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The Importance of Self-Care

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

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

 What is Self Care?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Box of Chocolates

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

box-of-chocolates-forrest-gump

They Are Champions

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Schrödinger’s Autism

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

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

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

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

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

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

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

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

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

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

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

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

binder

 

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

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

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

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.

 

The Four-Legged Family

So much has happened in the past two months that my head is spinning. On any given day lots happen, but it seems especially hard in the past few months. I’m finding myself facing caregiver burnout despite the fact I’m taking better care of myself and making time for things that make me happy.

One of my greatest joys each day is spending time with our dogs. First, we have Jack. Jack is a Poodle-Shih Tzu mix (yes, he is a Shiht-Poo) that we like to call “our starter dog.” We adopted him, in November 2014, through an online classified ad. Much of his history and background is still unknown to us and, what we were told, had mostly been incorrect and unreliable. We weren’t sure if we could even have a dog due to history of allergies in our family, but since he had poodle in him, we felt he was a safe bet. (Poodles are largely promoted as hypoallergenic breeds, though your results may vary.)

The day we took Jack into our family was chaotic to say the least. The day prior was the memorial service for my father-in-law who had passed away from a rare but, mercifully, quick cancer. My husband had not been feeling well for most of that day, but had made every effort he could to get through it all and to be there for his mom. Around midnight however, he had to be flown to the hospital for kidney stones. I remained home until the early morning time to arrange for child care and to take the car on the first ferry so that we had a way to bring him home. While I was traveling to the hospital, I was able to arrange for friends to take our house guest to the airport and, while in the area, pick up Jack. This was no easy feat. It was at least a 7-hour round trip for those dear friends. Anyway, when Jack showed up, he instantly connected to me as Mom, and that was it– he only tolerates everyone else. He is my ever-present shadow and, alleged, protector. Not quite the family dog we imagined.

After a few years later (2016) we decided to get a puppy so that it would have a chance to bond with the boys and become used to their quirky ways. By this point, we had learned of a few different breeds without allergy issues. My husband had done the research and we decided that we wanted an English Shepard. Once the idea was there, I couldn’t let it go, and I scoured the Internet for days, looking for available puppies. Finally, I found one litter of puppies that were too cute to resist. The breeder of the puppies was in Texas, which brought on added uncertainty, since we could not meet the pups prior to purchase. However, she took good care of the pups, sent us frequent photos of the pups we were considering, and spent a lot of time talking with us, getting to know what we were looking for, and helping us choose which pup we wanted. Then, when we had chosen one of the pups (a beautiful tri-color female with freckles), she kept us updated with more photos and progress of her growth, confirming that this was the one we wanted. We paid the adoption fee and the additional shipping costs and waited the five weeks needed for the pup to be an appropriate age to leave the pack.

20160828_224821000_iOSThe day she arrived is almost a whole story of its own. We went to the cargo terminal of the airline that she was flown in on. Hubs decided to stay in the car with the boys to try to keep things calm, knowing that she’d be scared, having her very first adventure. I walked into the office and the agent checks my paperwork, confirms my identity and then hands me a plastic bag and some disposable rubber gloves saying, “You’re going to need these,” as she instructs me where to meet our pup.

They open the large cargo door and wheel her crate out on a cart. Before I can get very close, I smell her. Trying not to gag, I approach the crate and start talking sweetly to this very dirty, scared little pup. Thank goodness that I’m a mom who keeps wet wipes in the car at all times. We have a several-hour trip back home with this dog but, there is NO WAY she’s getting in our car smelling like that. Hubs instructs the kids to stay in the car, but of course they refuse to listen– they have a new puppy! He grabs the 14568207_10205542876491800_7994012053452788698_nwipes and I put on the gloves, and try my best to wipe down this adorable, squirmy, smelly little thing. When I’m satisfied, I hand her off to the hubs (who has the weakest stomach and had to move across the parking lot away from the stench (LOL, I’m sorry babe)). The kids have run back to the car to avoid the smell, and I set to work on cleaning the crate as best as I can. We had ordered and shipped a crate that would hold her as an adult (thinking to save money by buying just one crate for her, since they’re expensive) to the breeder to fly her to us in. This crate probably could have held the entire littler of puppies without a problem. So here she was, a tiny, scared little thing, being flown without sedation or company, away from the only family she’d ever known, to a new place and new people in a giant crate. She was shipped out with just a piddle pad for comfort and they gave her food and water for the trip. A good idea in concept but, bad in execution. The water spilled, the food spilled and she went potty a few times. Then, all that mixed around in the crate and marinated while she stomped and romped around in it.

