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.

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I Love Change but I Don’t

Okay, now on to the other big thing going on in our house. We are going to remodel! We love our place, but it is just too small. Officially, we live in a one bedroom, one bath apartment over our garage. We fell into the “build the guest space/in-law suite and live there while we build the main house” trap. Now, about 8 years and two quirky kids later, we’ve run out of room.

By nature, I’m an impatient person; probably one of my bigger flaws. I hate waiting!

Sidebar: I’m cracking up as I type thinking of one of C’s favorite book by Mo Willems, Waiting Is Not Easy! If you’ve got little ones, Mo Willems is a great children’s author. My kids love all his stuff!

So, here I sit, waiting and hating it. We knew that we would, one day, reach this point. We knew we would outgrow this house. But, we love it here. We have privacy. It feels secluded, yet we’re just minutes from our small town. The house itself, sturdy and well-built by my late father-in-law, is so nice. It’s just too small. So, we have kicked around the idea of what to do for quite some time. Do we move or add on? build a main home or remodel? So many options. I love change so, right from the start, I’m all in. I scour the real estate listings. I do research. Could we rent out our house for enough to cover a second mortgage? On and on it goes. Change doesn’t come as easy to the hubs and, understandably, he wants to stay here, in the last home his dad built. It’s a special place, yes, but what about our family’s current needs? I actually found a place that I loved but, on digging deeper, I didn’t like its location. It didn’t feel like it was the right location for our family and it wasn’t private. The more I looked, the more I found that everything paled to where we are now. If only we had more room! Finally, I agree that it’s best and probably less expensive to remodel our current home.

So, we start working on plans and things begin to fall into place amazingly quickly. We have funds lined up, plans we are happy with and we start interviewing contractors. It should be exciting and “happy happy” here, and I am… but I’m not. I’m also nervous and anxious over how stressful it is going to be for the kiddos and, by extension, me.

E has growing anxiety issues lately. One new thing that has come about is a fear of strangers in the house. I never even thought about that but, he’s worried and stressed about people he doesn’t know coming into our home. It doesn’t make a difference that Mom and Dad are okay with this person or that person. He is excited about the changes but, the fear and anxiety are stronger. In trying to fix one problem, we may have unintentionally added another. This poor kid. What are we going to do?

Meanwhile, Mr. C has been getting increased attention from us because of his issues, making E jealous and needy. E is acting out more, has a shorter temper and C loves to “poke the bear!” Flash forward a few weeks and C is flat out refusing to go to school any more. He is insisting on doing school at home too. We have been fighting him with this issue since he started at the public school and it’s reached its breaking point. I can no longer do this fight each morning. This is a battle I choose to lose. My life is a constant series of battles and I concede defeat on this one.

So the papers have been signed and the change has happened. Now I live in a house that is about to be remodeled with two home-schooled quirky kids, and I have no idea what to do. Homeschooling one was hard. To add a second with different special needs is insane but, honestly, it has been so much easier than I expected. I get to stay in bed just a few minutes longer and actually drink my coffee sitting down rather than while running here and there in the mad dash to force this child or that one out the door on time.

The hardest part is when C is having his “off” days which, sadly, are happening more and more. He gets frustrated that he can’t get his words out and then he refuses to keep working. If he makes one tiny mistake, it’s all over. He has to get 100% or he’s failed. He is taking more and more of my attention both in regular home life and as a student.

We have had one session with our therapist and C. The therapist’s initial reaction is that the issue is some type of Executive Functioning issue, but which one? We don’t know. What we know is that the toe walking, the sensory issues, the emotional sensitivity, the nightly fight over what he will actually eat for dinner, and the frustration he has at not getting his thoughts out are pointing at something. We just have to follow the clues.

Time to pull out the detective hat and, as Sherlock Holmes put it: “Come, Watson, come! The game is afoot. Not a word! Into your clothes and come!”

Eye of the Tiger

Last month there was a day called: International Women’s Day. Unsure of what that even means? Don’t worry. I put trusty ol’ Wikipedia to the test (https://en.wikipedia.org/wiki/International_Women’s_Day). Here’s what it has to say:

International Women’s Day (IWD), originally called International Working Women’s Day, is celebrated on March 8 every year. In different regions the focus of the celebrations ranges from general celebration of respect, appreciation, and love towards women for their economic, political, and social achievements. Started as a Socialist political event, the holiday blended the culture of many countries, primarily in Europe, especially those in the Soviet Bloc. In some regions, the day lost its political flavor, and became simply an occasion for people to express their love for women in a way somewhat similar to a mixture of Mother’s Day and Valentine’s Day. In other regions, however, the political and human rights theme designated by the United Nations runs strong, and political and social awareness of the struggles of women worldwide are brought out and examined in a hopeful manner. Some people celebrate the day by wearing purple ribbons.

