ADHD

“ADHD is the most poorly-named affliction ever. Like ‘Hi, do you have a profound physical inability to accomplish your goals specifically because they’re your goals and also the thought of your friends not liking you makes you want to die? You may have Trouble Sitting Still Disorder.’” Premed with ADHD 

This made me chuckle. It is a confusing diagnosis for sure. It’s very similar to the autism saying: “If you’ve met one person with autism, you’ve met one person with autism.” No two people or diagnoses are alike.

The CDC defines ADHD this way:

“… one of the most common neurodevelopmental disorders of childhood. It is usually first diagnosed in childhood and often lasts into adulthood. Children with ADHD may have trouble paying attention, controlling impulsive behaviors (may act without thinking about what the result will be), or be overly active.”

It’s normal for kids to be easily distracted, restless or impulsive. That doesn’t merit an automatic diagnosis of ADHD. KidsHealth.org points out that ADHD is a medical condition with differences in brain activity and development, making it harder for these kids to sit still and so on.

Hubs and I used to be very opinionated about parenting and conditions like ADHD, feeling like we would know more and do better if we in those parents’ shoes. Maybe those parents just want to drug their kids because they are active… <sigh> We had no clue what we were talking about.

Years later, I’m a parent of two children with medical and psychological diagnoses of ADHD. Both boys struggle, but in different ways, and they are both medicated, but with different medications. Again, no two diagnoses are the same.

ADHD is separated into different categories: Impulsive, Hyperactive, Inattentive, or Combination. (Again, a great definition of these was found on KidsHealth.org) E, was first diagnosed with ADHD when he was 7, prior to his autism diagnosis. His ADHD is a combination: Inattentive/Impulsive with a little Hyperactivity. He struggles to follow multi-step directions, procrastinates, is absent-minded, and often loses track of things (Inattentive). Without his medication he is almost wild. He acts without thinking, is over-emotional in his reactions and, many times, he hits or pushes when playing and may hurt someone but, “wasn’t meaning to”. When he was younger, he was a bit of a risk taker, climbing things and unaware of dangers like being cautious of cars in a parking lot and such (Impulsive). He will also interrupt conversations, tell others how to play their video games, talks excessively, and fidgets constantly (Hyperactivity).

Now C, also diagnosed with ADHD before his autism diagnosis, also has a combination type, but it’s very different, being more Inattentive/Hyperactive with a little Impulsivity. One of the biggest issues we deal with is his constant feeling of boredom. Very few things keep his attention and he wants to be entertained all the time; he seems unable to entertain himself and this is very hard on the family (Inattentive). While he is less on the move now, he was the kid that never stopped moving (Hyperactive). He is still minimally aware of what’s going on around him and often interrupts conversations or is unsafe in parking lots and so on (Impulsive).

So, while each boy has their differences, they both deal with similar issues and have multiple comorbidities. We made the choice medicate them in order to help manage some of the side effects of their brain chemistry differences, to help them be more successful in their lives. In moments of clarity, they used to be so frustrated with themselves, and feel so down on themselves, regretting how they acted earlier, saying that they don’t know why they acted that way, and that they must be bad people. Now, with appropriate medication and therapy, though they still struggle with their issues, they are less intense and easier to deal with, not only for us as parents, but more importantly for them personally. They are not drugged-out zombies who sleep all day or do everything we say. The medication simply takes the intensity off of their ADHD, letting their true personalities shine through. They are much happier with themselves, and the family is, as a whole, too.

Before I became a parent, I had strong opinions but, over many years with many difficult choices, I now have new, more realistic and educated opinions. Choosing to medicate your children is a very tough decision for parents. You doubt yourself. You worry that about doing the right thing. You worry what others might think of your choice. Until, one day, you don’t. At some point, you realize that it doesn’t matter what you did or didn’t choose to do. It doesn’t matter what others think. All that matters is that you do what you feel is best for your own children, whom you know best. You no longer judge other parents for their choices because you realize that they are likely doing their best, just like you are for your kids. Each new day brings new challenges. You learn to think differently and keep going.

“You need to give what’s best in you a chance to grow with the right gardener, one who see that you’re a special plant, not a weed.” – Ned Hallowell

 

Defeat?

Today is beautiful. I am outside, enjoying the weather and yet, I’m fighting feelings of defeat. This morning we had our third visit with the psychologist who has recently begun working with C. We have been waiting several months to see this doctor, as is common with most of the pediatric specialists our kiddos need to see.

I know there are no quick fixes for what he is dealing with, and that this is a marathon and not a sprint, but I guess I let myself get my hopes up. I was under the impression that this new doctor would, not only be the one who would be able to help C with his behavioral issues that are connected to his gut issues, but also help with the other behavioral issues he deals that are connected to his ODD and anxiety. Unfortunately, this doctor only works with the mind/gut connection.

We had our first meeting with her last week. After filling her in on all that we were hoping to accomplish, she basically told us that she felt that we’d be better off seeing a different psychologist to focus on the ODD, anxiety and other issues before treating the gut issues. Though I’m terribly disappointed, I understand her point. If he is defiant and oppositional towards the suggested treatments, then we will be at a standstill. He must be cooperative for the therapies to work. However, she’s still willing to see us for a time and see how it goes.