Okay, so things are adequately clean, and we head to the nearest pet store, hoping to get her bathed. They don’t have self-serve bath stations, and they won’t take her because she’s not up to date completely with all her shots. Instead, I rush around and grab a bed for the crate, a few toys and some “grooming wipes” that I thought might help clean her a bit more. When all that is done, we head for home. Of course, she howled the entire way, stuck in her crate, totally miserable. Once home she got a bath and, though she finally was home, smelling good, ready for snuggles, I can’t help but think that these events provided a bit of trauma for her. She still hates those grooming wipes, crates and baths!

Our boys helped us pick the name for her. We tossed around a few ideas until we finally chose the name River. I could say it’s because she’s a working dog and loves the outdoors. I could say there is some special meaning but, honestly, the name comes from a favorite show of our family, Doctor Who. It’s a perfect fit and I cannot imagine a better name for her.

There is just something that is unique and special about River. Our initial idea with her was that maybe she’d become a good companion dog for E, to help with his autism. Maybe she’d be therapeutic for him. Turns out, she’s been therapeutic for all of us. She is a total family dog in that she has bonded with each one of us. I cannot say enough about how special this dog is. She’s grown up around our boys, so their “off” days of stimming and fighting and all the other noises and chaos in our house are normal to her and don’t bother her. She is sensitive to emotions and needs. If you’re sick, she sleeps next to you. If one of the boys is crying, she lays her head on their lap. I could go on. More recently, she has been sleeping on E’s bed and, though he still has the sleep issues that are common with autism, he sleeps much better with her there.

file4-2Lastly, we have Rory (another Doctor Who name). In October, we went to the pet store for a few supplies on a day that a local shelter was holding an adoption event. We had been tossing around the idea of another dog that could be specifically trained as a service dog; one that was on the stronger side that could be trained to provide deep pressure calming therapy. We looked at the various dogs on display and didn’t really see any that caught our eye. Most of the dogs were ones that would cause allergy issues or were too small. As we are about to leave, we saw this medium-sized, black and white dog, with sad eyes, that looked like a pit bull mix. Almost no one was paying attention to him and, with all the chaos going on and all the dogs barking and whining, he was just sitting there– calm and quiet, looking at us with those sad eyes. We asked to see him and were allowed to walk him around the store to get to know him. There was an instant connection with this guy and our family. Something about him felt like a perfect fit. We made the spur-of-the-moment decision to take him home with us.

As we completed our paperwork, we were told that he was about 4-5 months old, was considered a Shar Pei mix and didn’t have a name, only a number (we’ve since learned that, as of this writing, he’s about nine months old, was picked up as a stray in Fresno, CA in June of this year and, he’s a mix of Border Collie, Shar Pei and American Staffordshire Terrier). The poor baby had lived most of his life on the street or in shelters.

Due to the requirement to be neutered prior to adoption, we agreed to foster him for two weeks until he could have the surgery. However, if we had known what was in store, I wonder if we would have left him at the store that day.

We only had him a few days when we discovered that he had worms. Not a huge deal and easy to treat but, due to the fostering agreement, we had to drive an hour away to the shelter to pick up medication from them, rather than use our local vet. By the end of the first week, he was sick with what we assume was kennel cough. And it was bad. You know how, often times when babies are sick they have this trail of snot running from their nose to their lip? Rory was like that, but worse. Because he was sick, his surgery was postponed at least another week.

At about three weeks into fostering him, he was still sick, and River was now sick. We got a week’s worth of antibiotics for Rory, and we had to go to our vet to get medicine for River. He seemed to improve but, as soon as the medication was finished, he got even worse than before. One morning, he wouldn’t get up from his bed– he seemed to have lost the function of his legs on his left side. He couldn’t walk, stand or even potty without falling over. After making an emergency call to the shelter’s vet, we were obligated to return him to the shelter for long-term care.

