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.

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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.  

0 to 60 

Are we really moving forward, or are we stuck in a loop? That’s a question that runs through my mind almost daily now. We’ve been in our new location for almost 4 months and things continue to feel more like home.

The issue causing me worry is, are we doing too much too fast? Do we really need to be going 60 miles per hour so soon, or would a slower pace be better?

Before our move, we had the boys taking speech, occupational and physical therapy. It was hard to have all three therapies fit in one day for both boys and it was hard to take three days out of every other week to make them happen that way. We had homework assignments, but they seemed simple enough and we were able to get that done.

We are still doing these three therapies but now doing them each week and not all in one day. The appointments are more spaced out and things should be simpler but, for some reason, they are not. The boys seem to have more therapy homework and seem to be having a harder time coping with the added load. In addition to these sessions, Mr. C also has started vision therapy, which also has homework.

We moved and hit the ground running. We got our doctors in place, and got really good therapists. So far, they have seen things we hadn’t yet, and we are learning more about our boys’ needs. Different ideas are being tried for their sessions.

For example, our speech therapist noticed that Mr. C probably has an issue with chewing and jaw movement, not just how he uses his tongue to speak. She noticed that both boys have trouble with sensing time so she has us working on estimating how long things take. She has us using games to help the connection between brain and body. Not exactly what you picture when you talk about speech therapy, yet it is all part of the bigger picture.

C needs his vision therapy because it plays a big part of his processing issues. Both boys need physical therapy to help strengthen the core muscles of their body and gain strength which they are behind average on. They need occupational therapy to help them learn how to cope with their sensory processing issues and writing skills. All these are all important.

It’s amazing, it’s wonderful. We have been so excited to have access to all the services that we need for our kids within an easy distance. However, I now wonder if we’ve taken too much on at once.

They need these therapies. We wouldn’t have gotten the referrals if they weren’t needed, but now we are being told that it’s too much for them. We are being told that most people don’t do three or four therapies at once.

It’s overwhelming. How do we know if we’ve made the right choice? We feel like the boys need each one of them, but how do you choose which one to pause until a later date? How do you tell your child that they need to wait to learn how to see better because they are overwhelmed and need fewer activities? Or do you tell them that they have to wait to learn how to cope with things that overwhelm them?

As a parent trying to give my kids the best leg up I can, I’m choosing not to tell them that. I choose to continue therapy as it is, knowing it may be a bit much right now. Doesn’t that teach them adult skills as well? As adults, do we get a choice to “pause” this obligation or “take a break” from that situation? No. They are young and resilient. They may have challenges, but they will adjust. Part of that is dependent on me as the primary caretaker. If my attitude promotes success they will succeed.

So, while it may be challenging, we’ll continue this 60 miles per hour pace we’re currently at.

I just hope that I can handle it.

The Next Chapter

                “You can’t start the next chapter if you keep re-reading the last.”  -Unknown

It the past five months, our family has been working on the draft of our next chapter so to speak. Late last year, it became increasing clear to my husband and me that we were circling round and round in our current “chapter of life,” not making progress, and something needed to change.

I was taking the boys to their speech, occupational and physical therapy sessions three hours away, every other week. That therapy clinic was wonderful to work with. They understood that we could not possibly attend these appointments weekly so, all their staff sat as a team to come up with a schedule that worked for us. They put each boy’s three appointments together, on the same day, for a total of six appointments. They honestly cared and did their best to help us. The challenge was for us to make that work. We had to be there first thing in the morning, and we usually left about 3pm. Travel to the clinic sometimes required an overnight stay in order to make appointment times and ferry schedules work.

The boys did well in their sessions, but it took so much out of them. It would take them about a full week to recover from their three days away from home. We termed these “hangover days.” Those were days with many meltdowns and angry outbursts due to over-stimulation and heightened anxiety. On those days, it felt impossible to leave our home, even to make a quick stop at the market. What made this harder was integrating school into all this. On therapy weeks, E would go to OT at the school, the boys would meet with their teacher for their weekly check-in, then we would rush to catch a ferry for their appointments the next day, staying with family that night. We occasionally would come home the day of therapy, but that was so hard on the boys, who were worn out after three therapy sessions in one day, that we usually stayed a second night.

This left me with very few good days out of every two weeks. Good days were needed to take care of my other responsibilities. I was more than exhausted; the children were unmanageable; it could not go on.

So, after much deliberation, stress, and tears, we decided that we needed to sell our house and move to a more suitable location. This was a very painful decision. We’d been in that small community for more than 20 years, and in our home for about 9 years. My husband had grown up there. We’d planned and designed that house. Hubby’s father had built it. So many special memories. However, family comes first, and we needed to be where we had easy access to the various services that our boys needed– somewhere that could offer them more resources and a calmer routine.

Our house sold in just three weeks, and we had about a month to pack, find a new home, and a new job for my husband. On the weekend following accepting the buyer’s offer, we put our dogs in a kennel, packed up the kids, and headed off to find a home. One of the homes we saw, we loved, and made an offer on. While on our return trip home, we found out that we had lost that home in a bidding war. The real estate market in the area was so “hot” that homes were selling for about 10-15% above listing prices. Many homes were priced out of our budget. It was going to be a challenge to find something.

