Tuesday, November 1, 2022

10 Myths About Autism

This post contains referral links which means that if you purchase from one of my links, I will receive a small percentage of the sale.  Don't worry, this won't cost you any extra!

There are a lot of myths and wrong beliefs about autism. We've run into quite a few since Davy's diagnosis in 2021 at the age of 7. I actually first suspected he had autism when he was 3, but thanks to some of the common myths about autism, I had a hard time getting anyone to take my concerns seriously, including medical professionals. So, I thought it might be a good idea to address some of the most common myths. 


1. All autistic people are alike.
This is the same as saying that all people with blonde hair are alike. It's just not true at all and trying to put all autistic people in a box can be very hurtful to them. If you've met one person with autism, you've met one person with autism. Each one is a unique, amazing individual with different personalities, traits, and characteristics. 

2. Autistic people flap and rock.
Flapping and rocking fall under the category of stimming which is a repetitive behavior that people with autism often do to calm or regulate themselves. Stimming comes in many different shapes and forms though, not just flapping or rocking. Davy's favorite stim is what we call "book and pen." Ever since he was an infant, he has spent hours flipping pages in books and when he was a toddler he added the "pen" which can be any object that is shaped similar to a pen. "Book and pen" is where he sits (usually on the floor) with a book (the bigger the better) open on his lap, flipping through the pages one by one while flipping and fidgeting with the pen in his hands.  

3. You can grow out of autism.
Nope. Autism is a neurological and developmental disorder, which means that it's something that is hardwired into a person. A person can learn to manage its symptoms with therapies, but it's not something that can be outgrown. 


4. Autistic people can control their behavior.
When Davy is in the middle of a meltdown, he's out of control. There's no talking or disciplining him out of it. The best thing to do is be aware of his triggers and when he's getting overstimulated so I can try to stop the meltdown before it starts. 

5. Autistic people don't like being touched.
Some people with autism are hypersensitive to touch and don't like it, but others are hyposensitive and crave it. Davy is hyposensitive and he loves hugs and often crashes his body into furniture or the floor intentionally because he craves that sensory input. 

6. Autistic people don't have or want friends.
People with autism often have difficulties making or keeping friends, but that doesn't mean they don't want or need them! 


7. All autistic people are geniuses.
Okay, some are, but that doesn't mean they all are. Davy may not be a certified genius, but the way his brain works amazes me. About a tenth of all autistic people have savant abilities. 

8. People with autism don't have a sense of humor.
Some people with autism may not understand certain jokes, but that doesn't mean that they don't have a sense of humor. Davy has a very unique sense of humor that is different than most people's, but hilarious nonetheless.

9. People with autism don't have empathy or feelings.
Just because they express their feelings in different ways doesn't mean that people with autism don't have any or are not empathetic towards others. A friend of mine with autism explained to me that she feels emotions so intensely that they're overwhelming and she shuts down.

10. Autism is overdiagnosed or isn't really a real disorder.
Ever heard this one? "Kids in my day didn't have autism!" Actually, in your day, kids with more severe symptoms of autism were often institutionalized and weren't mainstreamed and kids with less severe symptoms went undiagnosed and misunderstood, often causing irreparable damage. It's very real and it often went undiagnosed in the past. Thank goodness things have changed! 

Which of those myths have you heard or did you believe at one time?




 

Tuesday, October 18, 2022

A Gut Feeling: Raising a Child with a Genetic Disorder

Have you ever had a gut feeling about something? A nagging thought in the back of your mind that just wouldn't go away?


I had that when I was expecting my third child. From the moment the second line appeared on the stick, I had a feeling that there was something unusual about the pregnancy, that there was a surprise waiting for me at the end of it. I didn't know what it was though. Maybe twins? No other possibilities came to mind and when I had my first ultrasound at 20 weeks, there was definitely only one baby. A little boy. The ultrasound technician printed a fuzzy black and white picture with the word "boy" superimposed on the picture and an arrow pointing to the proof. It didn't feel right, but it was hard to argue with that picture. Every time I started experiencing doubts, I pulled it out again and convinced myself that I had just been hoping for another little girl. 

