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Stomatitis

This past winter felt especially hard on our family. In addition to relentless dark, grey skies with limited snow, the hubs lost his job, had kidney stone surgery, then had complications from that surgery that put him back in the hospital for a few days. It seems like everyone had been fighting illness or some form of or another.

One of the weird illnesses that made its way into our house was Stomatitis. A ‘scary’ sounding name for a mouth virus in the herpes family. Closely related to canker sores or cold sores, stomatitis makes the mouth and tongue itch.

You can read about Stomatitis via Wikipedia here, but a simple explanation can be found at the Encyclopedia of Children’s Health where it states:

Stomatitis is an inflammation of the mucous lining of the mouth, which may involve the cheeks, gums, tongue, lips, and roof or floor of the mouth. The word “stomatitis” literally means inflammation of the mouth.
Depending upon its cause, stomatitis may or may not be contagious. Herpes stomatitis is considered contagious. Children may be exposed through kissing, sharing food, or playing in close contact with others who have an active herpes infection, such as a cold sore. Aphthous stomatitis is not contagious.

Poor E had been dealing with an itchy tongue for several weeks. However, he only mentioned it to us once or twice during that time. Then, one night, it got bad. We tried allergy medication, we tried numbing cough drops; after lots of commotion he finally fell asleep many hours past his bedtime, only to wake up again after just three hours of sleep. The next day, we had to cancel our family plans for the day due to his limited sleep and, after trying to get through the day, took him to urgent care.

With fresh diagnosis in hand, he was prescribed a lidocaine-based mouthwash to numb the tongue and mouth as needed. Basically, since it’s a virus, it must run its course.

Unfortunately, the sensations of itching and numbing pushed E into sensory overload for days. There was much more stimming, tempers and overloads; so much so that his ability to focus and follow directions as normal was just about non-existent. It was challenging, but we survived, and it passed.

One of my favorite sayings that is all too familiar in our house (although I don’t know the author) is:

“This too shall pass. It’ll pass like a kidney stone, but it will pass!”

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Excoriation

Like many diagnosed with autism, our boys have comorbid diagnoses. One that is on our radar currently is excoriation, a skin picking disorder.

Psychology Today defines it this way:

Also known as excoriation disorder, or compulsive skin picking, dermatillomania is a psychological condition that manifests in the form of repetitive touching, scratching, picking, and digging at one’s own skin. It is an impulse-control disorder and one of several body-focused repetitive behaviors (BFRB) currently classified in the DSM-5 as Obsessive Compulsive and Related Disorders. Dermatillomania affects up to 5 percent of the population and approximately 75% of those are female. The difference between dermatillomania and normal picking at skin imperfections and irregularities, is that the behavior is chronic, results in tissue damage, and causes the individual marked distress and dysfunction.

Repetitive skin picking extends to pulling, scraping, and even biting both healthy and damaged skin from various parts of the body, though most often on the face, hands, fingers, arms, and legs. This behavior, which commonly begins in adolescence but can occur at any age, often results in visible skin damage and disfigurement from lesions, discoloration, open wounds, scars, and infections.

…skin picking can also occur with dermatological conditions, autoimmune disorders, opiate withdrawal, and developmental disorders such as autism.

Unfortunately, E is a skin picker. The sad part is that he is aware he has this issue, hates the fact that he picks, and yet is completely unaware of the action when doing it.

At first, we didn’t think much of it. He had a red spot on his arm here or there, but more recently it is becoming more and more of a visible issue. His arms and, to a lesser extent, his face, are covered in red marks, scratches and scabs. E, thankfully, is not yet self-conscious about his appearance so isn’t worried about how it looks. However, people of the general public see the marks, and doctors unfamiliar with his issues have expressed their concern. Honestly, it looks like he has chicken pox scabs.

Over the years, I’ve learned to ignore strangers’ looks and judgement. What bothers me is that it causes them to worry about him spreading something infectious. I guess it shouldn’t matter, but it does. If I were a parent on the outside, and I walked past a kid, playing at the park or wherever, and saw all those red spots and scabs, I’d wonder if he was sick; if he was contagious. I wish I could just carry a sign wherever he goes that says, “He’s not sick. He’s not abused. He just picks his skin.” Do I need to make him cover his arms even in warm weather to prevent the looks and curiosity? Probably not, but the worry will hover in my mind, especially when I see the judgmental looks.

I worry (and I know he does too) about the potential issues as a result of picking. Abscesses, infection, the needing of a skin graft, or even suicidal thoughts when he gets older. We are working with a psychologist and psychiatrist to help control the picking. On one hand, if it’s a stim, I hate to stifle that, but on the other hand, his health could be at risk. It would be better to adjust his stim to another activity.

One of the ideas we tried was having him wear gloves. That lasted maybe half a day. The gloves bothered him by making his hands too hot; he felt like he couldn’t play on his tablet or hold a pencil properly; all huge issues in an autism household. So, for now, the idea is abandoned, but maybe one day I’ll find just the right pair of gloves. In the meantime, E, his dad and myself all need to be vigilant and redirect him when we see him picking.

Autism, Anxiety and more oh my!

As most of my readers know, my family and I have been on a tumultuous trip to find a diagnosis of our youngest kiddo. Early on, we knew he viewed life a bit different, but we couldn’t figure out if his behavior was unique, or if he was emulating his older brother, who is on the autism spectrum. He seemed neurotypical most of the time but had, what seemed like, behavioral and sensory issues.

