What It's Like to Be a Parent With Chronic PaIn

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I always had the idyllic dreams of adulthood: a career, a husband, a home and having children of my own. Little did I know, my life would be turned upside down by several rare illnesses that cause daily severe pain most people can’t even imagine.

emily and her son
Emily and her son.

I was lucky enough to accomplish some of these goals before my illnesses took hold, finishing a college degree and starting a successful professional career. After my third spinal surgery, a spinal fusion that ended in a rare condition called arachnoiditis, causing severe back and nerve pain, and affects functions like reflexes and temperature control, I was lucky enough to meet my husband. He fell in love with me even though I was using a walker and wearing a bulky back brace.

We talked a lot about having children. We both always knew this was something we had always wanted. But could we handle it? Could I handle it? Could my body handle it?

After much preparation meeting with high risk doctors, planning for help around the house and with the new baby we decided we were going to have a child. Our wish came true and almost four years ago we had a little boy. My pregnancy was wonderful. The hormones made the pain from my spinal cord injury and from Ehlers-Danlos syndrome almost non-existent. The relief from the pain was too good to be true. Almost immediately after giving birth, my pain started creeping back up. It honestly is much worse now than it was before I was pregnant.

I spent many days in a state of despair.

How am I going to care for this little person when most days I can barely care for myself?

But I have never been one to give up or give in, and decided I needed to suck it up and figure it out.

When he was an infant, I used pillows to get in a comfortable position to hold him, found the lightest stroller made, and regulated what pain medications were safe for breastfeeding. The lack of sleep didn’t help and many days my pain level was an eight out of 10. I thought infancy was hard, but then he became mobile, and of course heavier! I often have trouble keeping up with him, and we have ended up needing a lot of help by way of grandparents and daycare.

My pain gets worse because my conditions are degenerative, and as he grows, he becomes more active. Many times he will accidentally hurt me by a head butt that tweaks my neck, or a little elbow to my knee that just dislocated earlier that day. I try very hard to hide the tears, but sometimes he sees it. And he cries with me. When I had my cervical fusion surgery that required a neck brace, he was the first one to reprimand me “Mommy, you need to put your brace on!”

We are doing everything we can to give our son a life where he doesn’t have to worry about my pain. I never want him to feel like he needs to take care of me. I never want him to feel like he has hurt me. I want him to have a normal childhood without the restrictions of a mother in pain, and so he goes to soccer, he goes to play dates and we give him all of the love in the world.

When he looks at me each day with a sweet smile, gives me a kiss and says “I love you Mommy,” it is all so worth it.

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When a Peer Told Me I'd 'Die Alone' Because I'd Never Understand People

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One of the worst bullying experiences I’ve ever encountered happened almost 10 years ago, but I can still remember it like it was yesterday…

I was in high school and, while in the staircase after recess I was having a conversation with one of my friends about girls. He was telling me about a date he was recently on while I was sharing about wanting to find a relationship of my own one day. It was something I often daydreamed about. It was something I had wanted ever since starting high school.

While continuing our conversation one of my peers overheard our conversation and decided to butt in. She interrupted, and, in a condescending fashion, said I would die alone because I’d never be able to understand other people. That was one of the most gut-wrenching moments of my life. As silence consumed and I blacked out the world for a few minutes, I thought about an incident that had happened just months before, which made this situation even worse.

I had fallen into a trap by one of the popular girls in our high school who had told me she’d like to be my girlfriend. I told her I’d love that and at that moment thought we were in a relationship. Just a few days later, while asking her if she wanted to go on a date, she, in front of her friends, told me she was only kidding about wanting to be in a relationship with me. She laughed in my face while I walked away, fighting
back tears. My heart felt like it was beating out my chest.

I thought about saying something to a teacher but felt too embarrassed by both situations. At the time I thought they would laugh at me, feel sorry for me, pity me, I just didn’t know. I thought I was a loser, and for months after I had considered a life where I would have to embrace that I’d never be in a relationship, never get married, and never have a family of my own. I thought to myself, “Maybe I’ll get into
college and get a great job one day. Life won’t be that bad.”

Going into my senior year though, I was reminded of advice from a family member who said, “You can’t pass the time living your dreams in your sleep. You need to live
those dreams when you are awake.” I wanted to start my final year of high school off on as positive a note as possible. I went into my senior year as the president of our student council, captain of our varsity basketball team and lead in our school play.

The one moment that stood out the most that year though was when a month and a half in I started dating a classmate. I was in my first relationship. I was happy.

Today, even though I’m single as a 28-year-old adult on the autism spectrum, I’ve dated several women and have grown to be more confident in the dating world.

For those reading this I hope your loved ones, regardless of having autism or not, will be able to find someone out who will be there for them. Whether it is a relationship or even just a friendship… find those people who share similar interests to your loved ones, and never give up hope.