A second ultrasound about two weeks before the baby was born confirmed the first ultrasound. "It's definitely a boy!" the tech said as she moved the wand around my belly.

And then SHE was born.


I had convinced myself so thoroughly that the feeling had just been in my head that I was completely shocked when the doctor announced, "It's a girl!" Things finally made sense though. My mom told me later that she had never felt right about it being a boy either.

And then, I got pregnant with my fourth child. Once again, I had a feeling right from the start, but it was different this time. I just knew that there was something wrong with my baby and even further, I knew it was a genetic syndrome. At the time, the only one I could think of was Down Syndrome and so I thought that might be it. When I went in for my 20-week ultrasound, I braced myself for the news. Over the past few months, I had gotten to a place where I was at peace with it. 

The ultrasound showed a healthy growing baby boy. No defects were noted.

I was downright surprised at the news. The feeling didn't go away, and I thought maybe they had just missed the signs in the ultrasound.

Then Davy was born, seemingly healthy, albeit en caul or in his amniotic sac. When the doctor broke the sac, Davy was green from meconium, so they examined him closely to be sure he hadn't inhaled any of it. He did fine on room air and never needed any interventions. But he looked...different than my other babies had. Absolutely adorable and perfect, but different. And every time a doctor or nurse came in the room to check him out, they noticed little things. He had a sacral dimple, he didn't suck correctly, one of his ears was crumpled, he had wide-set eyes. Nothing seemed too concerning to them though. I kept waiting for someone to tell me he had Down Syndrome or something like that because of how he looked, but no one did, and I didn't want to speak up and seem like an overly worried mother. 


The feeling didn't go away after we brough him home from the hospital. When he was less than 2 weeks old, he started to struggle to eat, and his breathing sounded very junky. He was hospitalized at 3 weeks for his breathing which is when they discovered he had a Patent Foramen Ovale or PFO heart murmur. But still, no one seemed concerned, so I kept my thoughts to myself. At 2 months of age, he was hospitalized for failure to thrive because he was losing weight rapidly and unable to eat more than about 8-10 ounces of milk in a 24-hour period. During that hospitalization, they ran test after test on him and multiple specialists came to check him out. The geneticists were intrigued by him and noted dysmorphic or unusual facial features along with developmental delays, which they said most likely meant he had a genetic disorder of some kind. 

At 2 years of age, Davy was diagnosed with Ehlers Danlos Syndrome, a genetic disorder which it turned out all 3 of his siblings and I have as well. It explained a lot, but there were still things that didn't add up. Our geneticist was sure there was something else going on, and she was determined to get to the bottom of it. Finally, at the age of 7, a genetic test revealed that he had CDK13, a very rare genetic disorder. It explained everything from his hair type to his adorable little face with the button nose, to the eating difficulties he had as an infant. 


I firmly believe that the gut feeling I had during my pregnancy with Davy came from God. While one can never be truly ready to raise a child with special needs, God did help me be prepared for that possibility before Davy was even born and seven years before receiving the CDK13 diagnosis. 











Tuesday, October 11, 2022

A Glimpse Into the Future

I recently got a glimpse into my son's future.

Davy has CDK13, a rare genetic disorder that affects his development, speech, muscle tone, facial features, and more. It can also cause autism, which it does in Davy's case. 

I was at the bookstore one day when a boy about 13 or 14 years old came in with his mom. He was loudly vocal about his dislike for books in general and instead selected several dvds, he told his mom she was slacking when he was ready to check out and she was not, he did not seem to realize that he was in the cashier's bubble when he leaned way over the counter, and he loudly asked her several questions about how many books and how many dvds the bookstore carried. 

My first thought was that this kid was disrespectful and self-centered. 