At age 5 and 6 he was observed twice by the autism clinic that had diagnosed his brother, due to the increased chance of a younger child having autism when a sibling does. Both times that the doctor saw C, she felt that he was “too social” to merit a formal evaluation and/or diagnosis. Considering that underdeveloped social behavior is often a key in diagnosis, we felt that this result meant that we could move on from autism and proceed in another direction.

As he got older, he seemed to socialize appropriately, although minimally, with preschool kids and other friends. He asked to have playdates with friends, something we hadn’t yet encountered with E. He excelled in his preschool environment. At home, he still had many behavioral issues though. He was extremely sensitive emotionally, and to things like food textures and loud sounds. Red flags started showing up in my mind, making me suspect that the negative autism diagnosis was wrong.

Potty training seemed to go well enough and he did so well in preschool that he started kindergarten as planned. This is when things got really difficult. He started having potty accidents at school followed by emotional meltdowns from the embarrassment. He felt like no one liked him. It was too loud and busy. It overwhelmed him. The teacher tried his best and felt like C was just a little more emotional than other students but that he’d grow out of it. After-school pickup became the worst part of my day. He’d completely fall apart at home, often as soon as he got in the car. Then morning drop-off became a challenge. He started resisting getting dressed, getting out of the car and so on. His teacher reported that he often would curl up and cry under one of the tables during snack time, rather than choose a snack. Soon, our family life began to suffer. Hubby and I were so stressed and overwhelmed. We were struggling to find the tools to help E with his many issues, as well as figure out what was going on with C.

We made the decision to homeschool. We had already started homeschooling E, due to his intense anxiety. It seemed to help and make things easier for him. We joined an alternative school program where the boys did their work at home, led by me, then met with their official teacher weekly to review what they were learning and make sure that they were progressing. Eventually, C started to fight even going to this weekly meeting. When he did go, he wouldn’t talk much or share with the teacher, especially if I was in the room. Some days, I couldn’t even get him to leave the house.

As time went on, we tried to meet with another pediatric psych doctor for some sort of evaluation. He did a perfunctory evaluation and was very unhelpful, indicating that we were not strict enough as parents and we needed to do better, claiming that there was nothing wrong with our child; there was no need for evaluation or intervention. Looking for a second opinion, we found a local family psychologist who, right away, noticed ADHD symptoms and recommended we get him occupational and physical therapy evaluations. We were able to connect with a wonderful place, several hours away, that did evaluations and recommended therapy for both of our boys. They even caught an eye issue that C had, and sent us for a formal visual therapy evaluation.

After all this time we were finally getting some help. The drawback was that it was quite a distance for us to reach these therapies; about 3.5 hours each way. We would end up staying away from home (including travel days) for three days, every other week. This took a toll on us all. Especially the boys. They would suffer from a “sensory hangover” for days afterwards, which led to less school and activity. Every other week was a wash. It was expensive and time consuming. It was exhausting to me, being the chauffeur so that dad could work.

On top of all that, we realized that C was not using the bathroom as expected. Once it dawned on us, we started keeping track and noticed that he often would go a week to three weeks between bowel movements. At one point, he became so impacted that he couldn’t urinate, requiring a trip in a helicopter to the nearest hospital. Other times, we would end up in a children’s ER (A&E), which was another impressive distance from home.
Because of how far away we lived from advanced medical facilities, we made the decision to uproot and move to a city 300 miles (480km) away. We sacrificed a lot to make that move happen but, if it helped the boys, it would be worth it.

Even in our new home, C’s behavior continued to deteriorate. His anxiety took over. His self-esteem crashed. His GI issues became worse. We found a great pediatrician who gave us referrals to specialists. We started working with a pediatric gastroenterologist (GI doctor). After three hospital stays for bowel cleanouts in a year and a half, we were able to get a referral to a psychologist who performed a neuropsychological evaluation. We were given tentative diagnoses. Tentative doesn’t work for insurance, so we decided to pursue a more official diagnosis.

We were put in touch with a facility that works exclusively with pediatric mental health. After evaluations by a psychiatrist and a psychologist, and much waiting and uncertainty, we finally have results. C has officially been diagnosed with High Functioning Autism, ADHD, Anxiety and Depression; a potent combination of issues. One of the things I suspect got in the way of a true diagnosis for so long was Masking. Masking happens with kids on the spectrum who are aware of their differences and are skilled at hiding them so that they appear normal, helping them avoid social stigma.
Along with this, we realized that our GI doctor was convinced that C’s issues were simply behavioral, with no physiological cause. Since C is very distressed by his bowel issues and tries, without prompting, to do what he needs to do, we decided to get a second opinion. Something that has worried me, is how much medication the previous GI doctor had C taking. Most of the medications are not meant for long-term use due to dependency issues. Were we making things worse?