Don’t let naysayers or the bullies of the world hold you or your family down. But also remember, some of our loved ones do enjoy being alone at times, and that’s OK too. For those who ever feel alone though or just need a friend, I’m only a message away via my Facebook fan page.

October is National Bullying Prevention Month. Autism Speaks partnered with the National Center for Learning Disabilities, Pacer’s National Bullying Center and Ability Path to start a Special Needs Anti-Bullying Toolkit to help stop bullying. You can learn more about the kit here.

A version of this post appeared at KerryMagro.com.

Image via Thinkstock.

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When People See My Daughter With Down Syndrome and Ask 'How Do You Do It?'

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It’s no secret that my daughter was born with an extra chromosome. A new friend recently asked me about Lila after she met her, “Does your daughter have Down syndrome?”

I said, “yes,” then I told her all about Lila and how we learned her diagnosis after birth.

“I don’t know how you do it, I don’t know if I could,”she replied. I just smiled at her. That certainly wasn’t the first time I’ve heard that. It won’t be the last.

I was pumping gas at the gas station the other day. A little boy from Lila’s preschool came running up to the van. “I want to see Lila,” he said. I opened the door and he climbed in. He gave her a big hug and started exploring our van. “Bye Lila, see you tomorrow,” he said as he went back to his mom’s truck.

“Bye, Mikey,” she smiled.

Walking through Walmart, we usually hear at least one or two people say, “Hey, Lila!” Sometimes I ask her, “Who was that?” She will spout off their name and grin.

Everywhere we go, someone knows her. It is a requirement that she hug everyone in class once she starts giving out hugs. If you tell her your name, she will not forget it. At a restaurant the other day, she went up to a table full of elderly people. She went around the table hugging each one and telling them she loved them. Their reactions were priceless.

People are drawn to her. I think they see how she loves. And oh, how she loves. She doesn’t judge people by color or intelligence; she loves unconditionally. She is forgiving. She is kind (usually). When she hugs you, you feel it all the way to your heart. What kind of world would we be living in if we didn’t have people like her?

She is a teacher. Every day, I watch her teach this community, this world, what love really is. She has given us the gift of sight.

Now I see things I would have never seen before. I see smaller things and their importance. I see how unimportant some things are, like society’s standard of acceptance and beauty. I see the importance of loving everyone. I see the importance of teaching others to have compassion. I see the importance of stopping to smell the roses.

There are days when I am exhausted from chasing that tiny tornado around. She can destroy a room in a heartbeat. She delights in sticking her tongue out at people and throwing her shoes out of the van as I’m closing the door.

When someone asks me how I do it… it isn’t really a choice. I didn’t choose her, she was chosen for me. Thank goodness. My whole world is better because she’s in it. She is a world-changer in the best possible way.

I wouldn’t trade this gift, and all the extra it brings. I wouldn’t trade this gift of Lila for anything.

 

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To the Young Man With Down Syndrome Who Was Being Bullied at Work

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Dear Ryan,

I didn’t know what to expect when you quietly approached me after a keynote presentation I had given to a room filled with parents, educators and young self-advocates about bullying of students with disabilities. At first, you spoke hesitantly. I could feel there was something really bothering you. You explained, bit by bit, how you were being bullied at work by a colleague saying very hurtful things. When you shared that your boss had told you “to just ignore it,” I could see you knew how ineffective that advice had been.

I admired you as you said with a smile, how could you ignore this person who worked right next to you in a small space? I could tell you liked your job and that there were no negative feelings toward your coworker or boss. I felt that you simply wanted to work and feel good about being there.

When you shared that it helped to talk about it, your genuine goodness touched me. You weren’t asking for much, simply wanting to feel valued and respected. We talked about a couple of options, and by the end of the conversation, you said you would try the ideas and see what happened. You thanked me, and said you were grateful for being able to talk through your situation.

I thought that was it, the end of our conversation. But there was more, so much more. Your next words took me by surprise. “Before I leave, I want to tell you that when I think of you, I will be happy. I will feel happy.” I remember feeling humbled, smiling and thanking you. You then pointed to the projector screen with a picture of my son David, who was born with Down syndrome. I had shared with the audience that he has always been my inspiration for working to prevent bullying of students with disabilities. But after your next words, I became the quiet one.

You told me, “When I think of both of you, of him and you, I will feel happy.” I thanked you again, fighting the urge to cry at your unassuming, but powerful words. As a mom, your heartfelt statement from someone who I could see was an incredibly sincere, honest young man — who, more than likely, had your own share of heartache and struggles — deeply affected me. Yet, you weren’t done. In an increasingly confident manner you added, giving your words more explanation, “I will be happy when I think of both of you, because I know that you gave him (David) a beautiful life. Because of you, his is a beautiful life.”