Then, I noticed that his speech was kind of unclear and "sloppy" for lack of better word. I also noticed how his mom stayed calm throughout the entire visit as she encouraged him to read the books they had at home if he didn't want any from the store and explained to him each step of what they were doing.   

I realized that while there was a chance that this was a kid who just needed some discipline and to learn some social skills, there was also a good chance that this was a kid with special needs who was doing his best. 

And then, I realized how much he reminded me of Davy. Davy doesn't hold back on his opinions. He has very clear likes and dislikes which he is sure to share with others. He expects others to operate on his timetable. He has no sense of personal space. He is interested in details of how things work and doesn't hold back from asking questions. We are constantly working on social skills and being courteous and respectful to others, but he will always struggle with these things.

As I watched the boy exit the bookstore, I realized that I had just seen a glimpse into Davy's future and it broke my heart. Davy is eight years old now. As he gets older, it's becoming more obvious that he isn't like most kids his age. Each birthday is bittersweet as they remind me of how far he's come, but also, just how much he struggles with things that come naturally for most kids his age. When people look at Davy now and as he grows up, will they see a spoiled child who needs some serious discipline or will they see a child who is doing his best, but struggling to process and respond to everyday things? 

Please let this be your reminder to give people grace when you see them behaving "differently" in public. Many disabilities are invisible to others, but they're there just the same.   



  

Monday, August 30, 2021

A New Diagnosis for Davy


Thursday, April 29, 2021

Davy had an appointment with his geneticist that day to find out the results of his Whole Exome Sequencing or WES. It had been a few years since we'd done any genetic testing for Davy, and I was fully expecting the results to be the same as the other tests we'd done with nothing significant found. 

Several years earlier, our geneticist had told me that despite diagnosing Davy with hypermobile Ehlers Danlos Syndrome, she felt that he had another genetic syndrome as well and wanted to keep looking. EDS explained a lot of his issues, but there were still some things that didn't quite fit in that box. Multiple genetic tests had always come back negative so we had taken to writing things off as "that's just Davy!"


Once we were back in the exam room, I tried to keep a very impatient Davy calm and occupied while Hubby and I waited for the geneticist. 

When she entered the room, she had a stack of papers in her hand and a triumphant smile on her face. 

"We have answers!" 


I just about fell off my chair. I had been expecting her to tell us the test was negative, just like we'd been told so many times before over the last seven years

She started asking us questions that she already knew the answers to, having followed Davy since he was a year old: 
Did he have feeding issues? He had to have a feeding tube as an infant to keep him from starving to death.
Was his hair thick and curly? For sure. If we didn't keep it short, it was uncontrollable.
Did he have speech issues? He had a diagnosis of apraxia and struggled to speak and be understood. 
Did he have hypotonia? Yes, definitely.

As the questions continued, I was stunned at how well they fit Davy. It turned out that he had tested positive for a mutation on the CDK13 gene or CDK13 related disorder. It was newly discovered in 2017 and medical literature noted that only 44 individuals worldwide had been found to have it. Our geneticist had never even heard of it before Davy was diagnosed. 


When the geneticist was done talking to us, the genetic counselor sat down to help us navigate our new reality. He recommended joining a CDK13 support group on Facebook that he had stumbled on in his search for some information to share with us. Davy had two more appointments that day and before we had left the clinic, I had already found the group and requested to join. When the administrator contacted me to verify Davy's diagnosis before admitting me into the group, she mentioned that she had been able to easily pick Davy out of my profile picture, which had all four of my kids in it, based on his facial features which are unique to people with CDK13.