My husband and a very devastated and worried Mr. E, made the long to trip with Rory to the shelter in our new no-dogs-allowed car. Hubs is thinking of the conversation he will have with the vet to make arrangements for us getting him back once he is well. However, the vet did not make an appearance, rather, she sent her teenaged daughter out with a full refund. No words exchanged except “here’s your money” and, “I’ll take him from here.” Quite the cold shoulder, leading to much frustration on our part. Rory had become part of our family and we were worried.

Over the next two weeks, hubs and I both, in vain, emailed and phoned the shelter, looking for information. We were never contacted in return until, one day, a curt text came through. Rory had just been neutered and we could formally adopt him that weekend from the shelter, if we were so inclined. Of course, once E knew that Rory was available to come home, there was no stopping the process, even if Mom and Dad had reservations about his health in general.file1-2

So, we make the journey to the shelter yet again, at the time specified, to finally adopt and bring Rory home. When we got there, two hours after the adoption event started, he was not there. We waited probably 30 minutes to do the paperwork which, honestly, seemed too long. Then we waited another 10-15 minutes for them to bring him to us. Meanwhile, several other dogs are finding forever homes and all we are able to do is just sit and observe. At least two other dogs in that office were sick with kennel cough too. Now, the shelter didn’t seem that dirty, but it was a fairly chaotic and seemed disorganized. Most of the dogs were in groups in outdoor kennels, in wet weather and, it just felt unfriendly. I’m such a bleeding heart– if I could have, I would have taken them all home!

When Rory was brought out and he saw us, he bolted straight for E, knocking him over and licking him like crazy, then dashed off to jump on and lick the rest of us. This was a dog who, despite being sick most of the short time he was with us, was overjoyed to see us! We finally got our Rory back and headed home.

After a few weeks, when the adoption agreement expired, we took him to our local vet to establish care and check up on his health. He seemed good and healthy now, putting on weight and bulking up, except that he had issues with frequent urinating in the house (even in his crate!), and excessive thirst. The vet drew blood, took various samples and, all in all, he looked healthy. One thing he did have was a huge yeast infection in one of his ears (Shar Peis are prone to this). They cleaned his ears, we were given medicines and, away we went with a follow-up scheduled in two weeks.

A few days before our scheduled appointment, we discover he still has worms. The vet decides that he needs an x-ray to help diagnose his frequent thirst/urination issues as it could be a sign of something more serious. While he is asleep for that, he is provided with another ear cleaning, medication for his ear, a booster shot that was due, and a nail trimming. The next day, the vet called me from her home as soon as she got the results. (I’m going to digress here, for a moment, and say that I love our vet! They are amazing!) Rory has three various parasites and some miscellaneous bits of wire (!!!) floating around in his intestines. Say what??? Good news though: he didn’t seem to have any crystals or stones floating around that could cause the urination issues, his kidneys and liver are working well, and there are no bladder or kidney stones, and the wire should pass naturally. Bad news: now he needs to have an ultrasound to check for anything else that wouldn’t have shown up on the x-ray and, he’s now on more medication for the parasites. (Just to digress again: if you have pet and don’t have pet insurance, get it now!)

Update: Rory got the ultrasound and is physically healthy. He is finishing up his medications for the parasites and his true personality come through more each day. He’s putting on a lot of weight and is starting to look like an adult dog his age and breed should look. He is also getting better with his potty-training and hopefully will be starting obedience classes soon.

As I look at him now, with his big stupid grins and sloppy kisses, I feel so very happy that we rescued him. He has brought a lot of joy and laughter for us humans, and has become River’s best friend. While he has some health issues now, we feel confident that he is a wonderful addition to our family and will make a great service dog when he is a bit older. It was a wild adjustment but he is one of us now and we love him so much.

Whether it’s with our pets or our family, when it seems like you can’t catch a break, we find that humor helps. So, with all of the various health issues that our family must deal with, we wryly laugh that he was meant to be with us. He fits right in!

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.

We Got This

It seems like lately our focus has been on Mr. C a lot and not so much on Mr. E. It’s funny because we had such a stretch of time where we were so focused on E and how to help him and now the tables have turned. We spend our time trying to figure out what tools we need to give to C to help him and figure out what we are dealing with.We_Got_This

Meanwhile, E has been growing and growing and growing. It’s like we looked at him and were like: “Parenting this lovely high functioning autistic boy is easier now. He is stable. We got this!”

