Positively Engaging with Parents of Children who are “different”

Hello! Glad you’re here!

If you haven’t heard, I am the proud mama of my little man, Ezra. He is everything to me. My sun, moon, and all the stars.

He’s is 8 months old, sitting up on his own, loves to grab Mommy’s hair and Daddy’s glasses, and giggles while he is “dancing” or “flying.” Peas are his favorite food and he hates naps. He refuses to crawl, and prefers to roll everywhere he wants to go. He is fascinated by our cat and is obsessed with our dog.

He also has a condition called metopic craniosynostosis. Simply put, his forehead skull bones fused too early causing him to have a ridge on his forehead and a head that’s shaped like a triangle.

Now normally, you can’t really tell anything is different. Many people don’t notice his head at first, if at all. The craniosynistosis doesn’t affect his every day life in the slightest and mostly doesn’t affect my partner and my life on a daily basis. Of course we still worry, what parent wouldn’t? But we try to live as normally as possible.

I was inspired to write this post after a seemingly insignificant exchange between myself and a nurse. I was originally going to address this post to that nurse, but after thinking about it, I decided to open the discussion to everyone who will ever encounter a child who is different.

The backstory

About a month ago, my little guy was really sick, had a fever of 104.6. I hurriedly gave him some ibuprofen and rushed him to the Emergency Department of the children’s hospital were he receives all of his specialized care, thinking it would be easier because they have all his records.

We were taken back immediately because a 7 month old with that high of a fever is a top priority. The first nurse was very sweet and nice, asking all the perfunctory questions medical facilities do and oooing and awwing about how cute Ezra is.

Which is why I absolutely know she didn’t mean anything by her comment. She saw Ezra’s forehead, ran a finger down it and asked, “is it always like that?”

I nodded and explained, “yes, he has craniosynostosis.”

The nurse nodded and responded “Oh, well he looks really good, most kids with that look much worse.”

Her comment was said so off-hand that I don’t even know if she or my partner really paid much attention to it. And the nurse was not necessarily wrong. My baby DOES look pretty good.

But how good he looks doesn’t change the fact that my beautiful, perfect baby boy is going to need major surgery before he is year old to correct his head. It doesn’t change the fact that he may have a learning delay or issues with migraines because of his condition later in life. It doesn’t change the hours and days I’ve spent worrying, crying, and thinking why my baby?

The nurse probably meant to be reassuring, but to me it felt dismissive. As though my baby looks so good his condition isn’t that big of a deal. But craniosynistosis is a big deal.

My advice to everyone who may ever come across a child who is in any way different

Now that I’m a mother to a child who is different, I have a newly found perspective on ways to reassure people and especially parents. My advice is, please, please do not down play their difference, don’t try to find the “silver lining.” If the sentence starts with “well at least it’s not/is” don’t say it. I can’t tell you how many times someone has said to me “well at least it’s treatable” or “at least it’s not cancer.”

Yep. You’re right, at least it’s not worse. I feel so incredibly grateful my baby’s condition is fixable. And I thank my lucky stars it’s not cancer or something else. But, as a parent to a child who will be having a huge surgery, that is not the type of encouragement or reassurance I need.

I know I’ve been guilty of saying similar things to people over the years. And I promise I know people don’t mean to hurt my feelings or be dismissive about my experience and my son’s future experience. I am offering you an alternative view now that I have this unique insight I didn’t have before Ezra was born.

Instead, do this!

Offer words of encouragement. Something like “thank goodness you caught it early.” Or “I’m so glad he’s doing well,” and “I will be thinking/praying/hoping for his safe surgery and recovery.” “He’s really strong, he will be ok.” Or heck you can even say “I’m so sorry you and you’re family are going through this.”

You can also ask me questions about his condition. I am happy to educate people, because in my experience, no one knows what craniosynistosis is. Asking things like “what does the surgery entail?” or “will he always have this condition?” are perfectly good questions.

I love positive encouragement and inquisitiveness. It’s uplifting and makes me feel like you care about his treatment and prognosis. My family and I need all the positivity people can give us and we will gladly take it.

If you’d like to read up on craniosynostosis check out this website or this one

If you want to donate or support a really awesome nonprofit for craniosynostosis click HERE

Thank you!

Let me know what you think! What are some ways you’d like to be reassured? Have you ever had an experience similar to this with yourself or your kid?

Mindfulness Walking

Mindful Monday’s

Hello! Welcome back to my second mindfulness post.

