5 ‘Helpful’ Responses to My Child’s Complex Issues That Don’t Help

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I believe one of the biggest challenges special needs parents face is trying to unravel the complex issues associated with our children. Sometimes it’s asking, “Why won’t he eat?” or “Why is she so anxious during social events?” Parents like my husband and me not only have to deal with issues such as these, but we’re also trying to understand everything associated with our son medically.

For example, a few years ago, my son started a new medication to treat his primary diagnosis, tuberous sclerosis complex (TSC). A year after starting this medication, he was seizure-free, but he also stopped eating. Feeding issues weren’t new to him, but giving up eating was, and we became concerned. After asking adults on the same medication and speaking to his clinic and nutritionist, we have a better understanding of how the medication may be affecting him and a plan to help him get the nutrition he needs, but we still don’t fully understand it. He could be refusing to eat because of his autism, medication or behavioral issues. We also realize we could be partly to blame for finicky eating habits.

It’s particularly difficult for us to understand how to manage issues like this, so when others ask questions or make suggestions, trying to explain it to them is almost impossible.

I know my husband and I aren’t the only parents exhausted by the questions and unwanted advice over subjects we’re trying to understand ourselves. I want to share a few insights about what it can feel like for special needs parents when conflicts arise over our child’s issues.

1: Unwarranted parenting advice makes us feel like we haven’t done enough for our children.

Although we’ve spent years with professionals to try to help our child work through various problems, there’s no magic fix. There will still be times when he has a meltdown, inflicts harm on himself or others and many other things we’d rather not see. This doesn’t grant anyone the right to offer advice when it isn’t needed. The truth is, we don’t like seeing our children struggle either. That’s why we work hard to help them. Don’t forget they’re often having trouble in ways we don’t understand.

2: Telling us what you think our child should or should not do causes unwanted stress.

There’s a party and all the kids are lined up, ready to play a game, and someone says, “Everyone plays, even (insert our child’s name here).” We’ve even been told we have to sing the “Happy Birthday” song to our son even though it causes him anxiety and will set off a meltdown. We do want to help our child test his boundaries, but we’re also well aware of those boundaries. We certainly don’t appreciate someone else making assumptions about what our child can or will do. Asking before assuming is always the best approach.

3: Pointing out our child’s issues is upsetting.

I don’t understand why others feel the need to point out our child’s issues. We’re obviously aware of these things; he’s our child. Instead, try acknowledging the good things our child is doing.

4: Trying to “fix” our child undermines our parenting.

Trying to “fix” things, especially without our consent, is not welcome. We aren’t neglecting our child when we choose not to do or offer things others may feel he needs. Sensory issues are usually behind the anxiety he feels over getting a haircut or being offered a new food (with a new look or texture), so unless you’re a expert on sensory or anxiety issues associated with autism, please stop. The best thing to do is ask, “How can I help?”

5:  Ignoring requests associated with our child will indeed cause friction in our relationships.

My late grandfather meant well when he would ask my son if his food was “good” every time my son sat at the table with him. My son’s response to the question was always the same: he’d scream and hit himself. This never stopped my grandfather from asking. Mealtime is usually the biggest cause of anxiety for our son. It takes a lot of effort to get him to sit at the table for a meal, and getting him to eat is an even bigger deal. After all the work involved, it would be undone with the same question from my grandfather: “Is that good?” Ignoring the obvious friction the question caused made mealtime a problem for all of us.

Sometimes an innocent question or action could cause anxiety for our child, so please respect our requests regarding him.

The bottom line is this: We need the support of those around us. We understand it’s hard for those who love our child to feel helpless because they want to help. The truth is, we feel helpless, too, but we’re doing our best even though we don’t have all the answers. We want to be trusted to know what’s best for our children. When we all work together, we have the best chance at helping these wonderful children have a happy future.

Follow this journey on Crossroad Trippers.

Lead photo source: Thinkstock Images

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To My Social Media Friends, From a Woman With Schizophrenia

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Dear social media friends,

When I was in fifth grade, there was a boy named Kenny who sat behind me. Kenny had been diagnosed as hyperactive. He was constantly drumming on this desk, kicked the seat in front of him and occasionally started talking in the middle of class.