Our new GI doctor was amazing. He is the head of the pediatric GI department and is a professor at the medical school. Apparently, he doesn’t often take patients but, C’s issues intrigued him (maybe he just felt sorry for us). He took what we already had gone through and moved forward, rather than rehashing everything. He had us take C off all the medication the prior GI doc has prescribed and agreed that there is a good chance that there is something more than simply behavioral withholding going on. He had us meet with a GI psychologist and GI dietitian to see if they could offer any additional advice. Both felt that we have been doing the right things and didn’t offer much in the way of help. Disappointing, but it was worth a shot. Now we are approaching the day that C is to have a small procedure called an Anorectal Manometry. This uses a catheter and a balloon to measure the rectal muscle contractions to see if they are functioning properly. Hopefully this will help us determine how to proceed and let our wonderful nine-year-old boy enjoy a normal life in normal underwear. Until then, all we can do is take it a day at a time.

The Imagined Fear

snarlA German proverb states: “Fear makes the wolf bigger than he is.”

Fear presents itself in our lives in many ways. It can be anywhere from mild to severe. It can seem silly or it can feel so intense that we shut down. Where does this fear come from?

In our brain, there is a small region called the amygdala. This small region is responsible for our fight-or-flight response and other intense emotions. An article from Smithstonian.com,What Happens in the Brain When We Feel Fear? describes it really well:

“This almond-shaped set of nuclei in the temporal lobe of the brain is dedicated to detecting the emotional salience of the stimuli – how much something stands out to us.

For example, the amygdala activates whenever we see a human face with an emotion. This reaction is more pronounced with anger and fear. A threat stimulus, such as the sight of a predator, triggers a fear response in the amygdala, which activates areas involved in preparation for motor functions involved in fight or flight. It also triggers release of stress hormones and sympathetic nervous system.

This leads to bodily changes that prepare us to be more efficient in a danger: The brain becomes hyperalert, pupils dilate, the bronchi dilate and breathing accelerates. Heart rate and blood pressure rise. Blood flow and stream of glucose to the skeletal muscles increase. Organs not vital in survival such as the gastrointestinal system slow down.”

All of this works to keep us safe from a perceived threat. What happens, though, when that perceived threat is not actually a threat? Or not perceived but imagined. Your body fb9da28e9e733228171c5b79d542704cstarts reacting, your feelings of fear rise, and you feel anxious. If you realize that you are safe and not in immediate danger, your system should revert to a calm state. In essence, you experienced the “wolf bigger than it was” for a brief moment. It’s an amazing response system.

However, there are times when our amygdala gets things wrong. We get this sense of fear than ends up taking over and becoming larger than needed. This is the case with both of our boys, but today I’m focusing on Mr. E. He has high anxiety and has developed Entomophobia. Wikipedia states:

Entomophobia (also known as insectophobia) is a specific phobia characterized by an excessive or unrealistic fear of one or more classes of insect… entomophobia leads to behavioral changes: the person with entomophobia will avoid situations where they may encounter the specific type of insect.

Way before we knew he had anxiety or autism, he presented with typical toddler behavior when it came to playing outside and exploring. We took frequent walks. He Lizard-Brain_whitewould stoop to look at this puddle or that bug. Then came the day of the bee attack on his younger brother. E was probably 4 years old at the time and C was about 19 months. The kids were outside playing with their cousins, who had come from California to visit. C got to exploring (as kids do) and found a wasp nest under our deck, which he proceeded to pull apart. There are discrepancies as to the number of times C was stung before we could get him in the house to safety but, it was more than a few. E saw it happen from a distance and has forever been traumatized by it. Since then, C has been stung twice more and yet, still has no issues with bees. Thank goodness he was not allergic!

So, E has been afraid of bees since. Unfortunately, he has not been able to conquer this fear with logic and it has morphed into a phobia (Apiphobia ). This, in turn, has morphed into a fear of all bugs and insects.

His phobia has become so intense that he struggles to go outside for any reason. He is unable to walk the 50 feet (15m) to the mailbox by himself. Unable to enjoy riding his bike or playing outside with the dogs. He even struggles just getting to the car if it’s parked in the driveway. He has not given up on trying to overcome it but, he has struggled to find success.

"Eeuuuggghhhh! These humans get bigger every year."
“Eeuuuggghhhh! These humans get bigger every year.”

After a recent meeting with his new psychologist, we now have a plan. E desperately wants to crush this phobia into a thing of the past. With his willingness, we are about to take on what is known as Exposure Therapy. From what I understand, there are generally two schools of thought regarding “treating/curing” phobias.

The first is call Flooding”. This type of exposure therapy can be a faster approach to ending a phobia but, it can also be more traumatic to begin and many people give up before they succeed. For example, if we were using Flooding to treat E’s apiphobia, he would be subjected to sitting in a room full of bees. This would go on for a duration and over time, and most likely several sessions, his amygdala would learn that he is not going to be hurt and his fear diminishes; essentially, retraining his fight-or-flight response to seeing a bee.

However, we have decided to go with the Fear Hierarchy method. This is slow and steady; the ‘turtle’ method as opposed to the ‘rabbit’ method of flooding. With E’s anxiety levels we felt this was the better course of treatment.

