Each day provides an opportunity to learn more about my inner self, about relationships and about life. Many of these lessons were learned when my youngest son, who has autism, was very little. His needs during the time could certainly be described as special. I love and respect my son and I want to do whatever I can to support him and help him to thrive. That’s when I slowly began to develop some guiding principles I still try to turn to whenever I find myself in difficult situations.

I may have learned these things, but it doesn’t mean I’ve mastered them. I’m still a work in progress. Here’s my list of things so far that parenting a child with special needs has taught me about life in general:

1. Beauty can be found in unexpected places.

This first one may sound trite, but it’s an essential truth I cling to. Life can present us with struggles, yet it’s in the midst of darkness we truly appreciate the light. During our journey, I’ve learned about strength, love, perseverance and forgiveness. I’ve also met some amazing people along the way.

2. Embrace what makes life unique.

The world is full of opportunities for adventure. It’s also populated by a gloriously diverse people who have a lot to teach us and deserve our respect and acceptance. Different is awesome and can provide a refreshing new perspective on things. In my house we call it “not boring.”

3. Parenting can be hard sometimes.

Special needs or not, it can be exhausting to have another human being be dependent on you for all their needs. That doesn’t mean our children are a burden, because we love them. However, full schedules, perpetual problem-solving and things like constant medical concerns can make us weary.

4. Ask for what you need.

The people in our life don’t always know how best to help us. They may also assume we don’t need anything if we don’t ask so speak up. Sometimes, we require assistance to get through things. It’s not selfish or weak to ask for help.

5. There will be periods in our life where it feels like we take more than we give.

This can be especially hard for caregivers to accept. Remember our worth isn’t defined solely by what we do for others. There will be other times in your life when you’ll be in a position to help someone else who is in need. The scales are never balanced.

6. You’re stronger than you think.

“I don’t know how you do it,” I have heard people say. We just do what we have to. I think we often underestimate our own abilities and don’t realize how strong we are until given an opportunity to flex our muscles. I’m immensely impressed by the strength and resilience displayed by my son after witnessing some of the obstacles he has had to overcome. The power of the human spirit never ceases to amaze me, and adversity can teach us and help us to grow. But it’s important to remember this next one …

7. Self-care is essential.

Exercise. Try and get enough sleep. Eat healthy. Find what helps you relieve stress and then somehow find time to do it. Clear the schedule. Unplug. And for goodness sake, pamper yourself once in a while. You deserve it! You need it!

8. Be honest about your struggles.

Allow yourself to feel even the negative emotions and talk about them. Those feelings are there to guide and teach us, and it can be damaging if you simply push them back down inside. Find people who are safe sounding boards and vent away.

9. Keep moving forward.

Let it out, but then let it go. Try not to get stuck in a negative place because it can warp your view of your situation.

10. Count your blessings.

Every day. When you constantly focus on what you don’t have, you can lose sight of what you do have. Instead, try to be positive. Gratitude will help carry you through.

11. There is danger in comparison.

Don’t look at your life through the lens of someone else’s. Their life isn’t better or worse, it’s just different. Besides, you don’t know what struggles they face behind closed doors. The soccer mom with designer clothes and seemingly perfect children may have had a really horrible, difficult day and just hides it really well.

12. Don’t begrudge someone else their difficulties because yours may be different or seem worse.

This isn’t a competition to see who endures the most pain. Everyone struggles in life. Be sensitive to one another.

13. Appearances aren’t always what they seem.

Give people the benefit of the doubt. Try not to make assumptions without knowing the whole story. That meltdown from a screaming child in the grocery store may be the result of sensory overload and not a “bratty kid and bad parenting.” If you can’t say something helpful, then it’s best to keep your opinions to yourself. Keep your mouth shut and don’t judge. If someone else says something you find hurtful, don’t be quick to take offense. Instead, try to discern their heart and intentions.

14. Remember everyone responds differently to stress.

Unexpected experiences can make some people more compassionate, but it can make others appear hard. As you go through life, you may find you switch back and forth between these responses.