One day the school psychologist called me out of class and asked me to help Kenny settle down so his behavior wasn’t so disruptive. Apparently Kenny had told the psychologist I was a person he trusted. As an 11-year-old girl, this felt like a huge responsibility. On one hand, I had compassion and empathy and didn’t want to see Kenny hurt or mistreated. On the other, if I showed him too much attention I would be the object of cruel jokes by my classmates.

After that day, I occasionally told Kenny to settle down in class, but I didn’t show him too much kindness. If I could go back in time, I would hold his hands to keep them still, sit with him in the lunch room and try my best to be a calming presence and friend.

The thought of Kenny struggling with his illness so publicly, but all alone, makes my heart hurt.

It’s with the knowledge of this experience that I write to you about my own illness, paranoid schizophrenia. I’ve noticed any time a close friend of mine or family member posts the words paranoid schizophrenia on one of my social media sites, many of you unfriend or block me.

I realize there’s a great deal of misinformation and stereotypes that surround paranoid schizophrenia. I realize it may seem scary or weird to have a “friend” with that diagnosis. But I ask you to please give me a chance to dispel the myths surrounding my illness rather than shut me out altogether. 

The world of social media is frequently painful for me. I see people with breast cancer, heart disease and other illnesses receive so much support, good will and even fundraisers to offset their treatment. I can’t help but feel a little lost and hurt by a “community” that rallies around a person with one illness while completely locking out someone with another.

I’m not asking you to feel sorry for me. I’m asking you for a small opening. I’m asking for the opportunity to show you the truth about someone living with paranoid schizophrenia. There are not too many times when we get the chance to make a choice that has a lasting impact on someone else’s life and well-being. You have that chance with me. If you decide to unfriend or block me, I can only hope someday you’ll come around. You might see me as I see Kenny now.  

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When Doctors Made a Crushing Comment About My Symptoms

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I was recently admitted to the hospital for four days. I was in a high acuity room, which is somewhere between standard admission and intensive care. Initially, I felt well cared for, despite repeatedly being given things I was allergic to, but we’ll save that for another day.

Then, on the third day during rounds, the doctors told me they didn’t know what was wrong, but there may be a “psychological component,” and either way, I would be going home soon. I was caught off guard and managed to get a meek “OK” out before they left my room. After thinking a moment, I requested just one doctor come back to speak with me about their decision. The doctor explained they felt I was sick for so long that I got used to it and wasn’t trying hard enough. Suddenly, and quite unexpectedly, I began crying. Well, not just crying. It was loud, “I-can’t-make-intelligible-words” sobbing. In between sobs, I tried to say, “I just want to play with my son again. I really feel I’m trying hard,” and continued to sob loudly after the doctor left for over an hour.

I have had many friends and strangers tell me stories about doctors telling them their illnesses were all in their heads. I had never heard that myself. Even though I had several diagnoses, I figured at some point in my life I would hear this, too. Having that forethought, I thought I would handle it well. But I didn’t. I shut down, was deeply depressed and barely spoke for two days. I left the hospital just as sick as I went in, and on top of that, I felt terrible about myself.

I saw how damaging that simple statement had been. My husband offered evidence of how hard I’ve been trying, and it was possible the doctors felt a need to give a diagnosis before I left. I have left hospitals many times with the “I don’t know” statement. While that can be disheartening, it’s not so crushing as “It’s in your head.”

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I don’t expect everyone to know what’s wrong with me all of the time. After all, doctors are human, too. I know I’m quite complicated with five autoimmune diseases and have grown accustomed to the “I don’t know” response.

The “It’s in your head” statement is counterproductive and painful. This statement puts the blame back on you, the patient. It says the problem is not in the mechanics of your body; it’s inherent in who you are. You’re not trying hard enough to be well. I’ve either faked a mountain of lab tests, imaging, respiratory tests, vitals and nurses rushing to alarms, or I don’t warrant enough concern, simply because my symptoms don’t fit a clear textbook pattern. Just because they don’t fit together, doesn’t mean I don’t feel their consequences.

I understand this is not the way they hoped it would come across, but this is the way it is often perceived. I’m not one to complain without any ideas for solutions, so I’ll offer this: I would much prefer to be told, “I’d like to start you off with a counselor to speak with, since being ill for so long can be difficult and stressful.” This would get me to the same end goal of receiving counseling without the added feeling of ineptitude and being unheard. It refocuses the problem on your body rather than who I am as a person. Lastly, if doctors are really unsure about your symptoms, that should be their response.