Our plan has started with identifying his fear (bugs), what he believes will happen (they might cause harm), and then creating a list of, at minimum, ten activities that he is willing to work at over time in order to desensitize himself to bugs. We’ve used a scale of 1-10, with 1 being easy, and 10 being very challenging, to itemize his list of activities. We will start with an easy item; something that he scored as a 1. We will spend 30 minutes a day doing that activity until he scores it as 0. Basically, it is no longer causing fear or anxiety. For E, his first activity is looking at pictures of bugs. That’s it. Knowing that it makes him slightly uncomfortable, but is something he can manage right away, we, ideally, will spend just a few days doing this before moving on to the next level. Other items on the list register at a 10 on the comfort scale. Something like holding a bug or having one land on him, is very uncomfortable and may take weeks or months of work. Time is not the important thing but, going slow, keeping him comfortable, and, building his confidence. These things are what’s important to taking that next step and retraining his amygdala to not react.wolf pup

So, if the German Proverb states that fear makes the wolf bigger, then we are trying to take that fear away and make the wolf a puppy.

The Monster

A monster is coming for you and you need to get away fast. The monster roars. Looking behind to judge the distance, you trip and fall down a hole. It feels like you fall forever then, suddenly, you smash down onto the bottom of this immense, dark pit.

You look around, trying to see through the darkness for roots or rocks to help you climb your way out, but you see nothing. Looking toward the sky, you see the monster. It’s pacing and howling; watching you, waiting for you to attempt escape. Feeling hopeless, exhausted, and sore, you curl up in the darkness and wait for the nightmare to end.

This, my friends, is where I’ve been. I’ve been in that dark pit of darkness, of hopelessness, struggling to find a way out. Some days I think I’ve found a path of nooks and crannies that will lead me out, only to have the ground give way and fall back to the bottom. On some days, a friend is there, temporarily scaring the monster away and lowering a ladder, only they let it go too soon, and I fall again.

This monssigns-of-burnoutter is my anxiety, depression, and caregiver burnout. On most days, I feel pretty good. I take medication to help. I’m not ashamed of it. (I shudder to think of what kind of person I’d be without it.) It’s like a fence, built around me, keeping the monster at bay. There are days, moments in life though, where the fence fails, and the monster gets through.

Many times, I’ll think I’m doing great and then the monster is on me before I know it. This is, unfortunately, what has happened recently. I’m plodding along, caring for my family and things fall apart. I’m not sick; just tired, on edge and cold. I sleep deep but wake up feeling exhausted. I want to eat or snack, but nothing sounds appealing. I’ve lost interest in things that previously made me happy. I can’t get into a book; no story keeps my interest. I know there are things that could occupy me, but I have no motivation to do them. I feel bored but can’t motivate myself to fix it. These are the signs I’ve been trying to ignore. Then came the anxiety. Attempting to craft something, bake finesomething, or paint something brought tightness in my chest. The tightness turned to shortness of breath and heart palpitations. Panic! Panic at committing to doing something. Panic that lasted hours not minutes. Meanwhile, I’d smile when I saw friends or family. I’d say I was doing “fine.” I kept my problems inside.

This, I believe, is why I kept falling to the bottom of the nightmare pit time and again. I felt that no one wanted to know how things really were. Or maybe they thought they did and persisted, so the dam burst open and now they’re looking at me with wide eyes, like I’ve lost my mind, and are terrified that I’ll keep going.

I don’t like to talk about myself because everyone has problems – I’m no different, I’m no one special. And one negative thought leads to another, and pretty soon, the shame spiral starts. You’re worthless. You have no purpose. I rarely go that dark, but I can get there.

I’ve recently seen friends post on social media inspirational sayings that show support for those with similar mental health issues. I’ve seen celebrities, admitting that they deal with depression and showing support for others who do as well. That’s a great start but, honestly, I see depression as a hidden illness/disability along the same lines as my boys’ autism. It’s not always obvious from the outside. It’s a sneaky, subtle thing. You can’t “just get up and feel better.”

For me, time has been the biggest contributing factor to my healing process. My husband has been an amazing support, especially since he has his own monsters to battle. I’ve realized that being open and talking about what is actually going on helps. Even if you are unsure of what the other person’s reaction might be, it’s better to get it out there, rather than buried down inside, waiting to ambush you at any given moment.

Unfortunately, there is no quick fix. Many have used therapy, journaling, exercise, and other tactics to reset their mindset and feel better. It takes time, commitment, and acknowledging your imperfections. It takes growth as a person, and understanding and support from those around you. You may never truly win your fight against it but, if you keep fighting, you will survive it. You will have good days and you will have bad days. But, one day, you will see light. You will find your way out of the dark pit and successfully fight off the monster.

The Importance of Self-Care

“It all begins with you. If you do not care for yourself, you will not be strong enough
to care for anything in life.” ~ Leon Brown

Today I want to talk about self-care. Self-care is vital to everyone but, even more so for those who are caregivers. What is self-care? A great explanation can be found at the parenting blog, “This Mom Learns,” where the author explains it like this:

 What is Self Care?

Self care is the act of taking care of yourself. I learned about self care back when I was in graduate school, and how it is important to practice to avoid burn out in a career. Being a parent is a career, so it is important for us to remember that self care is important.

Self care is doing exactly what you need to do to feel the best all around. This includes mentally, physically, and emotionally. Each person has their own way to give themselves self care. This can be anything from getting your hair done to making time to exercise regularly to ensuring you have time to read each evening before bed.

Though it can be harder to practice self care as a parent, taking care of yourself should not be overlooked. There are many benefits that result from a self care routine. If you are not taking care of yourself, eventually it can lead to overwhelming stress and a lack of confidence, and these things can impact your relationships with family and friends.