15. Don’t be afraid to say no.

Establish boundaries and save your energy for events and activities that will have a positive effect on you or your family. If something would be too difficult, then decline the invitation. Don’t set your yourself up to fail by getting into a situation you know would be problematic or overly stressful. The well-being of your family is your first priority, and those who really care about you will understand that.

16. Cut out the negative people and add in the positive.

If a person is draining your emotional energy or doesn’t “get” you or your child, it’s OK to invest less time in them. Find a community of people who will encourage and care for your family. It’s also helpful to get input from multiple informed sources and experts. Build a team of individuals who you trust.

17. You are your child’s best advocate.

Trust your instincts. Don’t be afraid to fight for accommodation in the schools or ask a doctor for a second opinion. I know many parents who have circumvented problems by being persistent and questioning the experts.

18. Love and accept people for who they are, rather than who you expect them to be.

That includes acceptance of any sort of medical diagnosis your child may receive, but don’t allow the diagnosis to limit anyone’s hopes for them. If you are a parent, remember your child’s journey is their own unique adventure.

19. Celebrate every new milestone and accomplishment.

Be sure to tell your child how proud you are of them. Take time to rejoice in their growth and achievements, no matter how small they may seem to outsiders. Celebrate your own victories, too!

And finally,

20. Be kind.

Enough said.

A version of this post originally appeared on Seriously Not Boring. You can also find Jennifer Bittner at her Seriously Not Boring Facebook page.

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This post may potentially bristle some feathers, but please know that none of what I’m about to say is meant to degrade anyone. There are a few things I’ve observed while meeting other parents and finding out about all the services available to special needs children. Here’s my list of five things I think we all need to remember:

1. No one wins the competition of who has the sickest child.

It’s tough when I see parents discussing how much worse their experience is than others and diminishing your child’s situation because they feel their child has it worse off. Here’s the truth: Having a life-threatening illness or developmental delay can be hard. Parenting a child who has a life-threatening illness or developmental delay can be hard. No one wins this competition. In fact, it’s not a competition. It’s a reality we have to deal with. We all have things we go through, and we just need to exercise empathy and sympathy for those going through challenging times.

2. Criticizing providers can be unproductive if it’s not constructive.

I’ve noticed how some parents who are the most unhappy with their child’s experience at a specific hospital or clinic tend to be the loudest when criticizing providers. I admit I got pretty loud initially when Von wasn’t getting the care he needed from a pediatric group. But in time, I realized my emotions were fueled by my desire to keep him safe, and I knew we weren’t a good fit for that hospital.

Calling out a doctor, care system or nurse on a Facebook page or forum can be unproductive if your criticism isn’t constructive. Plus, delete doesn’t always make your rants go away. So choose your words carefully.

3. Celebrate the things your child can do instead of what you know they can’t do.

This is something I’m also guilty of, but I’ve been making a point of really changing my whole outlook about what Von can do and what he is good at. Our kids are dealing with things other kids never will. They take meds, attend therapy and work hard for every single milestone. Remember the achievements they have made and celebrate them. High-five, fist-bump, have a beer or do whatever makes you happy to celebrate. Find a way to live in the positive.

4. Take a break and make sure you take care of yourself.

All too often I see parents running ragged. I see moms who are not sleeping, eating poorly and not finding time to really take care of themselves. Our children need us to be physically, mentally, emotionally and spiritually healthy. Find time every day to do one thing for yourself, even if it’s with your child. Take your kid for a run in the stroller, take a bath, read a book, pray, zone out or simply just sit in peace. Your child needs you at your best. Don’t forget to take care of yourself.

5. Don’t be afraid to ask for help. It’s hard to do this on our own.

Many of us are working full time, managing numerous doctors and therapists, countless appointments, medication schedules and refills and development. It’s not possible to do it all on your own. It’s OK to ask for assistance. No one expects us to be supermom. I’ve been so guilty of this and have had to really let go and start allowing other people to watch Von. I’ve had to go outside of my comfort zone to do it, and I hated having to do it. But I know it’s for his best interest and mine. I can’t be everything to Von all the time and still be good to me.