Follow this journey on Tiny Salutations.

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Why I’m Speaking Out About Comic Strips Like This One

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When perusing the funny pages in the daily paper, I have few expectations. I look for a quick chuckle, and maybe enjoy a good a punchline. The last thing I expect is to feel like I actually got punched.

That’s what happened on September 14th when I read this B.C. comic strip. At first I thought to myself, “Jana, quit overreacting! It’s just a joke. It isn’t personal.”

Screenshot taken from Johnhartstudios.com

Two men standing next to sign that says “SLOW, CHILDREN.” Man 1: “What do you think of the new sign?” Man 2: “What’s it for?” Man 1: “There’s a public school up ahead.” Man 2: “You’re one comma away from a social media firestorm.”

But it feels personal. When you have a loved one with special needs like my 9-year-old daughter, Mary, who has Down syndrome, jokes like this comic strip don’t have the same context anymore. “Slow children” street sign punctuation jokes are not worthy of laughs.

I don’t want you to find it not-funny out of pity. That makes it more painful. I want you to stop laughing at these jokes and stop making these jokes because of your compassion. Compassion for what we go through as parents. Compassion for how hard our children have to work to do things that come naturally to others. Compassion for the long list of medical issues that can accompany cognitive challenges.

I am not perfect. Before having my daughter, I remember being the kind of jerk who would make the lazy, mindless joke involving the r-word or some insensitive short bus joke. Thank goodness for my daughter. She taught me compassion.

There was a moment just last month when I was upset and Mary marched right up to me and held me. She whispered in my ear while she rubbed my back, “It’s OK, Mommy. It’s OK.” She will likely never be a mother herself, but her instinct to care for others is a model we should all strive for. I need to be the best mother for her, therefore I am constantly asking myself how I can be better.

As the saying goes, once we know better, we do better; that’s been my mantra since Mary’s birth.

This brings me to the crux of this piece: Why is this cartoon not funny? Why are jokes poking fun of people with intellectual disabilities not funny? How can my experiences help you to know better?

When you use individuals with special needs as the punchline to your joke, even if you “don’t mean it like that,” it still hurts. Essentially you are reducing our story — our struggles, our daily advocacy, our milestones — to an ignorant zinger. And I say “our” because it’s not just about my daughter being minimized by these jokes; it’s offensive to the parents of these children, too!

Being a parent is already a full-time commitment. Being a parent of a child with special needs is a full-time job on a mission. When I add hours of weekly speech therapy so kids don’t make fun of the way my daughter talks, or spend thousands of dollars and endless hours on cardiology appointments, ENT evaluations, sleep studies, eye exams and multiple surgeries, it becomes our story.

So I ask you, as Mary’s mom, as someone who used to think it was harmless: Step back and see that jokes do have consequences. Next time you want to tell a friend they should be riding a short bus, please consider families like ours and those we’ve met through our journey with Mary. Stop and consider “slow children” in the perspective of Mary spending years in occupational therapy learning how to write her name. Stop and consider that “riding the short bus” is a reality for so many families whose children are in wheelchairs or have complicated medical conditions. Consider having to use alternative transportation because your child has a full-time nurse ready to suck excess fluids out of his or her trach at a moment’s notice — is riding the short bus funny anymore when you think of it that way?

Believe it or not, I can have a good laugh, too. But this comic strip reiterated for me that over and over we’re treated as if we’re the ones with the problem, as if it’s my fault I didn’t get the joke.

There are still times that the reality of Mary’s challenges take my breath away, but there are so many more moments where I burst with pride that she is mine. She is the light of my life, my heart. She inspires me, and that is no joke.

Jana and her daughter dressed up as Miss Hannigan and Annie from “Annie.”
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23 Messages of Hope for Those Starting Their Mental Illness Recovery Journey

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The word “recovery” can mean many things when you live with a mental illness, and each person’s recovery journey is unique. Maybe it starts with a diagnosis or with those first steps into therapy. Maybe it involves learning coping skills, medication changes, missteps and challenging old habits. Maybe it’s a lifelong process, or maybe it takes merely a few months.