Once I joined the group, I found that CDK13, while very rare, isn't quite as rare as what our geneticist thought. We were the 170th family in the world to join the group because of their child's diagnosis and the group continues to grow. After seven years of not having answers to Davy's unique issues, being able to talk to other families and getting to "meet" their awesome CDK13 kiddos (many of whom look like siblings to Davy!) has been so amazing. 
We don't know exactly what Davy's future holds, but we do know that he doesn't have any of the potentially life-threatening issues that people with CDK13 sometimes have such as a heart defect or seizures. He does have quite a few of the other symptoms of it such as unique facial features, thick curly hair, speech issues, developmental delays, hypotonia, feeding issues, autism, gastrointestinal issues, reflux, and more. Some kids with CDK13 tend to be very cuddly and loving and Davy definitely has that trait which is one of the things I love about him. I wouldn't change him for the world. No matter what struggles he faces in life, he is exactly how God designed him and we will support him to always do his best. Davy is an amazing blessing and he is who he is because of his CDK13, not in spite of it. 

This shirt is available at the Sunshine and Spoons Shop

September 2nd is CDK13 Awareness Day. I'd love for you to help spread awareness so hopefully other families can find the answers and support they need. 

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September 2nd is CDK-13 Awareness Day! If you've never heard of it, learn more here: https://bit.ly/3zH4j8U
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I would appreciate it so much if you would share this post! You can also add a frame to your Facebook profile picture by searching for "CDK13" in the frames.






Monday, August 2, 2021

But If Not...: Praising God Through the Pain

At the beginning of July, Hubby and I packed up the whole family and we went for our fourth year to Camp Chetek's family camp. 

The week started off HOT and humid with temperatures reaching almost 95 degrees Fahrenheit on Monday. If you've been around here long enough, you probably know that heat and I don't mix. At all. Anything higher than about 70, and I'm headed straight for heat exhaustion. Generally speaking, if I get overheated, it takes me at least a week or two to recover depending on how bad it was. 

But If Not...: Praising God Through the Pain

This time, I didn't have a chance to recover and gain any spoons back. I had to jump straight into a week of family camp.

On Monday afternoon, I was in a pretty awful mood. I was grouchy because I felt absolutely horrible, and I knew that the rest of the week would be more of the same. I had been hoping to do at least a few activities with the kids, but knew that it wasn't going to happen (we did do the escape room on Wednesday though and that was fun!). I felt like I was letting my family down by not being able to do things with them, and I was not too happy that my body was once again letting me down by being a total jerk.


That night was our first chapel service of the week. The speaker for the week was Ben Everson (whose preaching and music I highly recommend!) and his sermon on Monday evening was on chapter three of Daniel. In case you don't remember what happens in that chapter or you don't have a Bible nearby, it's the account of Shadrach, Meshach, and Abednego when they refused to bow down to the golden statue that King Nebuchadnezzer had set up. The king had commanded that everyone bow down to the statue and if they didn't, they would be thrown into a fiery furnace. Shadrach, Meshach, and Abednego's response to that command is found in verses 16-18.

Shadrach, Meshach, and Abed-Nego answered and said to the king, “O Nebuchadnezzar, we have no need to answer you in this matter. If that is the case, our God whom we serve is able to deliver us from the burning fiery furnace, and He will deliver us from your hand, O king. But if not, let it be known to you, O king, that we do not serve your gods, nor will we worship the gold image which you have set up.”

To sum up, they told the king that they would not bow down to the statue and that God would be able to save them from the fire. But the first three words of verse 18 are where it gets real. 

"But if not..."

Even if God didn't choose to save them from the fiery furnace, they would still serve Him.  

My troubles looked a little less daunting at that point. 

That night, I decided that if God allowed me to have health issues that week, I would still serve Him. Period. I would not allow those issues to ruin a week spent with my family learning more about Jesus.


Guess what happened next?!?

My health continued to tank all week. 

By Wednesday, all of the walking, the heat from Monday, the sudden plunge into cold temperatures (90s on Monday and by Wednesday, it was in the 60s), and everything else was really taking its toll on me. My vision was wonky and made me feel like I was walking around cross-eyed, my joints were in excruciating pain from giving out on me and subluxing, my muscles were spasming almost constantly, my fatigue was so severe that I could barely put one foot in front of the other and it didn't help that my foot drop had kicked into overdrive making me trip frequently, my autonomic system had taken a vacation and all of my signals (am I hot or cold? hungry or full? etc.) were mixed up. It will be weeks before I get back to my baseline.