Self-care is so easy to talk about, but so much harder to practice. I’ve been a mom for almost 12 years now and I have learned from some challenging situations just how important it is.

After the birth of our second child, we almost felt like we had to relearn everything about parenting since having a second is so different. You must learn to share yourself in more ways. As they grow, they have different schedules. Maybe you used to find time for self-care when your first child napped but, now, your second isn’t on the same nap schedule or the older one no longer naps. You adapt, you get busy, and any time you had for yourself has disappeared.

I, personally, have never been one to put myself first. I put the kids first, then the husband and, if there was time, I might do something for me. I’ve faced caregiver burnout on more than one occasion. I have mostly dealt with mental burnout, but I have also dealt with physical burnout from a lack of self-care. How so?

Back when Mr. C was 2-3 years old, I was wrestling with getting him dressed for preschool, so I could go to work. I was sitting on the living room floor, wrestling him into his clothes as he fought back, thoroughly enjoying the “game.” I lunged forward to grab him and stopped cold. Unbelievable pain shot out from my low back, immobilizing me. I managed to struggle up off the floor and flop onto the couch for a moment. I assessed and think I’m ok, if I move carefully. (See here? This is where I should have added some self-care and called in sick to work.) After a bit of rest, I need to go to the bathroom. As I sit down, this simple movement freezes me in my tracks. I am sitting there, with my pants down, and I cannot get up! I’m panicked. Thankfully, I had my phone in my pants pocket. I quickly dial the hubs. He can’t get away due to some emergency at work, so I call my mother-in-law, who lives in the same town. (Side note: Having your MIL come lift you off the toilet and pull up your pants should definitely be on your bucket list.) She was an amazing help. She got me into bed, got the kids to school, and took care of our family when hubby was at work, for at least two weeks. (Another aspect of self-care is accepting or, even better, asking for help.)

Later that day, my husband drove me to the chiropractor. He was able to adjust me with difficulty, and now it’s time to go but, oh, my goodness! I cannot get up. The pain is just too much. Hubby had to go get our family doctor who, thankfully, was in the office space next door. The doctor came and give me a shot of medicine for the pain and, eventually, with the use of a cane, my husband, and the chiropractor, I was able to get off the adjustment table, and into the car to go home.

I was on bed rest for three weeks. Hubby worked from home as much as possible and MIL took care of things when he couldn’t. An MRI showed a one herniated and two bulging discs in my low back. I had no choice but to rest. I’d get up and loop the kitchen island with my cane and then lay back down. It was torture for me– physically and mentally. After a time, I was able to resume limited, normal duties.

So, how does this apply to self-care? Well, if I had taken more time to rest, exercise, and take regular breaks from my hectic life, I may have been in better shape to deal with the ongoing physical pain and limitations I faced for nearly six years. I could have listened to my body when it was tired, rather than pushing through because things needed to be done.

Over the next several years, I’d have days when my back issue would flare up and I’d have to slow down and take it a bit easier. I was told to avoid things like pushing the shopping cart or vacuuming or activities like that which would cause me to bend and twist the injured area. I had to rely heavily on my husband to pick up the slack and do the normal household things that I used to do. I had to give up activities I loved, like bike riding, yard work or hiking. The irony is that these things could have been used as self-care since I enjoyed doing them.

Fast forward to January of this year. I was on a road trip with my family. After three days in the car, my back injury flared up badly. I rested for several days, rotating heat and ice, took anti-inflammatory medications, saw the chiropractor. Any little activity would set it off. Eventually, I saw an orthopedic spine surgeon who found that I had a new herniated disc, right below the previous one. I had surgery on May 4th. The surgery was a microdiscectomy and I was home that same day, carefully walking around. I am still in the recovery phase and have weekly physical therapy sessions but, I am already more active and mobile than I have been in 6 years. Not only am I in less pain, but I’m also mentally happier because I feel well enough to do the things I enjoy again.

All this, circles back to self-care. This is a must on my list now. Maybe it’s simply taking an extra-long shower, making my kids fix their own lunch instead of doing it for them, or more complex things like being okay with letting go of some things, asking for and accepting help, or even trying to get out of the house, alone, for a bit. These things all play into my self-care program. I am still learning and researching ideas to figure out what works best for my needs. I have a whole Pinterest board on self-care. Each one of us has specific things that fills our cup. Find what fills your and use it. It is so important.

If you’re struggling, as I often do, ask yourself, “If I fall apart, if I break, who is there to care of the things that I can no longer do?” Isn’t it better, not only for yourself, but those around you, if you take little bits of time to heal yourself as needed, so you can keep on caring for those ever-so-important things like your kiddos?

It’s like one of my favorite lines from the movie The Princess Bride:

“If you haven’t got your health, then you haven’t got anything.”

princess-bride-6

 

 

Box of Chocolates

Today, I have no profound news to share but, I want to tell you the story of my day.

We live in the Pacific Northwest and, as you may or may not know, we have been under a blanket of smoke for quite some time due to various wild fires in just about every direction. The air quality has been deemed unhealthy for select groups, like those with asthma and so on. Not surprisingly, E falls into that category so, we have mostly remained indoors.

Today, the air was clear and the temperature was cooler. It just screamed, “Go Outside!” After a successful doctor’s appointment, we decided to go to the zoo; enjoy the animals, get some good exercise and, generally, just breathe in fresh air. Both of the boys were on board with this idea, which is rare. Usually, one wants the opposite of the other.