Whatever it is, it’s your own journey to manage your illness, and although it might seem daunting, it’s a journey worth starting.

In honor of National Recovery Month, we asked our readers to send messages of hope to those who’ve just started their recovery journey.

Here’s what they had to say:

1. “There is hope, but you do have to work for it.” — Emily Wright

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2. “For me, I had to realize it’s not in my control when the shades go down. But I do have control over what I do next. You have to realize you’re strong.” — Kirstie Loudermilk

3. “There’s no right or wrong way to manage your mental illness. You are not less of a person for needing medication or having to go to therapy multiple times a week. If something helps your mental health, take the time to do it. Don’t stop, no matter what other people think.” — Hayley Lyvers

4.It won’t be easy, but it will get better.” — Stacey Hogg 

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5. “Things can get better when you say, ‘I need help.’ You will continue to recover every day when you accept the right help and keep believing in it.” — Charlene Dewbre

6. “Recovery is a series of steps. The first step is forward — away from feeling hopeless. Then more steps to treatment, self-forgiveness, self-care and before you know it, you’ll look back and realize you’re on your way! One step at a time.” — Katy Keenhold

7. “The point of recovery isn’t to live without ups and downs — it’s learning how to live with the ups and downs.” Ali Foley Shenk

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8. “I found my recovery was a lot like being in the dark woods. I felt lost, alone and isolated. I stumbled and tripped over roots and branches. Some days I sat on a log and didn’t feel like moving at all. But I found a way to get up and take a few steps. A few steps led to more and more. Then I found a bridge and crossed over to light.” — Amy Beth

9. “Mental illness is a roller coaster of emotions. Some days there are more downs than ups. Take each day, or even each hour, as it comes. One day you’ll realize you’ve gone several hours without a down moment. That might turn into a whole day or even several days. When you get to that point, try to think about what you did differently to make the roller coaster ride a little smoother.” — Lexie Nooyen

10. “Be proud of every step you take towards stability, no matter how big or small!” — Jessica Ann Hardy

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11. “Recovery is a lifelong process. There might be times you feel like you’re hitting a brick wall. But keep pushing through. When you do push through to the other side, you’ll come out stronger and better prepared.” — Sandra Martorano Tentler 

12. “I don’t think ‘recovery’ is the right word. But what I would say is: it is possible to feel better. It’s worth it to get yourself well. It’s hard work, but it can be done.” — Cheryl Joyce

13. “Just wake up and take it one day at a time. Literally determine what you can do that day and focus on that.” — Chelsea Fleming

14. “You will not always feel this way. It’s hard to make yourself believe that when you’re drowning in the moment, but it can get better.” — Rebecca Bowen Roper

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15. “Don’t get hung up on the concept of recovery.” — Sonia Weaver

16. “It’s like living in the ocean — some days you get pulled by the tide, some days you swim against the current. The highs and lows will ebb and flow like the tide. But remember the ocean can be a beautiful place to be. Enjoy the moments when you can float on your back, stare at the sky and know everything will be all right.” — Sheilah O’Grady-Krajniak

17. “You will fall on occasion, and it’s OK. Get back up and keep going. You can do it. I have faith in you.” Carla Gibbs-Dempsey

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18. “You’re not expected to go through life on your own, and you’re not expected to always know what you need. Just saying you need something is equally valid. No one expects you to have all the answers.” — Charlotte Sanz-Henry

19. “The difficult times are just as valuable as the good times, because they give you the hindsight needed to help you go forward.” — Sara Cahill Camps

20. “Don’t be ashamed to admit you are vulnerable. Recognize you’re taking the first steps to save your own life.” — Carole Anne Trisler

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21. “Setbacks aren’t permanent; don’t let then get you stuck. Use them as an opportunity to add something new to your regiment.” — Judith Ann Simons Gorsky

22. “It’s worthwhile to keep rebuilding your life, no matter how many times it falls apart.”Christine L Hauck

23.Progress, not perfection.” — Lauren Adam Potthoff 

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*Some answers have been edited and shortened for clarity and brevity.

