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. 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.


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…


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 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. 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.

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.  

Last Night I Cried 

I tried not to cry as I woke up to the sounds of boys screaming at each other. 

I tried not to cry as one of them came sobbing into the bedroom with hurt feelings. 

I tried not to cry while I had breakfast and listened to and watched my sweet E stim to calm his nerves.  

I tried not to cry as I discovered that our new puppy had suddenly gone lame and could not stand on his own.  

I tried not to cry as I headed to the hospital for an x-ray on Mr. C for another bowel impaction. 

I tried not to cry as I saw the image on the computer of a bowel so packed that I’m surprised he was able to walk around normally. 

I tried not to cry as his hospitalization was confirmed and we were admitted to our room. 

I tried not to cry every time he cried because he was scared and starving from the liquid diet restrictions. 

I tried not to cry as he was sedated before having an NG tube inserted into his nose.  

I tried not to laugh as he got goofy on the sedation and started talking nonsense and being silly. 

I tried not to cry when I had to assist in holding him down and restraining him as he screamed and cried, begging them to stop putting the tube in his nose.  

I tried not to cry when we went through that fight three more times before the tube was successfully in. 

I tried not to cry when I found out that we had to return our puppy to the shelter for long term care and potentially give him up if his health is just too bad. We’re already so attached to him. 

However, when the lights were down, and C was finally asleep, I laid down on my couch-bed in a sterile room and I cried.  

I needed to be strong, to handle what was thrown our way, and get my boy through the day that seemed unending and horrible for him but, I also needed a moment for me. I needed to release some emotion and stress. 

I’m sad that my adorable C has to go through this. 

I’m sad that this is the fourth time in the hospital for this. 

I’m worried about my dogs, both at home who have adapted to the new addition, and for the one we may not get to keep. 

I’m worried about my kids and my husband. 

I miss my own bed. 

This morning however, I feel refreshed. I’m me again. Calm, cool and collected. I will get through today and have a positive outlook. Just another reminder of the need for caregiver self-care. It’s so important to do something for yourself every day. Our lives are hard. Obstacles are thrown at us all the time. We need to have our “game face” on at all times. To be ready for anything. But, every once in a while, we need a break– we need “me” time. Even if it’s just a moment to let us feel, to cry, or to just sit and stare out the window. It allows us to carry on. 

So please mommies, daddies or other care-givers out there, remember to take care of yourselves too. 

Weighted Blankets and more

A lot of changes here on the site. I’ve rebranded as Chasing Calm – Adventures with Quirky Kids and have a new look to my blog. Please be patient as I work on these changes. You may even see a few reincarnations on the blog while I work to find a look that really feels like us.

The “About” page has also been updated. Nothing earthshatteringly new, but it was a wee bit out of date. The home page is now set and the blog posts are on their own page. Let me know how it feels. I debated changing all these things, and do feel a bit out of my league, but it also feels good to get a fresh look. Sort of like how it feels good to get a pedicure but you aren’t sure if you went with the right color.

Recently I opened shop on Etsy under the name ChasingCalm. At this point, I offer a variety of weighted blankets, lap pads and eye pillows. These products help to calm kids when their senses are overloaded, and are known to help them sleep better. Everything I offer can be customized to your needs and specification, and I hope to add more products soon.

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 Straight Poop

One of the biggest challenges we’ve faced with Mister C is regular bowel movements. At 7 years old, you’d really expect the child to be fully potty trained, and he was, at one point. As a baby and toddler, he had no issues with poop, and we didn’t notice any problems. He graduated into big boy undies and everything. It was no longer something we worried about. He was trained.

Then, as he grew, bowel movements became less frequent. He’d go once every few days. We stated keeping tabs on him because we had previously dealt with chronic constipation with E. With C, when we would notice that it had been a few days since he went last, we’d slip a dose of Miralax (polyethylene glycol 3350) into what he drank, and it seemed to help keep things flowing (so to speak). Of course, Miralax and other similar medications only work if you drink plenty of fluids. Thankfully, our boys have always been big water drinkers.