For the second appointment, C met her for the first time but spent most of the one-hour session with his face buried in my lap or in a pillow on the couch, and then went out and sat in the hallway with my phone while I finished the appointment. Not really a rousing success. We did, however, come up with an initial plan.

First, C needs to wear underwear during the day and, second, practice sitting ‘properly’ three times a day. The underwear is a tough one simply due to habit. C hates being dirty in any way and yet hates bathing. We have tried having him wear regular underwear before. It becomes an issue though because he doesn’t feel the urge to go, then he leaks through the underwear into his clothing– especially when we are giving him stool softeners and laxatives. He is, understandably, hesitant to return to this situation. Despite that though, he has willingly gone along with this change. We’ve set the bathroom up with plenty of clean underwear for him and a special bin for his soiled clothing. The reward for telling us each time he notices that he needs to be cleaned up is a sticker on a chart and a reward after a certain number of stickers. For now, he is still allowed pullups at night. We are not ready to fight that battle yet.

Sitting properly means sitting up straight (rather than slouched over with his head on his knees) and using the ‘Squatty Potty’ Stool (rather than letting his feet hang). This sounds simple, and it is, in concept. But C has a hard time sitting up straight on the toilet, saying that it makes his legs hurt. With his sensory issues, this ‘hurt’ may simply be discomfort because he is not used to the position, or it could actually be pain. We don’t know and he can’t find a way to describe it other than it hurts. For now, the sitting position is our big hurdle. We have previously provided toilet seat covers and cushions to ease his discomfort, but he still won’t sit properly. We are even considering buying a new toilet seat just to see if the shape makes a difference. His anticipating that it will ‘hurt’ when he sits leads to anxiety which makes him tense; being tense is not conducive to our goal. So, between having to convince him to sit properly and his resisting, this stage may take a while to accomplish.

Meanwhile, we still don’t have definite answers to his lack of feeling urgency other than that his intestines are so stretched out that the nerves aren’t firing the proper messages, if at all. The goal of these therapies is to heal and shrink his gut back to normal, yet that won’t happen until he can have regular movements. Not being able to poop regularly causes things to back up and the gut to stretch and the cycle continues. I feel like we are in a holding pattern. We keep getting the same ineffective advice and remain in the same situation. At some point, something must change.

(I feel like I need to point out to various readers that yes, we’ve tried removing gluten from his diet. We limit sugar and dairy. We increased his fiber intake. We even tried essential oils. There are some situations that must be dealt with using modern medicine. This is one of those times.)

So, I am defeated today. I want to throw in the towel. I want to run away and not have to face these tough decisions anymore, but I won’t. I will fix myself a grownup beverage and sit in the sun on my deck. I will pretend for a short time that I’m somewhere free of worry. Then, I will step back into reality and try again. I will go to the next appointment with my head held high, knowing that we are doing everything in our power to help our child, and I will fight for something new to be tried.

More Cowbell

We’ve been very busy lately and it has been a few months since I updated everyone on what is going on with C.

Before I do, I want to share this… One of my very favorite Saturday Night Live skits that I recently rediscovered.(Here) Now that’s done, on with the updates.

We got the results back from the anorectal manometry procedure that I previously wrote about and it indicated that he does, in fact, have proper muscle function in his lower gut, but that they are not being used properly; this is likely related to his Executive Function delay. The results caused our GI doctor to recommend behavioral therapy with biofeedback which has had success in other patients but, as of right now, we are still waiting for a referral to someone that provides this service.

Hearing the word ‘behavioral’ connected to his gut issues is, yet again, hard to swallow since we’ve heard it so often over the years. However, if you look at it in the proper context, with the proper explanation (something we had not been previously given), it makes sense. It is not behavioral in the sense that he is defiant, it’s behavioral in the sense that he needs to learn how to use that part of his body properly, and behavioral in the sense that he needs to be more proactive in his health. He needs to take the vitamins and medicines we offer, eat the correct foods, go to therapy, practice what he learns, and spend time on the toilet. In theory, all these things will lead to his being able to get out of his pull-ups, wear normal underwear, and not worry about accidents.

The drawback to all of this is that I lack complete confidence in this assessment. One thing that stood out to me, during the procedure, is the final test that they performed. They are supposed to inflate the balloon until he feels it but, the doctor just zipped through the test and I don’t think C felt it at all. Which would be consistent with what he’s told us all along of not feeling the urge to go, and not feeling it when he does go.

Meanwhile, we have been seeing his psychiatrist and working with him to balance the medications used to treat C’s anxiety, depression, and ADHD. So far, we’ve found a good balance, although he still struggles with agoraphobia. Just getting him outside to play is a battle.

We have also been trying to figure out what might be causing an idiopathic low-grade fever. He has been fighting this fever for at least 6 months. He complains daily about being tired and, when he does feel good enough to do something active, it’s short lived because his legs ache or he quickly becomes tired. We have asked doctors and they all seem to agree that it not linked to the constipation. We’ve had blood tests drawn. Everything seems normal. Recently we were referred to a pediatric rheumatologist. Thankfully, she ruled out rheumatism as an issue for us to worry about.

