your new reality.

1. First, there is the delivery of the initial diagnosis.

Your fetus has a severe birth defect.

There are also associative complications.

…possible chance of fatality.

What is a person — never mind a soon-to-be parent — to do when faced with news like that?

Even though there had been a teeny, nagging voice in the back of my mind telling me something might be wrong with my baby, I never thought my biggest fear might actually become my new unwanted reality.

It had.

2. Then numbness sets in.

I somehow managed to process the initial news of the diagnosis, greatly helped by the support of my mother-in-law who had decided to join me for what I had thought would be a routine check-up. That brave woman asked all the questions I was too numb to formulate, knowing my husband and I would want to know everything so we could then make the best choice for our family. She also made sure she got me home safely, since I was in such a state of shock that I was incapable of functioning, and then also explained what we had learned to my husband, since I was still too numb to speak. I could only sit there and weep.

3. After the numbness comes an engulfing sense of despair.

When that numbness wore off about an hour later, feelings of overwhelming grief and hopelessness more potent than anything I had yet experienced set in, threatening to overwhelm me in its all-consuming and smothering embrace.

How could this have happened? What had I done wrong that had somehow harmed my baby? I thought it had to be my fault somehow.

4. Then comes anger.

It was not fair at all. What had my child done to deserve this? What had my husband and I done to deserve it? We were good people — surely that should count for something? Well-intentioned people would offer platitudes that were meant to soothe but only inflamed my indignation at the unfairness of it all.

I did not want to hear everything happens for a reason. I did not want to hear I’m sure it will all work out. I did not want to hear you’re young; you can always have another baby.

I wanted to hear I’m so sorry. I wanted to hear I can fix it.

I knew that last wish wouldn’t and couldn’t happen, which made me even angrier.

5. After anger, determination.

Eventually my anger morphed into determination — we would fight for our child with every ounce of our strength. We found specialists who could give us more information, worked with them to develop a plan of action and prepared for an uncertain and unknown future.

We decided we would submit to regular high-risk prenatal care in the hospital in which I would give birth, tour Children’s Hospital and meet with the surgical staff who would be caring for our child after she was born, and explore the neonatal intensive care unit (NICU) in which our baby would stay after her surgery, were she were able to survive it.

We learned all about the specifics of our baby’s diagnosis so we were as informed as two non-medical professionals could be, researched into what we could expect with a premature birth and made sure we would be close enough to the hospital at all times. We had no guarantees our efforts would bear desired fruit, but we knew we would not stop until every possible avenue had been exhausted.

We did it for our daughter.

6. Then comes waiting.

I hated waiting. I wanted to know my baby was going to be OK. We kept waiting for the remainder of the pregnancy, hoping I would somehow be able to last until I was at 38 weeks along so our daughter would have the best chance at survival.

7. And then endurance.

Unfortunately, our daughter was born prematurely, just as the doctors had warned us she most likely would be. She did survive her surgery and her stay in the NICU, and she came home a tiny, fragile little thing who had somehow beaten the odds.

The rollercoaster process of the unexpected premature delivery, surgery, hospital stay and then home care of a post-surgical and physically-compromised premature baby was harder than I had ever thought. Harder in some ways than the waiting.

But even in the midst of those long, exhausting and draining days, there was…

8. Unexpected joy.

In the midst of the numbness, despair, anger, determination, waiting and endurance, there were moments of unexpected joy.

The first time I saw my daughter’s sweet face in the ultrasound photo.

Hearing my daughter’s angry cries when she was born instead of the expected silence from her inability to breathe due to underdeveloped lungs.

Finally being able to hold my baby.

Watching my husband cradle his tiny daughter in the NICU, her frail body propped up with several pillows and with tubes and wires protruding from her body, rocking her, as he sang, “You Are My Sunshine” to his little girl.

Seeing my daughter take her first steps — something we were told might never be possible.

9. And hope.

No, not every story has a happy ending. I am so blessed this particular one did (my daughter is now 18, is vibrant and full of life, and continues to beat the odds every day), but I also personally know the sorrow of stories that don’t have their happy ending.

What I have learned, though, is that in the midst of all of the heartbreak, hardship and struggle, there is hope. When all is said and done, I am grateful for what I have gained through it.

Strength I never knew I had.

Endurance for what I thought would overwhelm me.

Compassion for those walking through similar hardships.

And an all-consuming love for my child.

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To the Waiter Who Made Me Feel Ashamed of My Feeding Tube

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More than a year ago, I had a permanent feeding tube placed into my stomach and intestines. I rely on it to give me nutrition that everybody else gets from eating food. The only difference is my nutrition is a special kind of formula, instead of fruits and veggies and anything else you eat by mouth.

My stomach is paralyzed and unable to digest regular food, unlike most other people. However, just like everybody else, I still need nutrition in order to live. I still need protein, vitamins and minerals. My food is just given to me in a different way. I am hooked up to my feeds 24 hours a day, except for the times I need to unhook it to push my medicines through. When I’m out of the house, you’ll see a backpack on my wheelchair, which contains my feeding pump.

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I’ve never looked at somebody in disgust while they’re eating food because I know that’s how they get their nutrition. I sort of expected it would be the same for me. There are certain times I have to turn my feeds off for a few seconds to put some medicine through with a small syringe. It’s discrete. I try to time it so it doesn’t happen in public.

But this time, I just happened to be at a restaurant. I thought I’d go to the bathroom to take my medicine, but the door was locked. So I did it right at the table where I was sitting. The people I was with knew it was part of my normal routine and carried on with our conversations. There was no mess, no huge ordeal and everything went smoothly. I looked around at the other tables and nobody seemed to notice…or so I thought.

A few minutes later, a waiter (who wasn’t our waiter) came over and asked if I could either go outside or go to the bathroom the next time I needed to put medicine in my tube because there were several complaints about how gross it was, and some people couldn’t even finish their meals. He then proceeded to ask me why would I go to a restaurant if I couldn’t eat.

Before I could even reply, he walked away. I looked around and noticed everybody was looking at me and suddenly felt a huge amount of guilt. I had just put the people I love in a difficult situation. I told myself the waiter must have been right. Why would I bother going to a restaurant if I couldn’t eat any of their food?

But at the same time, the waiter didn’t realize how hurtful his words were. I became so ashamed of my body and my feeding tube. I knew the feeding tube was there to help maintain my nutrition and keep me alive, but it also made me different from other people. Many strangers out in public would stare at the cord hanging out of my shirt and do a double take. I could hear the whispers and was aware of all the stares.

But then I decided, who cares? I’m going to embrace it. So what if there’s a big tube hanging out of my stomach and intestines, and I don’t mind if someone looks over when I’m discretely pushing medications through the tube while being clean. We all have something unique about us whether it’s visible or not. My feeding tube was the thing I needed to get nutrition, medications and fluids, so why should I be ashamed of something I needed to keep me alive? There’s no reason.

I’m no longer ashamed. I don’t even notice the stares anymore. I hope the waiter never personally has to experience a similar situation one day or watch someone he loves go through it. So thank you, waiter. You made me realize I shouldn’t be ashamed of something that I need in order for me to thrive.

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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Find Out If You’re Really OCD With Just 3 Questions

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You love color-coding your closet, arranging your room and hate when things are out of order — but how “OCD” are you really? Take this quiz to find out!

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