You had drawn me in. I was no longer the one giving advice; I was now the one getting counsel and wisdom. You continued, “And in caring so much about him, you have also made my life more beautiful.”

It is a true testimony of your humanity that you can rise above your own hurdles as a young man with Down syndrome experiencing the emotional pain of being bullied, and celebrate my son, find joy in his life and express your thanks for my presentation. I forgot everything else around me because you expressed yourself so poetically, and that is an incredibly powerful statement of the value you bring to the lives of others.

I’m sorry you have been disrespected in your workplace. I hope that that changes soon. Anyone who is as kind as you deserves respect. Ryan, I may never be able tell you in person, but I want the world to know that because of those few moments with you, my life is now more beautiful, too. I will always remember you.

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When You Can't Just 'Push Through the Pain'

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This post may get a little soap-box-like, but it’s something I need to talk about because it’s become a huge issue for me.

So, most people have heard the phrases “pushing through pain,” “no pain, no gain” and similar ones.

But when you have chronic illnesses or any illness that leaves you physically or mentally, bodily exhausted these phrases are… Well, rather annoying and very, very wrong.

It’s something a doctor or specialist wanting you to do graded exercise therapy (GET) or start physical exercise would say: “You need to learn how to push through the pain, push past it and you’ll get stronger, control it and not have it control you!” 

Which is why we now have thousands of people who tried or were bullied into GET or a exercise routine and have become severely more debilitated and set back health- and body-wise years.

Because for many of us, pushing through the pain simply doesn’t work. Pushing your body to do anything more than it should can have devastating effects on your health and body. It could push you too far and completely disable you for days, weeks months or years.

Our bodies aren’t like a healthy person’s. They cannot cope with everyday tasks, let alone 30 minutes of cardio and physical exercise and the strain it puts our muscles under. Cannot cope with the moving, lifting and shifting our body’s need to do when exercising.

Our bodies will simply revolt protest and then literally disable themselves. And us. Because they should never ever be put under this kind of strain.

“Oh, but if you exercised more you could walk better, it’s because you don’t walk a lot that you can’t walk well, try walking more and you’ll be fine again..”

Nope. Nope with a massive dollop of, “no chance in the world, no way and never ever” on top.

We are sick. We are too sick to do washing up, brushing out hair, to get out of bed. To sick to eat, read, watch TV, write. But exercise is going to help us?

Would you say that to someone who has the flu, viral infection, measles, meningitis, sepsis… Would you say, “Oh go for a run, that’ll cure you!” It would never even be suggested! So why to us? 

Is it because our lack of body ability annoys you? Frustrates you? Are our limitations are seen as lazy as our illnesses last longer than a few weeks? 

Chronic illness is just that. It’s chronic, it’s all day every day and mostly forever. We are never ever going to be cured, not unless a super drug is invented. Which we would love and rush to have because we do not want to be like this.

To be too ill to do anything. To live properly, to do anything without it making us even sicker or having a massive flare. No one would wish that for themselves. It’s not exactly a childhood dream… “When I grow up I want to become sick, lay in bed all day in agony, exhausted, living in guilt that I am unable to be the mother, lover, sister, wife, daughter that’s expected of me and I want to be, and not able to do anything without causing my body to revolt against me.”

We are sometimes even subjected to this kind of thing in our own support groups and forums. Someone reaches out for help or support in a post, at their breaking point, in so much pain they’re devastated both physically and mentally. And so many people reach back and help, and are there and in joint understanding of comfort and words of support.

But then… someone comes out with this for this person reaching out for help: “Oh well, I don’t let the pain control me. I control my doing stuff with my kids/partner/job… I push through it and it’ll never ever beat me!”

I sit there looking at the comment and suddenly I can think of something I could push… And it ain’t the pain.

Some of us are more severe than others. Some are able to work still, or do things that others who are a bit more severe cannot even think about, let alone physically able to do.

People need to realize that just because you may be able to do something, that doesn’t mean others can. And it’s not because we are lazy or can’t be bothered but simply, we cannot. Much like a lot in life, not just illness.

I am definitely not suggesting any person’s illness isn’t just as important or as serious as mine, or should be taken lightly or without the same kind of respect and recognition. Just that for a lot of us, pushing through the pain is simply not an option. And we feel awful enough about it without judgment or phrases that just do not fit into our lives, our bodies or world around us anymore. 

We don’t need to feel any more isolated, alone, misunderstood or mentally anguished than we already do.

Please think before uttering such phrases, suggestions or comments to someone who is chronically ill, for us living in a world of such pain and our loved ones who are also affected by it. 

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5 Things I Learned After My Child’s Sensory Processing Disorder Diagnosis

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I sat down to write a piece on how a diagnosis doesn’t matter. But as I wrote, my confidence in my position faded.