Katie Paulson the mighty

A version of this post originally appeared on Von’s Super Hero Facebook page.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? 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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When you’re the parent of a child with a chronic illness, social media is both a blessing and a curse. It’s a blessing because I can connect with parents who really understand, who have encouraged me during the toughest part of my life and who know all the fancy medical jargon I use. They are there for you 24/7. I can snap a picture of my daughter’s latest injection site that looks angry and swollen, post it on the forum and ask people’s opinions from the comfort of my own home. Even if its 2:00 a.m., long after her doctors are in bed, I know someone will answer.

It’s a curse because I’m also able to witness the lives of the children who are struggling with the disease far worse than my daughter has ever experienced. It feels like survivor’s guilt, like we dodged a hail of gunfire in an open field. While I don’t want to pity them (because that’s not what I would want if it were me), I can’t help it. I have so many emotions when I read their updates: fear, relief and, most of all, guilt.

My daughter has been in non-medicated remission from systemic juvenile idiopathic arthritis, an autoinflammatory disease that causes chronic pain, for over a year now. It’s been three years since she’s experienced any pain, actually, and two years since her last dose of medication. I’m at a place in my life where I want to shout from the rooftops that my daughter is cured. I want to run through the streets and tell everyone how proud and lucky I am to be the mama of such a resilient little girl, but I just can’t shake the guilt. I know my fellow moms and dads would tell me never to apologize for celebrating her health; I just wish and pray the same for their children.

When I see her chubby little legs dancing and spinning around, it takes my breath away and my heart beams. I marvel at her health on a daily basis. I wish every other parent who’s experienced this disease could look at their child and feel the same warmth in their heart, watching their child living pain-free. It makes me wonder why my Mia is so lucky? She is absolutely no more deserving than any of them. The treatment plan we were on is standard — we have done nothing differently. Why does this disease pick and choose which child it’s going to relentlessly pursue and which it will loosen its grip on?

At the same time, hearing their stories keeps me grounded. It reminds me there is no cure.

As much as I would like to believe every day that goes by with no symptoms proves she is cured, it’s sadly not the case. Tomorrow, we could wake up with swollen joints and fever, my daughter unable to walk and in pain again. All without warning. So for today, I live in the moment and I celebrate.

I celebrate when she takes off running through the store, because that means she’s well enough to run.

I celebrate her crazy 4-year-old diva tantrums, because that means she has the energy to fight.

I celebrate when she finds the marshmallows and finishes the bag before my alarm even goes off, because that means she has an appetite. I celebrate when she tracks mud all through the house, because that means she’s well enough to play.

So maybe having a little guilt hanging around as a reminder to celebrate all these small things that parents of “normal” kids sometimes take for granted isn’t such a bad thing after all.

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This is the story of parenting lessons learned during a long, grueling, exhausting and exasperating day. On this day, we were up and out of the house early and on our way to the doctor for both kids to undergo allergy testing. Not only did this mean they’d both receive numerous needle pokes and having blood drawn, but it meant we’d be in the car for five-plus hours for the trip there and back. (Yes, we live in the middle of nowhere. It might not even be on the map.) A rough day for anyone, made doubly so by my children’s special needs. 

Our daughter has SPD, or sensory processing disorder. Our son has high-functioning autism or Asperger’s syndrome, as well as obsessive-compulsive disorder and severe anxiety. Anything that throws off our routine is the devil to us; needles and long car rides send us spiraling into oblivion. 

So I could tell you the whole story of how the day went, but that would take an inordinate amount of time, which none of us have. Instead, I will relay the highlights/lowlights of the day in the form of this countdown. I call it “Top Five Things Parents Should Do When They Don’t Know What to Do.” Enjoy.