Anxiety and depression are the two most common mental health issues people experience. They can significantly impact the lives of people who have them.

I suffer from depression and have since I was a teenager. Unfortunately, mental illness is largely stigmatized. So I thought I’d share some of my own experience with depression. People will often tell me they had no idea I suffer from depression because I hide it so well. Perhaps this is part of your experience too.

What my depression looks like

I get into such low moods all I want to do is sit on my couch and zone out. I won’t clean, I’ll barely do laundry and dishes. Now I do what I have to for my son, but when it comes to my own stuff, it’s largely forgotten. I will binge on crappy foods and other times I’ll barely eat anything. Sleeping will become impossible even though I’m exhausted, or I will literally sleep all day. I become very negative and believe everything people say is a slight against me. Sometimes I will get angry with my loved ones for no reason and lash out.

I won’t always know it’s happening, it can be a slow, creeping process. The depression will slowly choke out the outside world until I’m left with only dark thoughts. Thoughts will circle continuously telling me how ugly I am, how fat I’ve gotten, how I will never be happy, that people don’t actually want to be my friend, they are just pretending. Why do I bother? No one will want me. I’m too abrasive, I’m not happy enough, I don’t understand jokes.

While my depression and negativity is happening, I’ll go through the motions. I put on my eyeliner, smile and laugh, joke with my coworkers, and maybe have good conversations with my friends and family. I’m exhausted from pretending all day and can’t keep it up at home. I will sit on my couch for hours with the TV on, sometimes I’ll watch it, but mainly it’s for background to try to block out my thoughts. To switch off, to shut down. But when I manage to shut down, the numbness can be worse. Can you be human if you are numb? There is a major difference these days to my depression though. Before I was pregnant, I hardly cried. Now crying is all too familiar.

My light of my life

The light I focus on in the fog is my son. My happy little man is my reason for being. His whole face lights up when he sees me. That is the most magnificent gift. He doesn’t know what depression is. My son doesn’t know Mommy struggles with depression. Ezra needs his mommy to be there and be engaged with him. I have been working very hard to recover from depression for my son.

Mindfulness

Mindfulness is a very good tool to use that can actually help with depression and anxiety. It can help you boost your mood, stop dwelling in the past or future, and encourage you to relax and experience this moment. If you want to read a little bit more on mindfulness, see my other post here

I love mindfulness and have found it to be extremely helpful and useful. Now, I’m not perfect, I definitely don’t practice mindfulness every day. But I try to practice several times a week. Currently, I do a mindfulness exercise as part of my bedtime routine. This is the easiest part of my day to set aside for mindfulness because it’s a time I reserve for me. You can do mindfulness pretty much by doing anything and pretty much anywhere.

If you’re super busy like me, perhaps an easier time for mindfulness is when you’re walking. Yes, walking. You’re going to be walking at some point during your day, right? So why not make it mindfulness walking!

Ready for another mindfulness exercise? Good! First though, some reminders!

Mindfulness is paying attention, on purpose, to the moment without judgment and emotional attachment. Losing focus is normal and perfectly OK! When your mind wonders to thoughts, worries, or anything else, gently bring your attention back to the exercise.

Mindful Walking Exercise

Start by walking at your typical pace without trying to change it. Notice how you are walking.

Notice the sensation of when your feet leave the ground. What does that feel like? Do you shift your weight? Do you lift at the foot? Or the knee or hip?

After several steps, shift your attention to the sensation of your feet hitting the ground. How does your weight shift when your foot lands? Do your toes or heel hit first? Notice your feet making contact with the ground for a few steps.

Slowly make your way up your body. How are your knees bending while walking? Are they moving easily or are they stiff? Allow yourself to simply notice your knees for a few paces.

Then, focus on your hips. What direction are they moving? Side to side or more straight? Can you feel your upper legs and hips connect at the joint? How does that feel? What is your experience with that sensation?

Move your attention then to your stomach. Are your stomach muscles moving? Do you hold your belly in? Can you feel your breath in your stomach? Just feel and notice your stomach muscles as you walk for several steps.

Switch your focus then to your arms and shoulders. Are your arms moving or crossed? Are your shoulders lose or hunched towards your ears? If your shoulders are upwards, make the point to lower your shoulders and uncross your arms, letting that tension release.

Then focus on your face and head. Where are you looking? Is your head downward looking at the ground? Upwards looking side to side? Do you move your head when you see something or hear something? Take the time to simply notice your head.