As we exit the freeway, we are already seeing a long line of cars, slowly creeping towards the zoo parking lot. Then we see signs at each lot, stating that that parking lot is full. I cannot stress enough how crowded this place was. People were everywhere! Normally, I’m a person that thinks, “ugh, people…” and would head home and come another day. Today, however, probably spurred on by a feeling of cabin fever, and the boys still wanting to go, we circle the lots and head for the overflow parking. As, we are driving, E is getting quieter and quieter. We park and hop on a school bus that’s being used as a shuttle. E, still quiet, sits by the window and stares out, while C is a wiggle-worm on my lap thanks to an over-full bus. I ask E if he is okay. He mumbles that he’s fine, just tired. A typical canned response. But he is not fine. He is overwhelmed by the thought of all the people at the zoo and those riding on the bus with us. C’s activity and noises irks him. He gets grumbly.

Mind you, the ride is likely no more than 5 minutes. However, it’s just enough time to push E over the edge towards the “Tween Attitude.” When we get off the bus, C starts skipping along ahead of us towards the gate and E starts parenting him, telling him to stop this and stop that. I, then, have to chide E and remind him that I am the parent and can handle anything C does that might be wrong.

Our first stop is the bathroom. As we wait for E, C spots the “very special” vending machine. The only place he knows of to get Dippin Dots.’ (For those who don’t know, Dippin’ Dots is an ice cream snack made by flash freezing drops of ice cream in liquid nitrogen.)  I know that eating a frozen treat will make him cold, so I tell him we will grab some on the way out so that he can have the warmth of the car after he finishes it. All is well on that front for the time being.

E seems cranky but alright, and we proceed to wander. I let the boys lead and choose what we see. E loves to stop at all the educational spots: solve all the puzzles, learn all the things. Things are going well, aside from his parenting instincts refusing to wait until he has his own child. However, as we progress, maybe ten minutes into our trip, he is starting to “act out.” Now, when E acts out, it’s not your typical bad behavior or meltdown scenario. He starts growling, walking tense, and mouthing off at every turn. This is partly due to his age and partly due to his ASD. Every time I try to chat with him and soothe him, it’s like he’s smacking me but with his words. He is cranky, and I seem to be making it worse. So, I leave him be, knowing he will soothe himself eventually.

We were able to see a few of the animals that we haven’t yet seen on this visit. Usually, they are asleep in their dens or out of sight. This time however, we saw the elusive bobcats, leopards, and tigers. Now, my boys are huge cat fans, so this worked wonders to improve Mr. Grumpy Pants’ attitude.

Danger-Will-RobinsonAfter a few hours, we were all satisfied and head for the exit. C, still skipping all over creation, but getting more and more worn out, heads for the prized vending machine. I start pulling out my wallet and find that I only have a single dollar; the Dippin’ Dots are $4, and the machine doesn’t take credit cards. “Warning! Warning! Danger, Will Robinson!”

Cue meltdown moans. Quickly, I spring into action. “Hey, lets go see if they sell any in the gift shop and, if not, maybe we will find something even better!” So, we wander around and look at everything at least twice. C starts getting wild, a sure sign he is about to go into sensory overload. He wants one of everything, and can’t make up his mind. An aspect of his executive function issues is the inability to make decisions, thus becoming overwhelmed. I step in and pick something out for him and he’s happy but, he is still hung up on what to choose. Once E makes his pick, we go to pay. I ask the cashier about cash back, which they don’t do, and am directed to the ATM outside. At this point, I’ve spent enough money, and just want to go home but, C is headed for a full-blown meltdown over those dang Dippin’ Dots so, I check out the ATM. They charge a use fee of $3 to take out money, and my penny-pinching side shows up.

“I am not going to spend almost the same amount in fees as it is for the stupid treat; I just spent more money than I planned to at the gift shop. Stop spoiling this child and go home!”

Caleb is now quite put out. He loves his new stuffed animal, but is angry that he didn’t get everything he wanted. Granted, it sounds like I’m describing a spoiled brat or a toddler, but I’m not. I’m talking about my almost-9-year-old son who, pathologically, has no control over this behavior.

As I watch him stomp down the sidewalk, arms drooping, head down, I remind myself that he is trying his best. He is not on the ground throwing a fit. He is not yelling or hitting me. He is not banging his head on a wall or my body as I’m trying to walk. He is removing himself as best he can from a situation that pushed him too far.

On the bus back to our car, he wouldn’t sit with me and he kept sniffing in his overly-dramatic way. But, in the car he said to me in a quiet voice: “Mom, I’m sorry about this. I don’t know why I act like this and I hate it.”

Oh, gut punch. He is a good kid. He is trying his best with the tools he has. He is very aware of his actions and does not like them, yet, doesn’t know how to change or control them yet. Here’ another subtle reminder of the differences of autism– no one person is the same. My two boys: case in point. One has internal meltdowns or shuts down (I recently read a post explaining internal meltdowns here) and, the other, becomes hyperactive then melts down. I guess Forest Gump was right:

“Life is like a box of chocolates. You just never know what you’re gonna get.”

box-of-chocolates-forrest-gump

They Are Champions

Recently, I took my boys to see some of my family. It’s about half a day’s drive; not too bad but, you just never know how it will go. I packed us up: car activities, movies, tablets, snacks, and hit the road. I’m a huge fan of road trips. You get to see so much that you’d miss if flying. This wasn’t so much of a journey as a get-from-point-A-to-point-B kind of trip, although the scenery was beautiful.