5. Deep Breathing  

If you don’t know how or what this means, I advise you to invest in a yoga DVD or check out a deep breathing technique video on YouTube. Real life example of the merits of this technique: My daughter who has SPD despises car seat buckles. Every time we got into the car yesterday (a total of three or four times), I was forced to buckle a shrieking, kicking, stiff-as-a-board, spitting, purple-in-the-face toddler into her car seat. She spilled our drink from lunch. She threw sour candy all over my husband’s immaculate car. Did I mention how immaculate my husband’s car was?

Cue deep breathing. It took some long, deep breaths to calm myself enough to get her back into that seat. No amount of reasoning was to be had. I tried every trick in my book (as well as several pages borrowed from other mothers and our therapists) to convince her. In the end, it came down to my upper body strength and some long inhales through the nose. We both lived and rode all five-plus hours safely buckled into our seats.

4. Calm Yourself First  

If you’ve ever flown with a small child, the flight attendants tell you to put on your oxygen mask before you put one on your child. It goes against parental nature, but the logic is, you can’t help your child if you die from lack of oxygen in the attempt. Same reasoning applies here. If you’re freaking out, chances are, so will your kid. Calm yourself before you attempt to calm your child. No amount of “calming” words or gestures given by an adult on the edge of a breakdown/meltdown are going to help a child on the edge of the same. 

Learn by this example of what not to do: After the initial round of needle pokes, the doctor decided my son (the hypersensitive, sensory-avoiding one) would need additional inter-dermal allergy testing. That meant more needles and bigger needles. When the nurse came in with a tray loaded with eight large syringes, I literally gasped out loud. Bad idea. My son heard that gasp loud and clear and nothing I could say or do was going to make him forget it. Ever heard the term “autistic meltdown?” Insert one here. It took two of us to hold him down so they could finish. 

To top that off, they had to re-test one more time for an allergen he was especially allergic to. I was out of the room with my daughter for this one. My son didn’t flinch this time.  He calmly sat in his aunt’s lap and let the nurse insert the needle under his skin without ever making a noise. (Did I mention I brought an entourage to this appointment to help if needed? I did.) Moral of the story: Keep Calm and Parent On. Literally.

3. Take Cues From Your Kids  

There are times when the best choice is to just follow the lead set by your child. Example: Our SPD daughter is a sensory seeker with marked under-responsiveness to pain (among many other avoiding/seeking/modulation/regulation issues). When having her blood drawn, the nurse asked me to hold her in my lap to keep her still. My daughter refused. Instead, she sat very still in the chair (alone) while I helped hold her arm straight with one hand. She looked on with mild interest while the nurse took an IV needle and vial to take blood out of her tiny arm. The nurse was shocked she sat so still and quietly. Had I forced her to get into my lap, I absolutely guarantee a meltdown would’ve ensued. In her short three years, she’s developed incredible coping skills. Had I tried to wrestle her into my lap, the full-body contact would have made it impossible for her to center herself and cope with the experience. Instead, all I had to was follow her lead.     

2. Surround Yourself With Support

I brought my mom and sister with me yesterday to the appointment. Not just for the kids’ sake, but for my own. We were able to have a nice lunch and enjoy at least part of the day because of their company. When we finally made it home in the evening, my husband was able to help get the kids bathed and settled down for the night, as well as helping unpack the lunch, snacks, and other items that had accumulated in his car (his poor, formerly immaculate car) throughout the day. After dinner, I had a chat with someone whom I consider my closest friend.  We don’t get together nearly as much as we’d like, but this girl is there for me. We have only a couple of “friendship” rules that we both abide by. The first: no judgment; only support. The second: silliness. Always silliness. Which brings me to my next rule…

1. Laugh 

Laugh hard. Laugh loudly. Laugh often. I have a feeling many people I know think I might not take this whole parenting gig as seriously as I should. There is no other heaviness or seriousness to compare with the thought of being in charge of another human being. Not only in a physical capacity, but also being co-head supervisor of their cognitive, social, emotional and spiritual well-being. It’s the most terrifying responsibility you will ever imagine. Serious? Absolutely. Hilarious? Even more so. 