One thing that the rheumatologist did say that we found useful and interesting was that he should be taking vitamin D daily. Where we live, there are a lot of overcast days, especially in the winter (the American Pacific Northwest and the UK have nearly identical climates). Most people in this region are vitamin D deficient. Without running a blood test, she felt confident that a daily vitamin D regimen could help his achy, tired body issues. She also felt that all his symptoms are linked together: his anxiety keeps him in a flight-or-fight state which causes constant stress. Constant stress and anxiety keep the body tense, which makes it hard to relax enough to potty. You can’t go potty, so you get stressed. It’s this cycle of stress feeding itself. Many times, a body reacts to stress with a fever. Of course, this led me to do a search for low-grade fever issues and came up with a term called Psychogenic Fever. One of the articles I found on the National Institutes of Health website described it this way:

Psychogenic fever is one of the most common psychosomatic diseases. Patients with psychogenic fever have acute or persistent body temperature above normal range in psychologically stressful situations.

Another interesting but technical medical article about Psychogenic Fever can be found here. Lastly, another article about schoolchildren developing fevers during testing times was also interesting and can be found here.

It all fits what we see in him, yet we can’t seem to find a resolution that works. We have tried bowel-specific physical therapy. We have tried medication, stool softeners, a high fiber diet, vitamins and so on. He still can’t grasp the process to defecate. Hubs and I will be meeting with a psychologist this week to see if she feels that she can help us work with his needs, and then C will meet with her a couple days later. Hopefully, she will have an idea of how to improve things for him. If she is unable to help, I have a strong feeling we will end up looking into a Cecostomy. It’s not ideal but, at this point, we are looking to provide him with any form of relief so that he has less stress and improved mental health.

Maybe once his gut is healed, he will have a fever of a different kind. A fever for more cowbell!Cowbell

The Fly

The other day we had a fly get into the house. For most, this would not be a big deal. Most people would just swat at it or ignore it until it leaves or dies on its own. No, we don’t like them in our house, but for three of us, they aren’t a big deal… until they are.

The Fly ScreamSo, we had a fly buzzing around. Now E, with his entomophobia, was not pleased with this situation. Although he has been working on this phobia with his therapist, using exposure therapy, he went straight into panic mode this time. He begged us to ‘get it,’ frantically pointing to where it was every 30 seconds. Dad grabbed the electric fly swatter that we bought, hoping it would give E a feeing of control and power over the flies. So, while Dad is trying to track this small thing, E is panic stricken and loud which then feeds into the dogs’ excitement and they start going crazy. Needless to say, the whole house was in uproar. Everything stopped until that fly was dead. E got banished to his bedroom to hide and calm down. Dad kills the fly, Ethan comes out of his room, things return to normal… until we had a second fly a few minutes later. Panic sets in again. Dogs go crazy, E and C are yelling, and there is no reasoning with anyone until the fly is gone. Eventually Dad was able to talk to E and explain that it is much harder to catch the fly when everyone is yelling and jumping around towards the fly to point it out. Each time that happened, the fly would move. It’s much more effective to sit still and track the fly with your eyes and tell Dad where it is so that he can slowly stalk it. We got the dogs outside, and E goes to his room again, only to come out later, explaining that he can’t stand not knowing what’s happening. Eventually, Dad traps the fly against a window with the curtain and has E smush it. It was a gross goopy mess on my curtains but a good experience for E in personally defeating something so scary to him.

To us, it was just a small fly. It would buzz around a bit and eventually, after a few days, die (if the dogs didn’t eat it first). To him though, this fly was a huge horrible monster bug that scared him because it was unpredictable.

The next visit to the therapist brought a new strategy. We were advised to purchase a small package of fake rubber flies. Allow E to use these flies to prank other members of the family. Then we in turn prank him and so on until he is more comfortable. We were also to just place random flies around the house – if he finds them, he gets a small reward. This may help with desensitization with incidental exposure to real flies.

So, we purchase the flies online. E is aware of this new plan and agrees with it. The day the flies arrive in the mail, Dad and I are too excited to remember that E was supposed to have control of them at first and we decide to have a bit of fun with him, subtly placing one on the table next to his water bottle. He doesn’t notice right away but, when he does, he jumps, yells, and gets angry at us. We talk it out, he feels better, and we surprise him with another fly at another time. Again, it doesn’t go great, but he seems less mad. It seems that we are on track with this new program. Later that evening, we remember that we were supposed to let E play with the flies first. Oops.

Eventually, this plan involves the use of real flies in a jar to be studied. When that becomes less scary, we’ll release it into a small room like the bathroom, and sit with him while he sits, aware that the fly is in the same room and, eventually, move that idea to the whole house. The idea is to desensitize him to the stress of surprise. Personally, I see this phase taking a long time. I’m not super excited about purposely setting flies loose in my house, but if it helps my son, I’m game.

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!”

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

 

 

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