This week-long vacation was a bit new for us. In the past, dad came along with us and we had stayed at my parents’ house but, this time, we would be staying with my sister, which meant new surroundings and one less parent to lean on for support.  So, I braced myself for trouble. I fretted pre-trip and worried each day as to how the next day would be. As you may know, new surroundings, new circumstances, and non-typical people all can throw a wrench in the works for our kiddos. But, it wasn’t as bad as I thought it would be. The boys got to see their Nana and Papa each day and had two aunts to play with.

Each day started early, relaxing with coffee on the patio. We visited, listened to the coo of mourning doves and enjoyed the cooler temperatures. As is typical of the high desert, by late morning it was very hot so, we spent most of our time at the pool, where there was a beautiful, shaded lounge area off to the side, along with music, snacks, drinks and laughter. The water was warmed by the sun and we were the only ones around to enjoy it. The very definition of summer fun.

Now, E had taken swim lessons a few years ago. He got quite good and loved it, until one fateful day he was practicing with a small float board that darted out from under him, and he thought he was going to drown. Though he did get back in the water after that day, he seemed to enjoy it less as his worries and fears got in the way. Mr. C never did end up with much in the way of lessons. He hated the feel of the water on his skin, he hated that it felt cold, etc. I now understand that this is part of his sensory processing disorder but, at the time, I just didn’t get it.

But, I digress. These previous experiences added up to a new set of worry for mama bear. Are they going to enjoy it? Will they have fun, or will they find something new to be afraid of? Will they be able to use life vests or floaties? Lions! Tigers! Bears! Oh, my!

Thankfully, all my worry was for nothing. The boys did amazing! E preferred to use a life vest so that he could have full use of the pool without the fear of sinking. C didn’t care if he had it on or not. By the end of the afternoon that we arrived, C had his face in the water with a snorkel and mask, swimming from one end of the pool to the other. By the end of day two he could do it without his life vest. This is a kid who was nearly eight before he could stand to get his face wet in the bath. When speaking to his aunt about how he learned to swim so well, he said, “I just watched the techniques and practiced them. I basically taught myself how to swim!”

This kid cracks me up! No humility there. And boy, is he fearless! He went from not really having lessons, to snorkeling, to trying to dive and swim under water. He even tried surfing on a boogie board!

On a few occasions, friends from the area came over so their kids could swim, and C would appear to be happily swimming by himself at one end but, we caught him slyly watching the other kids. He would see something new and then want to try it. He even asked them for pointers. Thankfully, the other kids were wonderful, and had great manners so, it went very smoothly. Social skills practice? Check!

E took a bit longer to feel comfortable in the water. In fact, it wasn’t until our last time in the pool that he braved his fear, and took the life vest off. I’m so happy that he did. He did amazingly well– his skills came back to him easily. He was even able to swim short distances under water.

On another day, we decided to play at the nearby lake. Again, local friends to the rescue. We were provided with a private beach to play at, which included a shaded cabana, giant buried trampoline, kayaks and paddle boards. Now, I personally have kayaked only once in my life but, I remember loving it. Unfortunately, I’m still in recovery mode from my back surgery in May and didn’t feel comfortable joining in the fun. I had to satisfy myself with wading into the water or lounging in the cabana with drinks. (Awe, shucks!) It seemed like a too-good-to-be-true type of place. For E though, it was. There were dragon flies, regular flies, bees and other flying things out. It didn’t really bother me but, for a kiddo with phobias (Entomophobia), they were swarming! He had a mini panic attack. Thankfully, we were allowed use of the friends’ house as well, and E was able to be inside in the cool air, away from the “horrific” bugs.

As a mom, that day was frustrating and hard for me. I wanted him to have the same experiences as everyone else but, I knew he just couldn’t. I was frustrated that I had to monitor him, and broken-hearted that he just can’t have fun like the rest of us. Having my family with us was a great support though, and they shared the responsibility so that we all could have moments of relaxation and fun. What really surprised me though, was, that despite his fears, E would, occasionally, make the trek from the house to the water and jump in a kayak or on the paddle board, and head out onto the lake. For a little while at least, he could lock those fears away and try something new.

Both boys just blew my mind. They had never been in a kayak or used a paddle board before, and yet, they were so good at them! E loved being out on the water. He’s always been drawn to water. Seashores are his favorite. He finds it soothing and peaceful, which is a wonderful thing for someone with an anxious mind. It was such a confidence boost for these kids to excel at something.

All in all, we had an amazing getaway, and I have been beaming with pride and awe at how well my boys did. They are champions! I am such a proud mama!

 

Schrödinger’s Autism

It’s already a few days into May, and I cannot believe how much time has passed since my last post. So much has happened around here that it’s been hard to keep up.

Beginning in March, we had our youngest son, C, engage in a neuropsychological evaluation. This evaluation took place over several appointments and several weeks. First, the parent(s) meet with the doctor to discuss the situation. What are the parents’ concerns? What kinds of issues are they aware of? What do they hope to gain from an evaluation? That kind of thing. There is no set limit or plan to this appointment– just whatever it takes to get the doctor and parent on the same page. My appointment with the doctor lasted 3 hours! We had a lot to discuss.