Real life examples: My son was having a huge, major panic attack about those needles. He was melting down and continued to do so even after they were finished and out of the room until my mom had the presence of mind to crack a joke about the pet store having dog underwear. He laughed, and just like that, the world righted itself and the panic was gone.

My beautiful soul of a daughter decided in the car on the way home that her day had, in fact, been too much to handle and she needed a major sensory outlet. Now. Her solution was to take the plastic storage container that had strawberries in it, pull the lid off and proceed to squish every single strawberry into pulp. By the time I glanced in the rearview mirror, there was nothing to be seen but pink paste dripping from my daughter’s clenched hands. I reached for the wet wipes, while realizing I had none. I dug in my bag with one hand while navigating traffic with another (no time to pull over, that pink pulp about to start to flying) and found… an extra pair of my son’s underwear. At this point, my sensory-seeking baby girl was about to get upset because while she loves the initial sensation of mess-making, she also loathes being dirty. Before the screams started in full-force, I executed a one-handed, behind-the-back swipe of her arms and hands, while simultaneously whisking the “mess” in the container away unnoticed and substituting an orally regulating bag of crunchy chips. 

Go ahead: Laugh. It was freaking hilarious. It was ridiculous. It was totally necessary. But if I hadn’t started giggling when I saw that strawberry covered fist in the air, I would’ve lost my mind. The day was pressing down hard and my patience and mental state were flagging. That giggle saved our lives. Because when they heard me, the kids started to giggle, too. And then, well… we drove on into the sunset. 

A version of this post originally appeared on Where’s Mommy’s Coffee?

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About a year ago, as we were in the throes of begging a Dallas psychiatric hospital to treat our 15-year-old son, a family member made some interesting comments. In a conversation that took place on Facebook, I was accused of spoiling my child, not parenting properly and, in my attempt to obtain treatment, relying on the government to take care of a responsibility that was ultimately my own. The words were harsh, judgmental and they stung. My feelings were deeply hurt.

I engaged in the conversation to defend myself and help my family member understand the entire situation. Unfortunately, I was met with more judgment and even greater hostility. In an attempt to salvage our now deeply fractured relationship, I left the conversation.

A year has passed since that hurtful event took place, and I’ve sincerely tried to move forward in a spirit of love and grace. I believe my family member simply doesn’t understand.

But a whole year later, I woke up to another upsetting comment from my relative. Although this time the words weren’t targeted directly at me, they were just as harsh and judgmental. The hostile nature of the post and the similarities to last year’s dialogue stirred some deep emotions within me.

As I’ve been licking my wounds and processing the situation, a revelation came to me: My relative’s lack of understanding, lack of empathy, lack of compassion and false perception of my family’s situation represents the way most of our nation views mental illness.

I am blessed to be surrounded by a community of people who are supportive, empathetic and who have stepped up and stepped in to walk this horrific journey with my family. As a result, I live in a bubble. I’m protected and therefore sheltered from the harsh critics in our society.

But the harsh critics exist, even in our own families.

Through my tears and in my attempt to understand my relative’s point of view, I found myself filled with a greater desire to bring awareness, provide more education and move our society forward. I’m actually thankful my family member attacked. His words served as a great reminder: People do not understand.

And how can they?

For all of history, society has done everything in its power to sweep the issue of mental illness under the rug. No one wants to be associated with mental illness. No one wants to admit mental illness exists. Certainly no one wants to have a mental illness in their family. No one wants to be mentally ill. Nobody wants to be “crazy.”

But I refuse to walk in shame.

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Before you judge my son and our journey of treatment, know this: 

My son has a physical illness that affects his brain. He has severe bipolar disorder, which can be extremely difficult to treat. This illness is as real as another person’s heart disease, diabetes or cancer. This illness is not a result of bad parenting, too many video games, being spoiled or lack of faith. This illness is biological. It requires medication and intensive treatment. If left untreated, Cody will get sicker, will likely end up in jail or on the street and his life expectancy could decrease by up to 20 years.