Huh. Okay. Now we know. I only bring it up because my internet music station of the day had suggested playlists featuring Women Artists of various genres. Tired of the repetitive sounds of the video games in the background, I scrolled through all the genres and made my own list that put me in my happy place. Man, there are some great works of art out there! Once I put my music on, cue the kids to start whining for “their” music list. In my mind, my inner child is screaming: “NO! Mine! Mine!” (add foot stomping). I actually say that, since they are playing in the other room, I get to pick the music at this time. There is no diplomacy.

I’m a musically-motivated person. It sounds funny but, it’s true. If I need to get stuff done, I do it better and quicker with music playing in the background that I can sing and dance to. It’s amazing how fast time goes when I’m “plugged in.”

Music helped me get through my day and get things done. It broke down the wall that was keeping my thoughts jumbled and helped me with some creative crafty projects today. Lately, I’ve been knocked down repeatedly but, each time I get back up and fight a little harder. It’s like that Sara Evans song, A Little Bit Stronger. Each day I get a little stronger. I just keep going, one step at a time.

Another song of inspiration for today is one of my kids’ favorites: Katy Perry’s Roar :

“Get ready ’cause I’ve had enough. I see it all, I see it now.
I got the eye of the tiger, a fighter, Dancing through the fire
‘Cause I am the champion, and you’re gonna hear me roar”

It’s like Apollo Creed said in Rocky III:

“If you stand toe-to-toe with this bum, he’ll kill you. It doesn’t take a man to stand there and get your head beat off! He’s just a man, Rock. So, be MORE man than him! Go get him; Eye of the Tiger!”

I’m going toe to toe with life. If I let it, it will knock me down. I have had enough. Enough sick, enough fatigue. I’m fighting back. Starting now! Eye of the Tiger!

One Day at a Time

Today is the day. The day my thoughts were freed. I’ve had so many things to say, stories to tell and yet, every time I sat down, I couldn’t put the thoughts to words. Today, they seem to be bursting forth.

Today I accomplished a new project, start to finish, in about an hour or so. We needed to bring back the dreaded “chore charts” but, in a new and exciting way so that they get used again. We also needed a way to remind our boys of the various things that they keep forgetting to do without “nagging” them.

I spent lots of time searching various blogs and, of course, Pinterest. There are so many great ideas out there but, I had limitations based on what I already have on hand in the house and the ease of creation. I finally settled on this Chore Chart Tutorial from the blog My Name is Snickerdoodle. I basically followed her instructions with some minimal tweaks of my own to suit our needs. So far, I’m very proud. It felt really good accomplishing something again.

I say “again” because, as I previously mentioned, I’ve been dealing with some health issues. It turns out that my fatigue and fever over the past two months is due to a reactivation of the Epstein-Barr virus that’s cause another bout with Mononucleosis. I first got it when I worked myself to exhaustion with 3 jobs at age 19 to prove that I could live on my own. This isn’t the first time I’ve gotten a relapse either, though the last one was milder. This time is more like the original infection. Up until yesterday, I’ve had a low fever with exhaustion. Sleep either made it worse or made no difference and yet, I would fall asleep at the drop of a hat in mid-afternoon and again once the kids went to bed at 8. Being a virus, there is no medicine to help. It just takes time and rest. HA! I’m a busy mom of two wonderful, but challenging kids. Rest is never true rest! So, I continue to stumble on, day to day, taking on one or two things and then being so exhausted that I can do no more. My poor husband has been struggling along as best he can, taking care of anything that I need help with. Primarily: the nightly dinners, laundry and straightening up around the house— basically everything. So, as a person that needs to feel like I’ve accomplished things to feel good about my day, let’s add feelings of uselessness and the blues to the mix.

If that weren’t enough, the kids have been sick too. I’m fairly confident that both of them caught a mild version of my illness which, while hard to deal with, is fantastic because they are less likely to have issues as an adult with it. E has been mostly well, but frequently has fevers flare up out of nowhere and is always exhausted despite sleeping at least 7 hours a night (a lot for him). By the way, he is no longer waking at 3 in the morning but at a more normal time of 5:30 – 6:30. (Huge sigh of relief that his sleep cycle upset was only temporary!) So, he’s tired. He’s cranky and is not able to put up with his younger brother very well. This leads to lots of disputes and we tend to spend our evenings putting out fires and trying to keep them separate from each other. C is also short tempered. He has been very tired as well but, while E shuts down and is unwilling to do much, C’s being tired still involves running circles around our kitchen island and jumping on the trampoline all the time, which irritates E. Thus, the cycle continues.

Then, last week, C was having another one of “those” days when he just couldn’t get himself together to go to school. He said he didn’t feel well. He said he couldn’t think straight. He was too tired. And on and on it went. Because of all my illness, I’m currently a push-over when it comes to not leaving the house. I know it’s bad, but I really didn’t care if he stayed home. He’d had a low fever the day before so, fine. Stay home and rest.

Halfway through the morning, he starts screaming in pain. I know that his brother didn’t do anything so, I’m trying to figure it out. It turns out his ear was hurting. Now, for a normal kiddo, yes, it hurt but, for a sensory kiddo, the pain is tenfold. He’s never had an ear infection either. I’m sure that I could have done more at home, but it was bad so, I call the doctor and get him in. With an ear infection confirmed, we are sent home with suggestions to ease the pain and some antibiotics. Mr. C sure has a set of lungs! He continued to cry for a good hour or more. Finally, the home treatments start working and the pain subsides.