At the beginning of the year, about the time we started our mega trips every other week to OT and PT, we stopped paying much attention. We’d ask if he’d gone and get the “I can’t” or “I don’t need to” type of answers. So, we’d add a bit more Miralax into his diet and increase his fluid intake and hope it helped. The problem is that, with traveling every other week, his body had a hard time keeping up with its own needs. Many people suffer from a bit of a “plug up” when they travel, so it’s easy to understand that a child with sensory issues would struggle even more.

Back in early April, after a few months of this back and forth therapy routine, I realized that C’s poo issue had completely slipped my mind, and I tried to remember when he had last actually “gone.” He had been “leaking” into his underwear for some time. How long had it been? I realized that he had not gone in weeks, possibly a month! Boy, did the guilt slam into me. This had previously been an issue and, back in August, he had to be flown to the ER because he was so blocked that he couldn’t even urinate. Fear flooded my mind as I imagined having to go through that ordeal again.

Hubby and I discussed what we to do. We decided to follow the hospital-directed protocol we had previously used with E for a “cleanout.” This cleanout consisted of large doses of Miralax and a laxative each day until he went, consistently encouraging him to drink water and scheduling regular, timed trips to the bathroom. After a few days, he was obviously not doing well– he was constantly leaking, and smelled of poo all the time, plus he wasn’t eating well, which caused him to not feel well. We couldn’t leave the house with him because we were waiting for the “big moment,” didn’t want to embarrass him since he smelled, and usually needed fresh clothes throughout the day. When this process wasn’t showing results, we tried an enema, per our pediatrician.

We did three or four over a course of a week with NOTHING to show for it! We’d been using every tool at our disposal and no rewards. So, we finally make the decision to take him to the Children’s Hospital ER. That, in itself, was not easy– an hour ferry ride plus about a two-hour drive. We could have gone to a much closer hospital but, we wanted child specialists; a place that might understand the sensory issues involved.

Once at the hospital, we spent several hours waiting. We had an amazing nurse that was very understanding and seemed to really want to help. He even went to bat for me with the doctor when we were being sent home and I wasn’t in agreement that that was the right move. Basically, the doctor said, because he could still pee, C was not an emergency situation, and there was nothing they would or could do until we tried their cleanout protocol. It was basically what we had already been doing but, with a specific laxative. I was told to go home and keep using their protocol for cleanout and come back in three days or so if there was no change. To that doctor, it did not matter that we had been trying for a week, that there was a history of blockage, or that there were sensory issues involved. Needless to say, I was not a happy mommy. C was thrilled to go home though. He was bored sitting around with nothing to do. So, we spent the next week doing the same thing but according to that hospital’s rules, with another enema, all with no results.

So, we headed back to Children’s Hospital and, thankfully, we got a different doctor who seemed inclined to be as helpful as possible. They dosed C with more laxative and waited a bit to see how things progressed. Eventually, after much waiting, they tried a special enema, and we waited some more. Now, my experience with hospitals usually involve rooms with private bathrooms. This place didn’t have that. The poor little guy had to walk down the hall in a ridiculously short hospital gown, trying to stay covered in front, me keeping it closed in back, all the while needing to potty really bad! Eventually, he was able to go some, how much was unknown though. After he finally went, they decided to get an x-ray to look for blockages. Because they had no previous scans to compare it to, it was judged that he was cleared out, with only pockets of gas remaining, and we were sent home.

In theory, now that he was cleaned out, we should be able to keep him on a schedule and I even started a “Poo Diary” as I called it. I needed to be sure that he was going regularly. We did not want this to happen again. Again, despite this kid eating normal and staying hydrated and being given medicines to keep things soft and flowing, he was not going daily, or even every other day. And, he was still leaking into his underwear.