But it was still a fun, encouraging week, and the only reason was because I chose to focus on God instead of my problems. I asked Him to heal my pain and fatigue so I could spend some time actually doing things with my family, but He didn't. 

"But if not..."

Some people would probably take this opportunity to ask why God wouldn't heal me if He truly loved me. I covered that in this post, but to sum it up, I learned a lot more and grew as a believer more last week at family camp than I would have if my health had been great. My circumstances do not dictate my relationship with God. 

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"But If Not..." Praising God through the pain : https://bit.ly/3ykNyQt

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Has there been a time in your life when you chose to continue to serve God through a trial? I'd love to hear your story!

















Tuesday, June 29, 2021

Introducing the ComfiGO Booster Seat from ClypX

Disclaimer: I received a product in exchange for my review. However, all views and opinions are my own. 

It's been over 13 years since I installed the first carseat in my car. 

Full disclaimer: I couldn't figure it out and actually asked my sister, aka the carseat wizard, to do it for me. 

But anyway...the point is that I've had carseats in my vehicles for a long time. From infant carriers to convertible seats to backless boosters, we've been through them all and have usually had multiple carseats installed at a time. 

Introducing the ComfiGO Booster Seat from ClypX

Right now, my two oldest kids, Katie and Nate, are 13 and 11 years old respectively and are out of carseats. The two younger ones, Anna and Davy, ages 8 and 7 are both still in booster seats. 

Introducing the ComfiGO Booster Seat from ClypX
Davy was not in the mood for pictures, but we got one!

We keep extra backless boosters in Hubby's pickup and at my in-law's, but they seem to always be in the way and needing to be moved in and out of vehicles. So, when I saw the new ComfiGO booster seat from ClypX, I was pretty excited about how small and lightweight it was. The center seat of my minivan's bench seat is almost unusable when there are two booster seats being used there and anytime I have an extra child (friend, niece, nephew, etc.) riding along with me who needs a booster seat, I have to reconfigure our regular seating for the kids. 

Introducing the ComfiGO Booster Seat from ClypX

Standard backless boosters work by bringing the child up to the seatbelt. The ComfiGO works by bringing the seatbelt down to the child. It's easily portable and would be especially great for grandparents or families who are traveling. The flat, flexible seat has anti-slip rubber on the bottom to keep it in place and also has the option to connect it to your vehicle's LATCH system. It's ready to go in just three easy steps (so easy that a brain fogged, exhausted mom like myself could figure it out in less than five minutes!) and, once it's adjusted to your child, only needs to be readjusted when your child grows.

Here's a video that shows just how easy it is to install the ComfiGO booster seat:

ClypX® | Installation of comfiGO® Kids Friendly Booster Seat, Full Version from ClypX on Vimeo.


The ComfiGO is for kids ages four and up who weigh between 40 and 110 pounds and are between 40 and 57 inches tall. When 8-year-old Anna sat down on it, she couldn't stop gushing about how much more comfortable it is than her regular hard boosters. After I adjusted it to be just right for her, she was able to easily unbuckle and rebuckle her seatbelt on her own.

Introducing the ComfiGO Booster Seat from ClypX

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Introducing the ComfiGO Booster Seat from ClypXhttps://bit.ly/2SyGTCq
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The ComfiGO booster seat is a definite winner in my book and will get a lot of use in our family! 

What do you like best about the ComfiGO?







Tuesday, June 1, 2021

Essential Tools for Moms with Brain Fog

 This post contains referral links which means that if you purchase from one of my links, I will receive a small percentage of the sale.  Don't worry, this won't cost you any extra!


If you have a chronic illness, you probably experience brain fog at least some of the time. 

Confession: I wrote that first sentence and then stared at it blankly for 20 minutes. Brain fog, anyone?

Anyway...like I was saying, brain fog is real and it can make life pretty difficult sometimes. Add in a few kids (hello mom brain!) and it gets really interesting. The struggle is real.