I figure it’ll take a day or two but he’ll bounce back like he always does and then he’ll head back to school. No dice. He had a fever for a solid week. Throughout the week he was so congested and sick that he had to sleep in my room so that I could keep an eye on him with a humidifier going too. Often I’d have to sleep sitting up, holding him so that he’d sleep propped up and stop choking on the phlegm in his throat. Dad ended up sleeping in the guest bed almost all week.

One night, C woke up screaming. He was upset and scared but not fully awake. I go to help him and find blood everywhere. All over his face, his pillow, his jammies. Everywhere! All coming from his nose. Dad was still up and heard the commotion and came in to help. He pinches C’s nose and helps him stay sitting forward, trying to keep the blood off his face and keep it from going down his throat. I grab clean clothes and more tissues. It was C’s first bloody nose and he was freaked out. Honestly, so was I. It’s one of those moments I feel like I’ve failed as a parent because I did not keep my calm. It’s terrifying to wake up and see blood pouring out of your child’s nose in the semi dark! I could have done better, but Dad came to the rescue. Usually, I react and he just stays calm and even in most situations. We make a great team. He was my hero that night. After we got the bleeding to stop, I sat up most of the night holding C because he was so scared about what happened so, we slept fitfully. Two major firsts for him in health issues this week and Mama is worn out!

C went back to school yesterday but, only for a half day. I took him back to the doctor for a follow-up to make sure that he was getting better since we didn’t expect him to get so sick. Doc says to keep watching him but, as of yesterday, he was fever-free and seemed improved. Give the antibiotics a bit more time to work.

This morning C was having one of “those” days again. He was really fighting going to school. I know that I’m a bit of a softy but, I really wanted him out of the house today. I’m so ready for our “regular” busy life. I take his temperature to prove that he isn’t sick enough to stay home. Mistake! He has a fever again. Then I noticed that he’s covered in a rash. It’s probably just a fever rash since he had one for so long, but he said it was itchy too so, he’s been home for observation. It started on his upper chest and sides, moved to cover his trunk, then creeped up to his face and neck. So far, he’s not been complaining about the itch any more than just at first. I’m sure he’ll be fine. He’s fine, right? I guess I’m a bit neurotic when it comes to my kids’ health. Maybe it’s a reaction from having to fight for their mental health issues so much. Regardless, “Take a deep breath and take one a day at a time, Mama!”

I Hate…

Today is just one of those days that’d all parents have. A bad day. Things that always happen are happening but with more vigor. It’s driving me nuts! The boys are fighting. It’s raining and dark. The house is such a mess; I can’t keep up. I’m sick, which makes me tired and, to top it off, I stubbed my toe and cracked my nail. Oh, poor, poor pitiful me! It sounds silly but I find myself saying, “I hate this,” and, “I hate that.” I could easily walk out the door, drive away and just keep driving. I fantasize about a hotel room with a bed and a TV all to myself. Retail therapy. Beautifying therapy. Really anything and everything that would make me forget just for a little bit.

Overall, I am not an unhappy person. I have a good husband, beautiful, smart children and a small but nice home. My life is good. Except when it’s not. I have boys with special needs. Those needs consume every drop of energy and every spare moment of time. Every decision to be made must take those needs into consideration. Let’s say we want to go to dinner. Where we go depends on what they can handle. Will it be crowded? Loud? Are the colors and décor overwhelming or stressful? More importantly, is there any food these picky eaters will even consider eating? Then you have to get ready and that’s a trial in itself. Seriously, most of the time it’s just easier to stay home. Even going to the park is an ordeal. Though my boys are older, I still carry a “diaper bag:” a purse that is also a tote so that I have room for fidgets, sensory items, snacks and so on. I usually carry spare changes of clothing, snacks, water and whatever else the day demands. It’s exhausting.

Today, the weather is stormy. That usually means E has an unfocused brain and getting him to do anything is nearly impossible but, we managed. C went to school but, afterwards, he fell apart. Asking him to help his brother do the one main chore they are asked to do (empty the dishwasher) caused a major meltdown. He started with the excuse that he can’t think straight. Because of this, he thinks he should be able to skip the chore and go straight to video games. I refuse and C meets this with storming off in a huff and crying loudly with anger. When he is more calm, I go in and talk with him. He tells me that he had a “bad day” and is very tried. I can understand that but, “Sorry dude, you still have to do your chores. I’m always tired, I have bad days and I still have to do my chores.” Life is tough. Except that he is six. I don’t want him to have to learn tough life lessons yet.

It’s a constant battle of wills within myself to train him to be a hard worker and earn nice things, against wanting to hold on to that little boy, my baby, a bit longer. I tried talking to him about his day; what made it bad? but he claims he can’t remember anything. He doesn’t want to talk about it. So, I worry. Is full-time school too much for him? Too simulating? Overwhelming for him? What issues is he facing that I don’t know about?