Now, maybe every doctor is different, but for us, the doctor spread the evaluation out over two 4-hour appointments, on 2 different days, and 2 different weeks. This is helpful when dealing with children because these tests are exhausting! We went into this evaluation with the following existing information regarding C, based on previous evaluations:

  • He has ADHD
  • He has ODD
  • He has Sensory Processing issues
  • He is a Toe Walker
  • He has not qualified for an autism diagnosis because he is “too social”
  • He is considered Gifted and has been previously identified as a 2E child
  • He seems to have anxiety
  • He has a brain-gut disconnection
  • We don’t have a full picture of what we were dealing with

Our first session started out pretty good. C had a good starting rapport with the doctor, and we got down to business. I was concerned that the time frame was going to be a bit long for C’s attention span and compliance but, I assumed the doctor knew what she was doing. After only 20 minutes, C has a complete meltdown. He is crying, begging to go home. Saying he can’t do this anymore. We tried lots of different things to gain compliance. Most of the time, I couldn’t even be in the room with them during testing because, while I am a comfort and support for C, I’m also an instigator, and he reacts with more outbursts I’m around. We managed, with snacks, bribes and bathroom breaks to get through several, but not all, of the planned tests. C was emotional and exhausted. This set the bar of expectations low for the next several days.

On the next evaluation day, E also came with us. C cried the entire 45-minute drive to the office and dragged his feet all the way into the building. E and I waited in the lobby, and C managed to do well through the first half of things, despite the rough start. When it was time to finish our snack break and start again, he had another meltdown. E and I sat in the lobby for quite some time, listening to C cry and feel bad about himself and be difficult for the doctor. Finally, E gets up and offers to help. E was able to help break through the emotions, and help C finish his assessment. It’s amazing how well C responds to E when in this mood.

Then came the wait (I hate waiting). We wouldn’t get the results for several weeks since the doctor needed time to review the results and form a report. This doctor also contacted the occupational therapist that we take C to to get another impression of C in daily life. We homeschool both boys, which many do not understand or agree with. Doctors are among that group, especially with the issues our boys deal with on the social scale. Due to the absence of additional outside input from say, a school teacher, it makes a diagnosis even harder to reach.

Meanwhile, we are struggling to help C get through his daily routine with as little conflict as possible. Being the mom that I am, I need to know what I’m dealing with. So, I do a lot of research and read books and scan Pinterest, all in search of some trick, tip or tool that might make the difference. I try to learn about each boy’s individual needs and what works best for those needs.

During this long waiting process, which started way before the actual evaluation (talking with the pediatrician, waiting for a referral, waiting for a call back, waiting for that first appointment), I was doing my own research. I came across an interesting article that linked me to all kinds of information on something referred to as PDA or Pathological Demand Avoidance. The bare bones definition of PDA is that it’s basically high-functioning autism with extreme anxiety and demand avoidance. Demand avoidance is a condition where the person avoids any demand placed on them to an extreme level due to their need to be in control of the situation. An article from The National Autistic Society of the UK stated:

“…those who present with this particular diagnostic profile are driven to avoid everyday demands and expectations to an extreme extent. This demand avoidant behavior is rooted in an anxiety-based need to be in control.”

This resonated with me. It seemed like this was the exact explanation of what we have been dealing with.

I dug in deeper and shared the information with the hubs. He also felt that this seemed to fit. I printed out information. I highlighted the snot out of it. I sent the information to the doctor explaining what I’d found, adding that to the evidence. I felt excited but, knowing that I’m not a doctor, I really wanted an official diagnosis. The drawback? PDA is not a recognized individual diagnosis and is almost unheard of in the United States. All the information I was finding was from the UK and, despite their very progressive recognition of and acceptance of ASD, they are fighting their own battles to get PDA recognized over there. Still, I had that definition in my back pocket. I added it to the huge binder I keep with notes and health files for C.

binder

 

Now, almost a month after the evaluation sessions, the day comes for our results. The hubs and I meet with the doctor to review and discuss. We were handed a 20-page report! The anxiety I’ve held in all this time starts to ebb. If there are this many pages, it must mean something! It means I’m not imagining things. There are pieces missing from our puzzle of a kid. Our appointment runs two hours long, just in reviewing and discussing the large report. Unfortunately, we walked away with more questions than answers, and I won’t go into the fine details here. Suffice to say, she diagnosed C with:

First off, I was thrown by the “provisionally” aspect. Does he have autism or not? Her response was that she found C very complex and, because she didn’t have information from teachers, she couldn’t be sure. He may simply have executive function disorder and anxiety or, he may have autism, which has both of those issues included. Her suggestion was that we first focus on helping his anxiety and then we will see what’s left. Once that’s more in control, we will be better able to know if he actually has autism or not.

It’s Schrödinger’s Autism. Until you open the box, he is both autistic and not autistic. The evaluation process was stressful and difficult on C but, it was worth it to have a clearer picture of his needs. For now, I’m saying, based on my first-hand knowledge of my child, that he has autism. In fact, I am convinced he has PDA, which, again, is a sub-set of high-functioning autism, with a base rooted in anxiety. I will proceed with this opinion until proven otherwise.

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