Essential Tools for Moms with Brain Fog

I use a lot of tools to help me manage my brain fog. My smartphone is the biggest one and what I refer to as my "external brain." I also work hard to stay organized with my home and schedule, stick to routines so I don't miss anything, and break down big tasks into smaller, more manageable ones.  

I'm going to share some tips, tricks, and tools for brain fog with you in the hopes that they'll help you as well. 


I used to carry a paper planner with me at all times to keep track of my calendar, but I needed to lighten up my purse to cut down on shoulder strain so I reluctantly made the switch to using a Google calendar. It turns out that I love it! I especially love that I can sync it with my husband and share it with my sister.
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This one's a little less high-tech, but still very useful. I use them to leave reminders for myself around the house, notes for my kids, and I even write Bible verses on them so I can see them throughout my day. You can even get sticky notes pre-printed with Bible verses here
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Phone alarm clock
Thanks to distance learning with four kids who all have virtual classes, I currently have 17 alarms set to go off of my phone throughout the school day. Thankfully, that's not the norm for me, but I do use my phone alarm on a regular basis to help me remember things such as appointments, picking kids up from activities, and just about anything else.
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If you're like me, you're constantly looking for your phone, your keys, your purse, your mind, etc. Tile can't help you when you're losing your mind, but it's great for the other stuff! 
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I don't write by hand as much anymore because it hurts my fingers and hands, but I'm still pretty obsessed with notebooks and always have at least one going at all times. I use it for my devotions, to write lists and reminders down, to plan things, etc. When I discovered smart notebooks, it blew my mind! Write in the notebook with a Pilot FriXion erasable pen, scan it and upload to your favorite cloud service, erase, and start again. I love that what I write can become digital so I can save and easily find it again. Plus, it's endlessly reusable!
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Flaredown App
This app helps you track your symptoms and is available for Androids and iPhones. This can make a huge difference in managing your health and being able to show your doctors exactly what's going on with you. 
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Medisafe App
Do you ever forget to take your medicine or is that just me? If that's something you struggle with too, this app can help remind you to take your medication and can even be synced with others so someone else can check in on you or so you can make sure your child or other loved one is taking their medicine. Oh, and did I mention that it's free??
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I've used this app for about 10 years now and LOVE it. It helps me keep my house from reaching disaster levels by giving me a list of simple chores to do each day. They can be customized and even assigned to others in your house. 
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I haven't personally used this app, but I've heard rave reviews about it from lots of other moms so I thought I better include it in the list. Cozi is a family organizer that keeps your whole family on track and in communication with each other. 
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If you prefer to go old school, this book covers a lot of ground and can make tracking your symptoms and other aspects of your care easy to do and share.
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Need some tips for how to clean your house while minimizing your pain and fatigue? This book covers it all and is a must-read.
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This last one isn't really a tool, but it's a blog post about getting organized from Chronic Illness Warrior Life that I found to be very helpful. Check it out! 

What tools do you use to cope with brain fog?







Wednesday, May 12, 2021

Win a Signed Copy of "Yet Will I Praise Him!"

This post contains referral links which means that if you purchase from one of my links, I will receive a small percentage of the sale.  Don't worry, this won't cost you any extra!

Guess what? Today is my birthday! Normally, I don't get too excited about my birthday because being the center of attention just isn't my thing, but this year, I can't wait! This year, I'm doing something a little different that takes the focus off of me and puts it on you. Yup, you! 


For my birthday, I'm giving away five signed copies of my book, Yet Will I Praise Him. The giveaway will run from May 12 through May 31st on Goodreads. You can enter via the widget below or by clicking here

Goodreads Book Giveaway

Yet Will I Praise Him by Hannah Wingert

Yet Will I Praise Him

by Hannah Wingert

Giveaway ends May 31, 2021.

See the giveaway details at Goodreads.

Enter Giveaway

I would love it if you would share the giveaway with anyone you know who might benefit from the book as well!