Then introducing puberty. He’s our sweet and thoughtful kid on his good days. On his bad days, well…

houston-we-ve-got-a-problem-1

So now we have a son that we walk on egg shells around. The slightest word or even noise can send him in a spiral. Stimming has increased. Anxiety increased and anger…the anger increased. It’s like every time we try to talk to him, regardless if we are trying to instruct him, guide him or simply ask what he wants to eat mild mannered Bruce Banner turns into the HULK and “target angry!”

All hopes of a calm day or peaceful encounter go down in smoke. What are we to do? Are we going to survive this?

An article in Psychology Today states:

“Most children with autism have a terrible time with change. They like things to stay the same, as they are used to the familiarity of routine. If there are no new things, they don’t have to anticipate for any ‘attacks’ to their senses; they can anticipate what is coming next…The point is, body changes are scary for those who do not like change, but by telling them and showing them the changes that will happen can make it much easier for them.”

Ok check, we’ve had “the talk”…well not that talk but the “You’re growing into a man” talk. Part of the issue that concerns us is that he will regress in his behaviors, and being our first time parenting a “mean green tween machine” how do we know what is normal adolescent behavior changes and what is connected to his autism?

Recently I read an article on VeryWell.com discussing regression. You can read it here. It stated:

“Adolescence can be trying for children and their parents. A diagnosis on the autism spectrum compounds the journey and makes it more complex, to say the least. …on the issue of regression, there is reason for concern, but not panic…it is reasonable to conclude that a child with Asperger syndrome or High Functioning Autism can learn to cope with the trials and tribulations of puberty and adolescence. Your son will have many questions, it is important for you and his father to be tuned in to what he might be asking for.”

Ok phew, I don’t have to panic. We’ve discussed changes in a matter of fact way and he gets it. Mostly, we just have to try to help him learn to cope as he changes. We can do that.

What is interesting to me and so hard on all of us is the emotional rollercoaster he is on. He seems fine one moment and the next he is rolling on the floor yelling. He can’t put words to what he is feeling. As a person who sometimes finds too many words, it’s hard to comprehend.

Healthguide.com also had some good information. You can read it here. It says:

Aggression and Moods
Due to an increase in testosterone during puberty, it is possible that this time will show an increase in aggression. Also, mood swings and strong emotions can lead to aggression and in appropriate behaviors. It is important to focus on communicating feelings and finding appropriate outlets for increased feelings of aggression and strong emotions. For example, using a punching bag to work out excess aggressive energy or having a special spot to take a break when emotions are overwhelming can help a teen with autism have their emotional needs met without turning to maladaptive behavior.

Considerations
Since teens with autism will not always be aware of social norms that go along with puberty, it might be necessary to pay attention to bodily changes for them in order to prevent them from standing out and being ostracized. Things like wearing a bra, putting on deodorant and shaving legs are often looked forward to by typical developing peers who are anxious to grow up. Yet, teens impacted by the combination of autism and puberty might not notice that these things need to be done and will require extra guidance.”

I really like the tip to find an alternative way to get those frustrations out. Now all I have to do is figure out what might help him. Always “figuring things out.” It is also important to help them to pay attention to the changes as the article brought out. One, that is a big deal in our home, is deodorant. We’ve had him using it for a while now, but he usually forgets to put it on. Boy i-find-your-lack-of-deoderant-disturbinglet me tell you, we all notice.

So, we gently remind him that he needs to put it on. However, with the additional attitude he has now, that usually brought on a problem.

I decided I’d try another method and looked at some ideas on Pinterest about wall charts. It took me about one whole afternoon, start to finish, some poster board, free clip art images and tape/glue. I did a small chart for his bedroom using the “First, Next Then” method and an AM and PM chart for the bathroom using the same method. Pictures help make the visual connection to the action, rather than just having a bunch of tasks in a list that don’t mean much. So far, this has been a good start to helping our E find a little bit of independence and dignity with his new changes, but it isn’t a fail-safe. After having the charts two weeks, he still at times forgets to check them and forgets deodorant.

Still, it has helped. Dad has also taken time to sit and talk so things don’t come as a surprise. All in all, I think we still got this.puffer26

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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