C has calmed down now and has done his chores. He is happily playing with coding on the computer while E sits there, watching and telling him what to do. That drives me nuts too. How will C learn to do anything for himself if E is always telling him how to do it? They seem to be fine with it though, and are finally getting along.

This is just a small example of a typical situation on any given day. I’m used to it and it really doesn’t seem all that bad written down. I know others have it worse, way worse but, I still hate it. I hate the constant worry about my boys and if their needs are being properly met. I hate that I hate leaving my house with them because it’s always an ordeal or that they’re likely to have a problem and/or a meltdown. I hate feeling that most of our friends have abandoned us because we come with “baggage” that they don’t know how to deal with, don’t understand or don’t even want to try. I hate having to defend my kids’ diagnoses. I hate having to justify my emotional imbalance, fatigue and stress because my kids “seem normal”.

I hate having to fight with insurance or doctors or teachers because they don’t agree with me or they “can’t” help. They don’t live with these kids. They don’t see the meltdowns or rages. They don’t see me being hated on or even attacked by the blindness that comes with these rages and meltdowns. They see sweet, obedient kids doing what is expected of them in a controlled setting like a doctor’s office or teacher’s classroom. My kids almost shut down in those places; they live in extremes: It’s either too much one way or too much another. So, to the professionals, they seem to be well-behaved kids with no issues.

I hate that I didn’t get the neurologically-normal kids that I thought I would have, and that they won’t get the lives I dreamed up for them. They are sweet, special kids, but they are not the ones I dreamed of. This life is not the one I planned, and there are days that I can’t take it and I want to run away. I would never do it but, I do think about it and sometimes plan it.

Lastly, and most importantly, I hate having these feelings. I love my family, but no one ever dreams of having kids on the spectrum or having any other illness or disability. I have kids that I cherish and love but, at times, I dream of another life. A life with the same members of my family, but where the kids are “typical” and, while everything is similar, it’s worlds different. What kind of mom would I be? Would I be a fun-loving, outgoing mom who is always keeping my kids busy? Would I work outside the home if both my kids were in full-time school? Would I have hobbies, read more books for fun, bake or garden more? What would it be like to be an average family? One where we don’t have obsessions of the month. Maybe one where the kids resist doing their chores but you know how to handle their outburst because it’s just typical outbursts. One where you don’t second-guess your every choice and decision regarding your kids because you’re doing the same things you were raised with or that others are doing for their kids. Would our kids have lots of friends and sleepovers or would they still be happier with the quiet-at-home, less-is-more mentality?

There is so much to wonder about. Sometimes I grieve for that family, for the hopes and dreams and plans that we had. So yeah, sometimes I do “hate” this life. It’s not the one I planned on but, we are making it work and it will get better.

Why Won’t He Sleep?!?!

The past few days have been “interesting” around here. Evenings have become dreaded again, and the boys seem to be fighting more than normal. I’m not really sure what has changed. I thought maybe it was due to the full moon, but the full moon has come and gone and we’re still having issues. It could be the changing weather and the increased rain and wind that we are experiencing. It could be any number of things. All I know is that I want it to stop!

What am I talking about? Sleep. More specifically, E’s continual waking between 3 and 4 AM conflicting with our (the parents) need for more sleep! I’ve recently been dealing with some pretty heavy fatigue and been needing more sleep than the hubs, so he has been taking the brunt of the issue and now the poor guy is walking around in a sleep-deprived daze.

E has always been a difficult sleeper. As a baby, we were shocked at how little he slept. He never napped like normal newborns. I have vivid memories of dad and I taking turns sleeping on the couch, E in his swing that had a 20-minute timer and music. Every 20 minutes we’d have to turn the swing back on or E would wake up and start to cry. As he got older, if we sat in a rocking chair and rocked him to sleep, the moment he was out, we’d try to lay him down and sneak away. We’d do the commando crawl across the floor and try to sneak out. Sometimes this didn’t work and we’d have to start all over. He never napped well when he was little and, when he did, never for long. Road trips were nightmares. A little older and he was needing to sleep in our room with us. Our bed was not conducive to a thrashing child and two adults so we ended up making a pallet bed on the floor at the foot of our bed for him to sleep in. This lasted for about two years. Finally, he was ready to move back into his room and he only used the pallet bed when he’d wake from bad dreams. The night terrors were intense. He would have lucid dreams where he would scream and yell or talk to us and, yet not be awake. It was really hard to learn to communicate with someone’s subconscious.

We’ve been through nights with multiple bad dreams and waking dreams. We’ve been through the waking soon after being put to bed. We’ve been through early mornings. As he’s grown, we’ve had to go through many different methods of helping him go to sleep and stay that way.