It was around this time that we decided to sell our house and move to an area that could better serve our children’s needs. So, now, four and a half months later, we are settled in our new home, have found a wonderful pediatrician for the boys, and even have all their various therapies lined up. On our first visit with the pediatrician, we talked about C’s issues with regularity. After all this time and effort on our part, he is still having issues. His leaking was so bad that we had to switch back to pull-ups to contain the leakage and keep it from staining his pants and any furniture he sat on. He still doesn’t want to sit on the toilet, “afraid he’d miss something” or, “it takes too long.” It doesn’t matter if we sit with him or even give him the iPad to play games on. Nothing can make this kid spend time on the toilet. Part of that is connected to his ADHD and part to his ODD. The pediatrician offered yet another “cleanout protocol” for us to try. He wants us to keep up with it and, if things don’t improve, we may need to see a GI specialist.

Regardless, nothing was helping. At times, we’d send him to the bathroom to try to go and he’d have already gone in his pull-ups and not even been aware of it. He can literally sit in his own poo all day and not realize he’s gone. He tells us he can’t push it out, he never knows when he needs to go, and he doesn’t even feel it when he has gone in his pants. So, this is our new normal: tactfully telling our son that he stinks and needs to be cleaned up, cleaning him up several times a day, making us feel like we have a toddler again. Nothing seems to help, and we are planning on consulting a GI specialist to see if there may be a physiological disconnect or something else preventing him from being regular.

While we work on the investigation, I’ve started trying to incorporate a more natural lifestyle in the hopes that it’ll help: fewer chemicals, eating healthier, and so on. One of my new favorite things are essential oils. It started out with a roll-on stick that I got at a local farmers’ market before moving. It has peppermint and lavender oils and I use it to help with persistent headaches. For me, it worked just as well as taking a handful of pills. I’m sold. I promptly went out and bought some oils and a diffuser at our local drug store. I noticed that E seems a wee bit calmer when I diffuse certain oils. Interesting. Then a close friend talked to me about a specific brand of organic and pure oils. We talked back and forth about what we’ve learned and what’s been helpful. After some time and research on my part, I found that there are a lot of oil combinations that are said to help focus the mind, calm anxiety, and aid with so many of the common sensory and autism issues in our house. I have had so much fun experimenting to find combinations that help my boys. They love picking what “smells” we have for the day. My husband is less enthusiastic but has been very supportive.

So, after a while, I found that there is an oil that supports digestion. I’ve tried it, it works. Then I discovered a blend for helping kids with tummy issues. So, I got it and tried it on E one night, when his stomach ached at bed time. He calmed right down and fell asleep easily. Very interesting.

Now for something really amazing: Two nights ago, C asks me to please put those two oils on him at bed time because he’s been so miserable and embarrassed about his poo issue. So, I slathered him up with the tummy oil on his tummy and put the digestion oil on the appropriate points of his feet. The next day, C had a nice large poo. I didn’t think much of it because he has been having regular doses of Miralax, though not daily. Last night, he asked me again. He said he thinks it helped him and wants to do it again. So, he gets the oils again. Today, another large poo! I’m ecstatic. He is thrilled, and asked me to do the oils again, tonight. I am convinced that these oils are going to be the tipping point to getting him in a regular habit. Only time will tell but, I think I see the light at the end of the tunnel.

If you are interested in hearing more about how aromatherapy has been helping my family, send me a private message and I’ll be glad to talk with you.

The Sensory Hangover

This. This is a great way of describing our “sensory hangovers” that I spoke about in my previous post.

Hot Mess Mama

Too many people, too much noise, too many colors, too hot, too windy, feet hurt, weird smells, aaaggghhh! Kind of annoying to even read that, huh?

Recently, my husband and I braved our own social anxiety to take our kids to the most crowded, overwhelming Easter Egg hunt ever. There were people everywhere, parents shoving kids aside to grab a dozen eggs, and children in every direction getting separated from their families. It was hell. And the poor kids had nothing to show for it because we couldn’t push past the throng of overbearing helicopter moms for my own kids to grab a damn egg. This was strike one.

After the failure of an egg hunt, we decided to make the most of it and stay where we were, which was a popular local boardwalk. Lots of rides, lots of memories. Our kids had never been, so we decided it…

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