We needed to go back and look at more houses– the pressure was on and the clock was ticking. How were we going to do this? We knew that the kids couldn’t handle a weekly journey full of house shopping, so the hubby and I decided that the best choice was for him to go down on weekends, work with a realtor, and video conference with me at the homes so I could “look” as well. That allowed me to get a head start on packing, and we didn’t have to kennel our dogs again. We spent our evenings online together, making lists of homes that we wanted to look at. Our agent was awesome and worked really hard to find a good fit for us. One weekend, we put another offer in and, again, lost to a higher offer. While hubby drove home, I went online once again to put together the next list of homes. Stress was at the max.

The boys were acting out, reacting to the unsettled mood of the house, familiar things packed up, moving boxes everywhere, the loss of their stability and the only home they had ever known. We suspended our therapy schedule. I just didn’t have time to make that trip and pack up our home.

When hubby was home, we reviewed the list of homes, talked about others he had looked at, and we came across a home that we hadn’t seen– fresh on the market. It was the right price, the right location, and the right size. We called our agent and the next day she arranged a video tour for us. We love it and put an offer in without seeing the house physically in person. Scary! The sellers accepted our offer; even more scary! What are we doing? Are we crazy?

Hubby went down that weekend and walked through the house for the first time while the mandatory property inspection was going on. Everything was good, only a few minor issues. Finally, we had a home to move in to. Everything seemed to be working out. And it did!

The house is wonderful, and we are slowly settling in. The boys have their own bedrooms, which makes giving them space on rougher days so much easier. The house is carpeted and has regular, flat ceilings (verses our previous hardwood floors and vaulted ceilings) so the noise level is much lower and easier on everyone. Everything we need is within about a 30-minute drive. 

We already have established ourselves with a wonderful pediatrician and in the past month set up appointments to start speech, occupational and physical therapies again. We were able to get C in to an optometrist that also does vision therapy, for a second opinion. It turns out that, not only does C have Binocular Convergence Insufficiency  but, he also has double vision. The doctor said that his condition is moderate to severe, and he definitely needs vision therapy. This was an a-ha moment because we are still struggling with getting C to engage in school work. If he sees double words, double lines to write on, and so on, it’s no wonder that he hates school. So, one more therapy is added to our soon-to-be weekly schedule. Just another plus to living in our new town.

The job situation is still in flux and the hubs has been commuting back to our old town and staying with family during the week, which is hard on him and the family, and makes settling in more challenging. We still have routines to establish, things here and there to tweak, and personal touches on the house. Needless to say, these two months have flown by in chaos but, we survived and already have a good feeling about the next chapter.

Vindication

“You don’t have a right to the cards you believe you should have been dealt. You have an obligation to play the hell out of the ones you’re holding.”  – Cheryl Strayed

When your child is dealing with issues or has first been diagnosed with a condition, whether it’s a learning difference or a major illness, there is always a moment of grief. Grief that life is unfair, that this wasn’t how things were supposed to go, this wasn’t planned, you don’t deserve this hand of cards.

I’ve been through this type of grief twice now. It takes time to process how things are different now and figure out what comes next but, at some point, you have to decide to put your grownup pants on, and then take action, to play the hand you’re dealt.

Recently, I reached out to the autism center that we’d worked with before to perform another assessment of C. It had been over a year since they informed us that C had “red flags” but, he did not meet the qualifications for an autism diagnosis, mostly because he is so social. When we left that visit, the doctor handed me a list of other evaluations that she strongly recommended that we look into to facilitate additional help and services.

Over the past year, I’ve looked to the public school and our local therapist and, eventually, E’s psychologist, for help. Nothing was forthcoming, and I was tired of waiting. So, I called the autism center and I asked for help and referrals. I wasn’t sure that they could help since it had been at least a year since we were last in but, they put the referrals through that same day. That. Same. Day! I am still in awe at how helpful the nurse I spoke to was. (If by some chance you read this, Jan, thank you so much!) I was given several options of additional offices, not connected to the children’s hospital, to call, as well as direct referrals to the hospital.

The next step was figuring out the best doctors to start with, considering the distance to drive and our insurance coverage. Amazingly enough, two of the alternative locations were preferred providers on our insurance! I was in shock but, rushed to call. The good vibes kept flowing and each call resulted in an appointment that was not long off! Hurrah! I was going to keep fighting for my little man and figure this out! I was so happy and excited.

Finally, the time comes, and we make the two-plus hour trek to the various doctor appointments. The first doctor was a pediatrician who was going to evaluate C for ADHD. Even though we arrived nearly an hour early, we decided to sit in the lobby rather than in the car. I was shocked when we were taken to see the doctor early, nearly right away. She was so nice and observed C while chatting with me. Then, sends us off with the “Vanderbilt” forms. These are the standard starting place for an ADHD evaluation. The parents and the child’s teacher each fill out the form and then it is scored and reviewed by the doctor. Since C is homeschooled through a public school program he actually has an official teacher to do the form, however, she couldn’t really fill it out because her personal time with him is limited. Dad and I each filled one out. Then, being me, I look up the scoring sheet online and “score” our forms. Dad and I each filled almost identical forms, and yet, the way I read the score sheet, seemed to indicate that C did not actually qualify for the ADHD diagnosis but, we are not doctors.