Finally, we succeeded in a routine that worked. He’d be in bed at about 8:00 and sleep until about 7:00. Awesome. Nope, it was too good to last. At first, he started waking up between 6 and 7 in the morning and it seemed to coincide with the Daylight Saving time change. “Oh he’ll adjust,” we thought. We were wrong! He would now regularly wake before 7:00. After a time, he started waking around 5:30 in the morning. Then it was even earlier. For months now, we’ve been dealing with E waking sometime between 4 and 5 in the morning. Thankfully, he’s a really good kid and knows to let his parents sleep. He will read to himself, play with Legos or something in his room. Then he started asking to watch Netflix on our tablet. Ok sure, but not until 6 am. It’s not ideal that he’s up that early, but we’re working on it.

Unfortunately, our tactics are not working. We have the same bedtime routine as always: last snack before bed, brush teeth and so on then story time. Each boy gets one-on-one time with Mom or Dad. Usually this has fallen to Dad so that I have a few minutes to myself at the end of the day. It’s also a special time for them to have with just Dad. Now, however, helping E to sleep is taking longer and I’ve started helping with bedtime for C. Poor E takes melatonin and then Dad reads to him for almost an hour before he’s sleepy enough for him to leave. Then he wants to be checked on in three minutes. It has to be three. Sometimes it takes two or three checks before he’s finally sleeping. That being said, he seemed to be doing okay on the amount of sleep he was getting, averaging 7-8 hours per night.

Now, however, he has been waking up for the past several days between 3 and 4 AM. One time he was up at 2:30 and couldn’t go back to sleep! This is his new normal, and it’s not good. He seems more tired all the time. He often says that he doesn’t feel good, he’s grumpy and has no tolerance for C, which leads to more fighting between them. As parents, we are exhausted, and have no idea what to do for him. We’ve tried things to help him to no avail. He wants to go back to sleep and can’t. It’s so sad.

It’s really hard to be the mom and teacher for me. As the mom, I want to let him play around and “rest” all day but, as the teacher, I can’t allow that. By the time we sit down for school, his mind is shot. He can’t focus very well, and he has a harder time understanding anything new.

We have another appointment with his meds doctor at the end of the month and will be able to discuss if his medications are causing this or not. In the meantime, what am I, the teacher, to do? Do I have to wake “Mom” me up at 3:00 and start school while he’s refreshed so he can zone out when he’s mentally done? As a sleep-lover, I hate mornings. I have a hard time dragging my butt out of bed a simple half-hour earlier for exercise— how on earth am I even considering this option? I must be crazy. I’m not. I’m a desperate teacher and mother who is watching her son struggle. I will do what I must.

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Quirky kids and Bullies

I need to take a moment to talk about something that all school kids deal with. Bullies. I was a fortunate nobody when I was in school. I had friends but, I wasn’t very “popular.” I was known enough to not be “one of those kids” … You know, the ones that are labeled as weird or whatever it is that makes them stand out as different. I was a happy someone that was no one. I blended in, never got bullied and generally enjoyed school.

This is not the case with many kids. I grew up with the knowledge that kids can be cruel. I have a name that can be shortened, nicknames and so on. Believe me, even with the best of intentions, kids can and will find a way to tease you, mock you, or just harass you. On one hand, it goes with being a kid and growing up. On the other hand, it often goes too far; turning nasty and causing problems. Have kids always been this mean but it was shrugged off more? Is it different today?

Things change constantly. Entertainment choices change, technology changes, parenting advice and opinions change, likes and dislikes are constantly in flux. However, one thing that seems to be a constant right now, is bullying.

Have we, as a generation, caused the bullying to become more intense or aggressive because our children need more attention from us? It’s harder to make a living, more and more often both parents are working, electronics are always on and in our faces and our kids’ faces. Perhaps they don’t know how to ask for positive attention so they act out. It may not be positive attention but, at least, now we’re paying attention to them.

Our local school has a firm policy of No Bullying, as does just about every school, anywhere. Our school handbook states:

“‘Harassment, intimidation or bullying’ means any intentionally written message or image — including those that are electronically transmitted — verbal, or physical act, including but not limited to one shown to be motivated by race, color, religion, ancestry, national origin, gender, sexual orientation including gender expression or identity, mental or physical disability or other distinguishing characteristics, when an act:
A. Physically harms a student or damages the student’s property;
B. Has the effect of substantially interfering with a student’s education;
C. Is so severe, persistent or pervasive that it creates an intimidating or threatening educational environment; or
D. Has the effect of substantially disrupting the orderly operation of the school.”

Okay, seems basic enough. No tolerance. What gets to me is that it happens anyway. We, as a family, adhere to a strong moral code. We try to train our children to be polite and respectful. We try to instill “old fashioned values;” saying please and thank you, holding doors open for people, working for the things you want, etc. We try very hard to set positive examples so that our boys learn this.

Seems like it should be simple but it’s not. When you have a quirky kid, you have to work extra hard to make sure that they are aware of their actions. Boys will be boys, but I can honestly say my boys make me proud in this regard. They can be oblivious one day and complete gentlemen the next. It takes extra work, but I think our boys are getting it down. Repetition is key.

So, I’ve done my part but, what happens when my children go out into the world, away from me? When they go to public school? They become targets to other children who may not have been shown the same code of conduct.