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Why I Won’t Stop Talking About My Son’s Dystonia

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Yes, I am that mom. The mom who fills up your newsfeed with those annoying posts and is always talking about that word you’ve never heard of before: dystonia. When you first heard it, you probably thought it was a country, which caused you to wonder why I’d be raising awareness for such a thing. And then while glancing at one of my posts or listening to something I said, you realized dystonia is not a country. It’s a disorder my son, Andrew, has been diagnosed with. You probably thought to yourself, He looks pretty normal. He must have been misdiagnosed.

If you take the time to watch Andrew, you’ll notice he moves differently than other children. He is stiff and wobbly. His knees don’t seem to want to bend when they’re supposed to and other times they bend when they shouldn‘t, causing him to stumble or fall. His arms twist in toward his chest or in a contorted motion out to the side. The more Andrew moves or the faster he moves, the worse those strange movements are. Even when he’s sitting in one place and playing with toys, you can still see these strange movements. That’s dystonia.

According to the Dystonia Medical Research Foundation: Dystonia is [a movement disorder] characterized by persistent or intermittent muscle contractions causing abnormal, often repetitive, movements, postures, or both. The movements are usually patterned and twisting, and may resemble a tremor. Dystonia is often initiated or worsened by voluntary movements, and symptoms may ‘overflow’ into adjacent muscles.”

We knew as soon as Andrew became mobile that he didn’t move like other kids. He was delayed in reaching milestones. He was wobbly and fell down a lot. His hands moved in strange ways sometimes and his arms would twist in toward his chest or out to the sides as he ran. We began to ask different doctors about Andrew’s movements and often got the same response: “He will grow out of it.” But Andrew’s abnormal movements became more prevalent to us when Andrew’s little sister, Maliyah, arrived. As Maliyah grew and became mobile, we noticed that she was starting to move with more grace and ease than Andrew. He began having a hard time keeping up with her.

Approximately one year went by. One night we went to Wal-Mart, and as we were leaving, we noticed he suddenly developed a significant limp. It took just a few minutes for us to drive to the restaurant for dinner. As we were walking from the car in to the restaurant, we noticed his limp was even worse. We couldn‘t think of anything that would’ve caused that. By the time we got home, he wasn’t bearing weight on his right leg at all and had started to complain of pain. We went to the emergency room, but the doctors there couldn’t find anything wrong with him, so they scheduled us an orthopedics appointment. At the orthopedics appointment, we were told Andrew probably had a toddler’s fracture that was so small it wasn’t even visible on x-ray. We told the doctor of our concerns with Andrew’s walking and other movements, and they said the same thing: “He will grown out of it.”

Another year went by. Our concerns with Andrew’s movement grew as he grew. We told various doctors about Andrew’s strange movements. The doctors often agreed, saying they noticed he didn’t move quite the way he should for a child his age but were unsure what to do about it. We were referred back to orthopedics once again. That doctor again assured us that there was nothing wrong with his bones, and therefore there was nothing she could do for him. We begged the doctor to watch him try to run in the hallway and she agreed. As the doctor watched Andrew run, he wobbled and was unsteady. His arms alternated the usual twisting motions we were familiar with. She said, “Yes, I see what you’re talking about. I think I’m on to something.”

She examined him further and told us we’d been referred to the wrong clinic; we needed to go to neurology. She thought he might have cerebral palsy, but during Andrew’s neurology appointment, the neurologist said that word we weren’t familiar with: dystonia. In the weeks to come, Andrew had blood work, a brain MRI and a lumbar puncture, all of which came back normal. The diagnosis of cerebral palsy was ruled out and Andrew was given the official diagnosis of idiopathic generalized dystonia. We were devastated to find that Andrew did have dystonia; it affected his whole body, and the doctors didn’t know why or how to fix it.

Andrew has good days and bad days. Some days you hardly notice anything different about him, and others he struggles to walk and complains of a lot of pain.

So yes, I am that mom. The mom that fills up your news feed with those annoying posts and is always talking about that word you’ve never heard of before. Dystonia. And I will continue to be that mom and raise awareness until a cure is found and my son, along with all others living with dystonia, can have the freedom to move. I’m a mommy on a mission.

September is Dystonia Awareness Month. To learn more about this neurological movement disorder, contact the Dystonia Medical Research Foundation. To sign the White House petition to have September formally recognized as Dystonia Awareness month, click here.

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