I realized how much the diagnosis really did mean to our family.

My daughter has sensory processing disorder (SPD). That is her diagnosis.

She struggles with certain noises — most noises, actually. She doesn’t like to be touched or moved by anyone. She is easily overwhelmed by almost any environment other than home. Most stimulation she can handle in the moment, but she will crash from the intensity when she returns to home base. She often seems out of touch and difficult to reach.

She was only 3 when we found out. We’ve been told we were lucky to get her diagnosed so young. But I struggled. I didn’t feel “lucky.” I just didn’t want it to be true, no matter how hard our lives had become. I kept reading more and challenging each perspective. I’d say, “Well, this applies, but that doesn’t really fit.”

It’s been 10 months now; it’s finally sinking in. I still struggle with accepting that there is something “wrong” with her, but I feel better about it every day. In fact, I believe having a diagnosis has actually helped.

Here are five things I learned:

1. A diagnosis removes the blame.

Before we had a diagnosis, we were lost.

Life with our daughter had been an emotional roller coaster. Our relationship often felt broken. Her tantrums were escalating daily. It seemed impossible to connect with her. My husband and I couldn’t agree on how to parent her because most of what we tried didn’t work. Or, we weren’t consistent. We were overwhelmed, too.

I blamed everyone. I blamed my daughter for being “difficult.” I blamed my husband for not being supportive enough. Most of all, I blamed myself for not being an ideal mother. If I could have just been a little more patient, maybe she would have turned out differently. What if there was something wrong with my personality that I couldn’t “get along” with her?

I would look at my friends’ experiences and try to figure out what was wrong with our family. I’d watch people sail through the early months and years with simple, easy-to-handle babies and feel embarrassed that our family was such a mess. I could barely see through my jealousy and pain.

Having the diagnosis lifted the pressure off of all of us. She was not “difficult” and we were not “failures” as parents. We could all go back to seeing what we love about each other because what was tearing us apart wasn’t anyone’s fault. It’s just biology. A roll of the genetic dice.

2. A diagnosis provides a language.

A diagnosis provides words to describe something that has been there all along. Whether or not we had a name for what was distressing our daughter, it was there. It affected every single area of her life. It was keeping us from being close to her and providing her a safe, secure childhood.

Now knowing that it is SPD, we have learned the language that directly describes her symptoms. It is this education that allows us to identify what she is struggling with.

And once you know what’s going on, you can find a solution.

3. A diagnosis gets you help.

Something was desperately wrong. Everywhere we turned, our lives were falling apart. We just couldn’t quite put our finger on what it was. We wanted to fix it, needed to fix it, but we didn’t know how. I spent endless hours talking it through with my husband. We’d stay up late and hash out plans. It would work in the short term, but fall apart after a week.

It was in marriage counseling that our therapist read between the lines and saw that there was actually a problem with our daughter. She guided us to the appropriate resources for getting an assessment and treatment.

Having a diagnosis points you toward a specific solution to a specific problem. We were no longer floundering around in the dark trying to figure out a way to help our daughter. When she is overstimulated, I can offer some quiet time in her room or suggest wind-down activity. If she is having a tantrum, I can offer a deep, loving, belly-to-belly bear hug to normalize her senses.

We are not perfect; it takes a lot of extra work and presence of mind to keep an easily overwhelmed child calm. But finding a solution is so much easier now that we know what the problem is.

4. A diagnosis brings you closer.

I have felt so alone as a mother. Most people, including our family, haven’t been able to understand our challenges with our daughter. To the outside world, she seems normal. In public, she is able to mirror the behaviors of other kids her age. This discrepancy makes it impossible for people to understand why we were always exhausted and stressed and frustrated.

The very first book I read gave me such a sense of relief that there were other kids out there like our daughter and other parents out there who felt the same way. No one in our immediate circle faced a similar issue, so we were left feeling isolated, alone and misunderstood.

Our families stayed away for quite some time. Our parents took our daughter’s rejection of them personally, which widened the divide between us and them. They even blamed her behavior on our parenting style and us being overprotective.

Now we are able to use our new knowledge to help them relate better with her. We model the behaviors they need to use to develop a successful relationship. Slowly, we are all mending.

5. In some ways, the diagnosis doesn’t matter.

Most of time, we don’t use the words sensory processing disorder. We simply address what is happening inside her and give her the tools to work through it. I am cautious about using a label that may cause her to feel differently from other kids. She will have enough to deal with without adding that painful experience to her list.

At the end of the day, she is the same girl underneath the diagnosis. She is our daughter. She has a beautiful imagination and a sensitive side. She has an incredible memory and a sharp sense of humor. All the things that make her up have always been there, and will always be, label or not.

Lead photo source: Thinkstock Images

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