My family is not alone. One in four people worldwide have some form of mental illness. Five percent of Americans have a “serious mental illness,” such as schizophrenia, severe bipolar disorder or severe depression.

Are families looking for a government handout? No. Insurance companies do not cover mental health the same way they cover medical health. In our experience, insurance companies are only willing to cover up to 30 days of inpatient treatment. For a person with a severe and persistent mental illness, like my son’s, 30 days is the equivalent of putting a Band-Aid on stage IV cancer.

No other illness is treated this way.

We’re receiving treatment through our school district. Yes, the school district. Not from insurance and not from any other medical coverage. This is the way our current system is set up. It’s our only means to receive quality care. We have fought for this treatment. The cost for intensive residential treatment that our son’s illness requires is in excess of $8,000 per month. That does not include medications. I don’t know of any family who can afford these kinds of medical expenses out of pocket. It’s not our desire to receive financial assistance, but under our current system of care, we are left with no other options. We are thankful to be receiving help. There are many families who are not so fortunate.

It’s my deepest desire to bring mental illness out of the darkness and into the light. We’ve got to change the way our society views mental illness. We must eliminate the myths and focus on the facts. I long for the day when people who have mental illnesses will be added to church prayer lists instead of being criticized and condemned. I long for the day we will be less critical of one another and more understanding, empathetic and compassionate.

Wouldn’t we be better off trying on the other person’s shoes before offering judgment? Wouldn’t it be smarter to learn the facts before we offer criticism?

I do hope you will not post anything harsh or unkind about my relative. I didn’t write this to invite any more hostility. Instead, I invite you to share anything new you have learned from this information.

How has this helped you be more empathetic and understanding of mental illness?

What can you do to bring change?

If you’re in a family that’s affected by mental illness, how can this help you educate others? Can you find the courage to share your story?

Please post your positive comments. I would love to hear from you!

A version of this post originally appeared on Bold Faith Ministries

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I don’t want to eat this apple.

As I rinse the Gala apple I am disappointed. It’s surface is a dull red interrupted by an uneven patch of yellow. It’s lopsided and marred by bruises. It simply can’t compare to the shiny green luster of a Granny Smith.

I twist out the stem and bring the small, unwanted apple to my nose. I close my eyes and inhale.

I’m trying to trick my brain into appreciating this piece of fruit. Instead, the unremarkable scent has me imagining a bite of the absent Granny Smith. My teeth would break the skin, releasing tart juices onto my tongue. The crunch of each  subsequent bite would echo in my head. I would nibble off crispy white morsels until I reached the core. I would feel righteous eating such an apple, knowing how much healthier it is for me than a processed snack food.

Instead, I am feeling like a martyr. Sure, Gala apples were on sale at the grocery store, so I saved a few cents opting for this kind over the Granny Smith.  The two varieties were displayed side by side in the produce section. I was reaching for the luscious green apples when I was forced to buy the boring Galas.

It’s my son’s fault. You know, my autistic son who supposedly cannot pretend. “Lack of symbolic play skills” was one of the criteria for his diagnosis. It was one of the many things the specialists told us my son couldn’t do.

He was my shopping companion last Wednesday. He stood beside me as I scanned the Granny Smiths looking for apples without blemishes, the ones with the loveliest green curves.

I was reaching for the perfect specimen when Philip grabbed a Gala apple from the adjacent bin. He put it to his mouth and pretended to take a bite.

I had to buy this apple since Philip’s lips touched it. I put it in a bag. While my hands were occupied with this task, he grabbed a second apple and, complete with chomping sound effects, pretended to eat it. I was forced to purchase that one, too.

That’s why I’m washing an apple I never wanted. That’s why I’m taking a bite.

And it’s the sweetest tasting fruit I have ever eaten.

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A version of this post originally appeared That Cynking Feeling

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