Our next appointment was actually two in one. We found a therapy center that focuses on pediatric occupational, physical and other therapies. C was evaluated for occupational therapy (OT) and physical therapy (PT). In both cases, there was no question that he needed help. They even caught a potential issue with his vision and sent us to a developmental vision clinic for evaluation.

While we were there, E gets all pouty and grumpy. He thinks everything looks fun and wishes he could go there. Currently, he is only getting OT from the public school. As much progress as the school has helped him make, they tend to focus on the things that help him get through school rather than long term, overall growth. I see the value of E having additional help and arrange for a referral from our local general doctor. He was more than happy to help, but warned me it may take time due to the high number of referrals his office is already working on for other patients. But, again, I’m blown away by the help I received. The next day the paperwork was done and E had an appointment for evaluations for the next time we go to sessions for C. Everything seemed to be falling into place.

The next week I (again) make the three-day trip for therapy. (I say three days because, with the travel time we face and the hour-long ferry ride we have to make work, we have to go the night before, then have a day of therapy and then stay one more night before returning home.) So, C starts out with his very first session of PT and OT followed by a speech pathology evaluation. Meanwhile, E starts his evaluations for PT and OT. Again, it is obvious that E really could use this extra help. I’m in love with this place! Everyone is so friendly and accommodating. Due to our distance, they are working with that in mind and schedule us for every other week rather than every week, and also worked as an entire office team to work out a way for all our appointments to be on one day in order to limit our travels.

After all this is settled, we go to the vision clinic and get C evaluated. He is diagnosed with Binocular Convergence Insufficiency. Basically, when he focuses on a point in the near distance, both eyes start to focus on the point as they should, but then one eye drifts off to look behind it. He has said that his super power is to see through things. I assumed it was pretend, because people don’t see through things, however, it really seems that way to him because, with each eye looking at different points, the primary object seems to disappear. He has no clue that this this is a problem. We had no clue because he has excellent vision but, this is a developmental issue that would not have been caught by a regular eye exam. It also does much to explain his issues with focus on school work and, possibly, explain many of the reasons we think he has ADHD. With the combination of eye and brain fatigue from this issue, in conjunction with his sensory issues, it makes perfect sense that he would act out, melt down and have trouble sitting still. Again, this therapy needs weekly appointments but, due to our distance, the vision clinic will work with us every other week. Thankfully, this issue can be resolved in less than 6 months if we can get C to do the homework every day. The hard part is that it’s one more thing he has to deal with and needs help with. It guarantees our staying away from home longer. It’s also very expensive out of pocket, with limited insurance help.

All these travels and therapies are a huge deal for our boys because they both hate being away from home. It’s so difficult to weigh the situation to make the right choices. Do we push the kids out of their comfort zone more, travel more, deal with more meltdowns and “sensory hangovers” yet, get the services they obviously need or, do we make things easier on everyone and try to just continue working with the school system? At this point, we’ve decided to give the therapy a try. I say “we” because the hubs and I make these decisions together but, it’s on me to execute them. He is the breadwinner and has to go to work each day. He won’t be making these trips. He stays at home to care for the animals and home, and work to pay for these services that the kids need. I appreciate him so much, I value his contribution to our family and how I can actually be an at-home-mom for our children. However, the impact of this new routine affects me more than him. I pack and unpack, parent the children solo more now and, have to spend time away from my own comfort zone. Somehow, I need to keep it together. He still gets up and goes to work. His routine doesn’t change much. The main difference for him is that his evenings are quiet and he gets more time alone. So, we have been trying to figure out ways to make the travel and changes easier on our family, and we take things a day at a time. We also wait; wait for evaluations and diagnosis.

After a couple of weeks, I got a phone call from C’s new pediatrician regarding the results of our Vanderbilt forms. First of all, I was so surprised that the doctor, herself, personally called to talk and, second, she did it to avoid us having to come in again for something so minor. She told me that the scoring on the forms indicated a combined Hyperactive and Inattentive form of ADHD as well as ODD. We talked for a while and I filled her in on the results of the other evaluations. Something she said really struck me as fascinating: Often times, when kids deal with these kinds of issues, it’s hard to determine which is the chicken and which is the egg. Basically, it’s really hard to know if one thing is causing the other or, if they are separate issues. Regardless, we were right in our concern for him and, the next time we go in, we will focus on a treatment plan. I’m ecstatic. I mean, I am not happy that my kid has ADHD, but I’m happy that my instincts were right and I’m not just crazy! I knew he had untreated issues.

My first thought after hanging up the phone was vindication. I’m vindicated as a mother with an intuition that my son needed extra help. We are finally on the right path! Our new doctors and their services are our future.

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