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

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.

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.

Hostages

What do you think of when you hear the word hostage? Maybe you picture someone being held at gunpoint in a bank robbery or home invasion. Maybe it’s something you heard about in the news. Maybe it’s just a vague concept to you. I used to think of it as a mix of all the above.

Dictionary.com defines hostage as “a person given or held as security for the fulfillment of certain conditions or terms, promises, etc., by another.”  Seems pretty straightforward. But, why am I even discussing hostages?

20170605_021014349_iOSToday is a bad day. A cold has been circulating through the house and today, for the first time in like three weeks, we all mostly felt good. Fevers are gone, congested drainage has slowed (although not totally gone, thanks to spring allergies). C is having a hard time entertaining himself as usual. He has already done the chores of his choosing (he’s not supposed to have a choice but, this is the only way to get him to do anything), and managed to eke out an hour of school on the computer. He wants ‘someone to do something with him’ and yet, he can’t commit to any option presented. He feels negatively about himself. He thinks no one wants to be with him. No one likes him. I do my best to boost his self-esteem, encourage him, and suggest activities that we could do. He, ever intent on defying any positivity, denies or even refuses to acknowledge the encouragement. He refuses to accept any suggestions. We go around and around and get nowhere. At this point, I’m wanting to agree with him that no one wants to be with him because I have nothing left to say. I am beyond frustrated. I just sit there and listen to him whine while drinking my coffee. From an outside perspective, I must look heartless. I’m not though – this conversation breaks my heart.

So, as I sit there, trying to find peace and calm, I decide that we’ve been in the house too long. The weather outside is beautiful and perfect for a walk. I change out of my house clothes, in an attempt to look presentable. E loves the idea, and runs off to get ready. The dogs are going nuts, they can sense that fun is about to happen.  But, C is not having it. He does not want to go.

temper-tantrum

He hides himself under a desk in the office, crying that he doesn’t want to go. When I try to talk to him he just moans at me. He hides his face. He pulls at his hair and cries. I try my best not to respond with the anger and frustration I feel. That makes the situation worse. I try to bribe him: we’ll just walk a short walk. He can ride his bike instead of walk. We’ll walk to the donut shop for a fresh donut. I just really want to get outside. He won’t respond. I mention that it’s something we are all doing together and we want to spend time with him. Nothing. Crickets. Well no, not really. He’s still crying, but he’s ignoring me.

So, I flop into a chair and dive into mindless iPad games for a few moments to readjust my attitude. I’m furious, but I can’t direct it at him. When he feels that he is being “yelled at” or disciplined in any way, it sends him into a spiral. In fact, often, just trying to talk to him makes matters worse so, I tend to wait him out.

beanAt this point, E steps in and tries to mediate the situation. Often, he is the only one that can get through to C in these moments. Conflict makes E uncomfortable, and he knows how anxiety makes him feel which he thinks helps him understand how to help C. Sometimes it drives me nuts that he parents his brother better than I can in those moments but, mostly, I’m very appreciative of his help. He just has this way about him that 4 out of 5 times will resolve the situation and smooth things over. He might negotiate a deal with us to make C happy, or he will do something to make him laugh. It really is amazing and I’m grateful.

About a week ago, I meet with a new psychologist that will be doing a formal mental health evaluation for Mr. C. For quite some time we have been struggling with his behavior, and are desperately trying to get to the bottom of his issues and needs. The issues may be “as simple as” anxiety (I use quotes here because I know that anxiety is not easy) but, it could also be a key piece that helps us understand his already complex puzzle. So far, he has been diagnosed as Gifted, 2E, ADHD, SPD, ODD as well as having GI issues. The frustrating thing is that what one doctor says is an issue, another disagrees with. It’s confusing and stressful. We see in C behaviors that we previously dealt with in E, yet the tools we successfully used with him don’t work for C. Our “Mr. C Toolbox” is empty. So, we keep digging.

But I digress. I meet with this new psychologist for a pre-evaluation meeting. This is standard procedure in these cases. The parent(s) meet with the doctor to talk candidly and frankly about the issues without the child overhearing and their feelings being hurt as the parent vents. As I sit there, explaining how things have gotten to a breaking point in our home, she asks me: “So, it’s basically like you are a hostage in your own home, wouldn’t you agree?”

1561Say what? I hadn’t thought of it like that. My mind was blown! I was racing through my historical knowledge of our situation and making comparisons.

“Yes! Yes, that’s exactly how it feels!”

Our conversation moved forward and we sat for 3 hours discussing everything. By far, this was the most thorough intake interview we’ve had yet.  I’m excited to see how this evaluation proceeds.532353

Since that word was mentioned, I can’t stop thinking about it. I’m a hostage in my own home, and it’s not fun. Granted, I’m not actually being held at the threat of violence but, some days, it feels like it.

Today, the chaos was calmed by E offering to play Minecraft with him and I did not get my walk. The dogs are pouting. The boys sit in the other room, calmly building houses and exploring together. Meanwhile, I sit here, held hostage by a child that has demand avoidance and cannot help himself, but makes life miserable for those around him. I’m looking for ways to break out of this situation and wondering when the next crisis will arise and what small insignificant thing will be the cause. Most of all though, I’m hoping to see a light at the end of the tunnel.