Dad was bullied in school to such an extent that his parents pulled him out and home-schooled him. It took him until he was an adult to make peace with it. Now, he’s been trying to teach our boys how to respond appropriately when they get bullied. That, kids don’t just become angry and mean all on their own; they have to learn that behavior from somewhere. Maybe they should be pitied instead. Still, it’s hard to avoid the visceral reaction you feel when pushed around or hearing about that happening to someone you love.

Today, is our home day. We don’t have any appointments or classes at the school for E. It’s a calm day inside and stormy outside. A great day to “hunker down” and have a quiet day. E loves these days. The rest of the week, he has at least one hour a day scheduled at the public school. Yesterday, he had a “class” that, to be honest, I can’t figure out what it’s for. He goes into this classroom and hangs out with peers of his intelligence level that are also quirky. I call it social skills. I don’t know if it is officially called the Special Ed classroom or what but, it’s the room where kids with learning differences can go when they need a break from the cookie-cutter curriculum of the average classroom. Because of his age, he really should be with different kids but, because of his academic level, they suggested a few older kids to socialize with. It will help his skills to be the younger one, rather than the older one in these groups.

When E was in Kindergarten, he was bullied a lot. At that point, we were unsure if he was really being bullied or if he was overreacting to situations because of his sensitivities. He was also undiagnosed at that time. Turns out, he really was bullied. Many times. Mostly physically and usually when teachers were not there to see it. A tough situation for any child; worse for a sensitive, quirky kid! In fact, it haunted him. He was anxious about going to school and fought against it constantly. The anxiety of that, combined with the sensory overload he was suffering with in the classroom, was really what started us down the path to home-school.

E and I have a close relationship. We talk and, when he is ready to open up about stuff, he does it in his own time. On previous occasions this school year, in this new, special class, he has told me that one or two kids have been mean to him. They have pushed him down. They’ve teased him and said mean things about his mom(!) Basically, anything they could think of to get him upset. This is a good combination of bullying and an over-reactive child, which spurs the bullies on. What got to me today, was that yesterday, one particular boy in that classroom told E the following, “You will die when you are 17 and I am going to kill you!” (Mouth drops open and I am speechless for a time. Then I got ticked off!)

Now, I don’t know the statistics of quirky kids bullying vs. being bullied but, I do know that quirky kids tend to get picked on more. That’s the way things work. Those that are different in some way, smarter or in some other way quirky get picked on. That is not news. It even happens in the animal kingdom.

What gets me is the violence behind those words. What on earth could ever cause a preteen child to speak with such anger in his thoughts. What is that poor child dealing with? Granted, the teacher was told, and it was dealt with but, I feel unsure of how to proceed. My quirky kid now has reservations about attending that class. He has already dealt with teasing and physical bullying by being pushed down multiple times. Now he has to deal with psychological bullying. How do I respond? I want him to continue his social skills development. I want him to learn to deal with this bully so that when he is an adult he can deal with the grown-up versions. It’s a sad fact but, he’ll need those skills. At what price though? Is this class a safe environment for him? He has nightmares nightly. Is this what he’s dreaming about? Is he being tormented in person and in his sleep? I hate that my baby has to face that kind of aggression and bullying in a “No Tolerance Zone.”

I cannot make the bullies of the world stop, but I can give my boys the proper tools to face these bullies and deal with it. I’ve linked a video below that is one of my favorites for using with my kids. It has such a beautifully easy way of explaining how to deal with bullies and not resorting to the same behavior. So, from my family to yours, I hope that, if you know of someone dealing with this situation, you can make use of this great video tool. I hope you can find a way to move forward from the situation and that it stops.

Beat a Bully Without Using Your Fists

https://www.jw.org/finder?locale=en&docid=502013189&prefer=lang&srcid=share

 

What if I’m Being Bullied?

https://www.jw.org/finder?locale=en&docid=502013166&prefer=lang&srcid=share

 

SPD and Me

IMG_1376

SPD (Sensory Processing Disorder) (https://en.wikipedia.org/wiki/Sensory_processing_disorder) is something we are learning about every day in our house. E has it to some extent since it goes hand-in-hand with autism. He is sensitive to the texture of certain clothing, foods, smells and so on, however, it really is one of his lesser issues. C, on the other hand— he’s a whole other ball of wax! This kid has major sensory processing issues, in my opinion. However, it seems almost impossible to find help in dealing with it.

We always knew that, once C started school, it would make or break him, so to speak, in terms of knowing for sure which behaviors of his were learned from hanging around his older brother, and which issues were actually real. It’s a really difficult situation for us to determine because all we know is what E did at that age, and he was dealing with undiagnosed conditions.

C does attend public school which, where we live, is one classroom with about 30 kids, from 8:30 to 3:00. Yes, we are in a small community but, that seems like a lot of kids in a kindergarten classroom! During the first semester, I counted almost a month of missed days: some actual sick days, and many “sick” days. Those were days when he just couldn’t pull himself together and go. Days when I couldn’t get him out the door. He didn’t “feel good” or he was “too tired.” He frequently tells us that he “hates how long school takes.” He comes home exhausted and cranky every day.