If you are still walking, start again, but speed up or slow down your pace. Are you less tense? More tense? Is walking easier or more difficult? How does your breath change when you speed up or slow down? Notice how the change in your pace changes your experience.

Practice makes perfect!

Practice mindfulness walking for a week and see how it impacts your life. Ask yourself if you notice you’re less stressed? Focusing less on past or future thinking?

Let me know what your experience is! I’d love to hear from you. If you like this exercise and want more, please follow my blog and sign up for my email list for exclusive Positively Kati Content!

Happiness…we all want it. Here’s how to boost it!

I have been interested in person positivity, well-being, and happiness for quite some time now. My first look into the idea of positivity and happiness was while I was in college and wrote a twelve and half page essay on happiness. In this essay, I collected a decent amount of research on the topic which revealed very interesting facts and possible ways to boost happiness.

First ask yourself what makes you happy? Or, what will make you happy? A lot of people might answer that if I had a new car, or if I lived somewhere else, or this new pair of shoes will make me happy. This makes sense right? Shiny new items, what’s better than that? Sorry, but you would be wrong. New items in your life do not actually make you happy! We adapt too quickly to our environment and surroundings for what is called our life “circumstances” to have lasting effects of happiness. Most of us have been there, when we get a new item or move it makes us happier for awhile, but then we get used to it. It stops being that shiny new item very quickly.

Now I am going to quote myself from the paper that I wrote a few years ago. Why? Because I can.

“Lyubomirsky et al, (2005) developed a model of happiness suggesting that circumstances only account for 10% of total well-being, 50% for the genetic set point, leaving 40% for what they called ‘intentional activity.'”

What this means, is a large majority of our potential happiness is genetically determined and tends to be the baseline our happiness will return to. There are people who are just genetically happier people and there are people who are simply genetically less happy. Only ten percent counts for our house, our car, our jobs, and the items we have. Yep, that’s it, a measly 10%. The other 40% is determined by WHAT WE DO! Now this is very important. Our own actions are what can boost our happiness, even our long term happiness! The only problem is finding out just exactly what actions can bring sustained happiness.

Curious to find out what that is? That “intentional activity?” I bet you are just dying to know! You’re in luck, because I’m going to tell you. Based on scientific studies conducted by Lyubomirsky, S., Sheldon, K. M., & Schkade, D. (2005), Sheldon, K. M., Boehm, J. K., & Lyumbomirsky, S. (in press), and Seligman, Rashid, & Parks (2006), actions like  counting blessings, setting relevant personal goals, performing acts of kindness, and writing letters of gratitude can elevate well-being and happiness for UP TO ONE YEAR! Isn’t that amazing?

To help even further, Sheldon, K. M., Boehm, J. K., & Lyumbomirsky, S. (in press), found that SWITCHING UP your routine can help battle that “headonic treadmill,” which is a fancy term for the fact that we as people become too used to activities too quickly. So, if you pick more than ONE happiness boosting activity and even switch that activity up from time to time, you can actually maintain the elevated levels of positivity and well-being for an extended period of time.

And let’s face it, everyone wants to be a little bit happier right? So I’m going to challenge you guys to pick at least ONE of these things to do, counting blessings, random acts of kindness, to do for one month and then report back to me. Let me know how you feel, if you feel it worked, if you think me and a bunch of scientists are all blowing smoke up your you-know-what.

Personally, I am going to pick random acts of kindness. This can be something as simple as, waiting to hold that door open for someone, letting someone cut in front of you in line, paying for the person behind you line at Starbucks, or whatever you can think of that would brighten someone else’s day. I will report back to you in about a month to let you guys know what I did and how I feel after my months challenge.

Curious about where I got my info?? Interested in reading the full study? Awesome. Listed below are the peer-reviewed published articles I referenced in this post.

REFERENCES:

 Lyubomirsky, S., Sheldon, K. M., & Schkade, D. (2005). Pursuing                            happiness: The architecture of sustainable change. Review of                      General Psychology, 9, 111-131.

Seligman, M. E. P., Rashid, T., & Parks, A. C. (2006). Positive                                        psychology. American Psychology, 61, 774-788.

Sheldon, K. M., Boehm, J. K., & Lyumbomirsky, S. (in press). Variety is               the spice of happiness:
The hedonic adaptation prevention (HAP) model. To appear in I.             Boniwell & S. David (Eds.), Oxford handbook of happiness. Oxford:             Oxford University Press.