 

This Is Not the Answer You’re Looking For

Back in October, our Mr. C was hospitalized for a bowel clean out. He has chronic issues in this department, and this is not our first time in the hospital for it. You can read my post about the last time here.

When the hospital took an x-ray to determine the scope of the blockage, they discovered what could be  Spina Bifida Occulta. It sounds strange to say that we were thrilled with that finding but, in a way, we were. It answered so many questions, and seemed to solve the puzzle about his chronic issues.

We are still waiting on our follow up appointment with the GI doctor that admitted C to the hospital for treatment of the blockage but, being the impatient person that I am, I called our regular pediatrician. I needed to know more about this finding and did not want to wait. What do we do? How do we help him? I had so many questions.

While meeting with the doctor, I explained to him how I had read the radiologist’s report and it said that C had this issue but no one at the hospital mentioned it to us. Did they not view it as an issue because he had something more immediate to deal with? Does he actually have this diagnosis now? The doctor was curious about it and dug a bit deeper. Apparently, Spina Bifida Occulta is extremely common. So much so that, if there are no symptoms or signs of it causing problems, they basically ignore it. The thing is, C says he can’t feel the urge to go potty, he can’t feel it when he leaks, he can’t feel it when he actually does go potty, and he often complains of his legs being sore and tired. He has these neurological symptoms that are often caused by Spina Bifida. Doc agrees that it’s worth investigation, so he decided an MRI is needed to find out more about what is actually going on in that area of the spine.

So, last week, we got the MRI done. Mr. C was so brave and he did so well but, as a mom, I struggled. All week, people have asked how I was doing. Was I worried? I thought: “Nah, I’ve had an MRI scan and it was a breeze. We’ve been through worse things. This will be a breeze too.” Then the day of the scan came, and I changed my tune. Because of the duration of the scan, he was sedated with a light general anesthesia. It is never easy to see your child be put through any procedure but, the staff was wonderful and kept me informed along the way so that I worried less. It was only took an hour but felt like forever. Before he woke up, I was taken to the recovery room to be there for him when he woke up. Poor guy– he woke with a pounding headache and was nauseated. It took longer to pass than most, but he was a trooper for being able to deal with all that on the trip home.

We were told to wait a few days before we’d have any results from the scan. That evening though, we got a call from the pediatrician’s office. “The scans for the MRI were normal,” my husband was told by the nurse. Of course, I’m in shock. What does that even mean, “normal?” Was there nothing more? Then I was furious. The scans must be wrong. Spina Bifida must be what we are dealing with. It makes so much sense. It is the missing puzzle piece. Of course, by now, it’s after-hours on a Friday night. I could get nowhere with my wrath. That was probably a good thing so that I didn’t make a pest of myself.

Sunday afternoon, I realize I’m still too fired up and unsure about the situation, and decide to email our pediatrician instead of calling first thing Monday. This allows me to moderate my questions and give the doc a chance to answer without feeling verbally attacked by a crazy helicopter mom.

First thing in the morning, I received a very brief email from him. An apology for the confusion, and a clarification. The MRI showed that C, in fact, did NOT have Spina Bifida. The only next step he could think of was trying to work with a physical therapist to strengthen C’s pelvic floor muscles.

We’re, understandably, very disappointed but, we will be seeing what the therapist we’re already working with can do for us, based on these results. The saga continues, but for now Spina Bifida was not the answer we were looking for.

Another piece to the puzzle

Last week Mr. C was admitted to a children’s hospital for bowel impaction treatment. Any of you who know our family personally, or have read past posts, are aware this is not a new issue for our family. We have been struggling with regularity for years.  

We first started working on this issue with E. Due to sensory issues related to his autism, he had issues with constipation which lead to blockage and painful elimination. This lead to fear and withholding. With a lot of work and medication, we were able to clear these blockages and retrain his body and now he has very little issues in this department.  

Now we are facing this issue again with C. We know the drill and we have tried ‘cleanout protocols’ from various doctors, yet we are not having the same success. Unfortunately, he ended up admitted to a hospital with an NG tube feeding him medicine to make things move. This is the worst-case scenario for him so far, and as unfortunate as it is, at least he is making progress to being healthy again.  

Most of what we have learned this visit is not news. He is diagnosed with Encopresis and Functional Constipation. So, we were sent home with a follow-up visit scheduled 8 weeks out and told to medicate daily with a stool softener like Mirlax and a laxative.  

Once home, I was reviewing lab notes that were available through the doctor’s web portal and learned something new which may or may not have a huge impact on how we deal with this situation long term, but was still something interesting. The x-ray that we had done to locate and officially diagnose the “fecal impaction” also caught something else. C has Spina Bifida Occulta. 

Thankfully the mildest form of Spina Bifida and we really don’t know yet how this will evolve as C grows and we deal with his various issues but it really does help add another piece to his puzzle. This could be contributing to his elimination issues and may even be a factor in his ADHD diagnosis. I’m constantly fascinated by all the tiny things that add up to an issue. Time to study more and learn as much as I mother can and make more notes in the ever grown health binder I keep for these boys.  

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