But, once home, he is like a compressed spring that is suddenly let go, and he starts bouncing off the walls. His volume is at the upper levels, which causes E’s volume and stress to go up. It creates such a din in our tiny house, I almost have to yell myself to get their attention.

C loves to run, jump and hop so much that I’m surprised that he doesn’t vibrate with the energy. I can’t imagine this kid sitting for long periods of the day focused on learning. At home, he can’t even sit in front of a favorite show without moving. He’s pacing, jumping or, in some way, moving while watching.

He is always hungry (as boys can be) but he seems to use it as something to do when he can’t think of another way to amuse himself. He is constantly demanding to “DO” something with someone. He is unable to amuse himself most of the time. Then there is the talking; He never. Stops. Talking. Inches from your face, in your ear, or at top volume; he’s constantly talking.

Then there are the clothing issues, the food issues, and the list goes on. I’ve done my reading. I’ve used the checklists. He has SPD. Possibly more. As I’ve previously mentioned, we have been told twice now that he does not have autism. They think he is too social for that. He does have markers, but not enough or not the right ones. Okay. Great. Now what? Is it ADHD? Get the forms from the doc and fill out the parent form. Yup sure enough: ADHD with a side of ODD. However, to get an actual diagnosis, the teacher has to see issues. Now, I know most people love the kindergarten teacher. He is a great teacher and, I mean no harm but, it has been months since I handed him that form and I still have not gotten a response. “C is doing great,” is the most I get. “Fantastic! but um, can you still fill out the form, please?” Maybe he is “doing fine at school,” but he’s totally not “fine” at home.

I’ve decided that the referral process is taking too long. We need help now. So I start looking online. One of my favorite places online is Pinterest. I have fallen down the Pinterest rabbit hole so many times that I’m surprised I ever look up from my computer. I love it there. So many great ideas and fun things. My limited “me” time turns into untraceable minutes as I go from one great idea to another, and on and on it goes. Sometimes, I find just what I need. Other times, not so much.

One thing that I can find loads of information on is identifying SPD. What I cannot find is how to deal with it. Everything points to getting an occupational therapist that can diagnose SPD and work with them. Great, but what about those of us who cannot easily locate a therapist that does that? In fact, the only one in our entire county that I know of works at the school. She may not even be able to officially diagnose him either.

I love the comedian Brian Regan. This is exactly how it feels.

So I speak to this occupational therapist at the school since she is currently working with E for his needs. She tells me she will speak to C’s teacher and see what he thinks. Problem again is, if he’s not having any issues in class, then there is nothing she can do.

For a time we had an indoor trampoline in the middle of our living room so that C could bounce and jump all the time. It was really great, except that everyone was always tripping over it because we don’t really have space for it. We moved it to the play area in the garage for a time but, recently, just brought it back up.

I sound like I’m talking about a dog but, we try to run him (C, not the dog), play with him, try get his energy out somehow, but it’s not enough. We simply don’t have enough energy ourselves to keep up with him. It’s like he uses all his will power to keep it together in school and just cannot control himself any longer once he’s home. Even on the weekend: his self-control has been all used up for the week.

There are days I think about and plan to homeschool him too. I’d prefer to keep him in public school. I think it is really important that my boys have things that are just theirs. School is one of those things. C has a chance to find out who his is, apart from his brother, make different friends and have different experiences. But I wonder, is it worth it?

So, here we sit with a child that is almost beyond control on some days and we are is a loop of “I agree with you, I’d love to help, but I can’t.” What now?

I shouldn’t still… but I do.

I should be used to this by now, but I’m not.

It should not break my heart anymore, but it does.

I shouldn’t still… but I do.

Last night was another example of what we deal with all the time but, is rarely seen by the outside world.

It has been a strange week of “off” behavior for E. If he were a girl, I would wonder if it were the time of the month. Mood swings, anger out of the blue, silliness, hyperactivity, intense food likes and dislikes. I’ve mentioned before that I, personally, have been dealing with hormone imbalance issues, and I’ve always thought that E was strangely in tune with me and my moods. Maybe that’s why it was such a rough week. A bad week for me means a bad one for him. It’s like the old saying: “If mama ain’t happy, ain’t nobody happy.” (Sidebar: I hate the word ain’t!) It’s true for us, but in a totally different meaning. If something is bothering me (or even, sometimes, Dad) then E reacts in a less-than-desirable way, and everyone in the household is upset by it.

Last night, C was having some “bathroom” issues. There aren’t a lot of polite ways to talk about the “bathroom” things that we deal with in this house but, I’ll try. A few months back, C had gotten so backed up, that he was in horrible pain and couldn’t even go #1. He asked to have an ambulance called and ended up having to be flown to the hospital to be taken care of there. Now, we are dealing with months, even years, possibly, of monitoring and assessing him to make sure that he’s regular and that things don’t hurt. Last night, he needed to “go” but couldn’t. The pain got bad enough that he couldn’t relax to go #1. The stress of the parents goes through the roof. Do we have to rush him to the hospital again? Can we fix it at home?

Our baby is in distress, and so are we. Dad rushes out to the pharmacy just as they are closing, and makes it in time to buy the products we’ve been instructed that will help the situation. I stay and sit on the floor while C is moaning on the toilet. When he’s ready for a break, we get him into a bath of warm water and Epsom salts. He calls this a “relaxing bath” because he won’t have to wash himself (which he hates). He lays in the bath for a while and, between that and patience, he was able to go. Victory! We are able to deal with the situation at home. No ER visit this night.

Meanwhile, I should mention that it’s dinner time and we are trying to feed the family. E starts vacillating between being out-of-control hyperactive and panicked over his brother’s distress. He is very empathetic in some ways. Of course, he has had his share of ‘bathroom’ issues as well. E had chronic constipation from infancy all the way to age 7. He knows well how difficult this issue can be. His stress at the issue at hand has caused him to get out of control and demand attention of his own from mom and dad. Attention but, not positive attention. This makes him angry and he starts slamming doors and yelling. He likes to screech these high pitched noises that hurt the ears. He also tends to pick one person to vent his anger on. Usually it’s me.

Trying to keep the peace, Dad and I take turns helping Caleb, eating our own dinner and trying to help E stay calm. The evening progresses, C starts feeling better, things get moving and he finally is tucked in bed with Dad reading to him. E decides to try to be defiant and refuses to get ready for bed. He starts fighting, yelling at me. He slams his door only to open it and start yelling that he hates me; I’m the worst (mother). Over and over. Meanwhile, I’m sitting as still as a statue, trying not to react. This is what he wants, what he craves. This is his driving force.

I know in my head that he does not hate me. It’s his out of control mind talking. He may not even realize what he is saying at this point. But it hurts. My chest is tight and I’m trying to hold in the tears. I calmly sit there, pretending to ignore his outburst. He throws things. Yells some more. Now he’s even more upset that I “don’t care” that he hates me. Any comment I make causes a reaction so I continue to sit and just say “okay” to everything that he shouts at me.

After a long, drawn out process, Dad is able to finally to get C to sleep, despite the noise. He goes into E’s room and informs him that he will come in and read him a story once E has calmed down. It takes a while, but we hold firm. E calms enough for Dad to go in and deal with him. They talk. E apologizes. He was out of control. He didn’t mean any of it. He listens to his story, goes to sleep and peace descends once again in our home.

I knew he didn’t mean it. I knew he would feel sorry for how he acted. I’ve seen this before. I shouldn’t let it get to me, break me, make me cry but, I do. I cry for the pain or confusion or whatever else my dear sweet child is dealing with. I cry for the “normal” child we didn’t have. I cry for myself, for stress release, to lament all the feelings inside. Then I go and comfort myself with a huge bowl of dessert. The night is over and the new day will be different.

Arrival Stories

Recently my youngest turned six and I started to remember what we went through when he entered into the world. First let me go back to my oldest.

Mr. E was born 3 days past188778_1004330969071_6066651_nhis due date. Labor came on naturally and we had to time it just right to reach the hospital if we wanted to be there for the birth. Travel to the nearest hospital required a one-hour ferry ride and a good thirty minutes of combined driving. We had a midwife we were working with and as labor progressed we stayed in touch and made our plans. We were all set to take the first ferry in the morning. Knowing I might not eat for a while, my dear sweetie made me a healthy breakfast to keep me going. I managed to keep it down until we were in line waiting to take our ferry. Contractions were less than 5 minutes apart and we still have a good hour before reaching the hospital. Each contraction caused me to heave. The midwife arranged with us to meet on the ferry and do a quick exam in the restroom. Oh so glorious that exam! I still ride on that boat on occasion and every single time I have flashbacks. I waddle into the handicap stall and drop my pants and put one foot up on the toilet while midwife is poking around. Apparently, labor was further along than expected and there was a risk of the birth happening before the ferry would arrive on the other side. Not a desired event, the midwife has me walk off the ferry and wait while she heads into a small shop to find a phone. She starts calling around looking for a pilot willing to fly us over rather than use the ferry. Meanwhile the hubs had to stay with the car and the ferry workers have to pull the boat out and turn it around so he can drive back off and get me to the airport. While I’m standing there waiting for the car my bladder blessed the birth. At first wondered if my water had broken but no, I peed myself. A pilot is found, the car is off the boat and the midwife is getting her car off as well. We drive the 20 minutes to the airport. It’s dark, cold and raining. I almost refused to get into the plane after seeing it. It was older and the access required me climbing up onto the wing and then into the back. I managed to do it. The flight was uneventful and we got the hospital without any issues. I couldn’t stop heaving so I went for the drugs. Labor just about stopped. We finally had him that evening. All healthy and everything went well. All through my pregnancy I felt great. No major issues. No cravings. I kept saying that I had wished I had a story to share but then I thought OK the birth was a story!

Then came time for Mr. C to arrive. His due date was around the holidays so we wanted to be prepared in case we needed a flight off again. Turns out it was almost impossible to find someone willing to fly a laboring woman off around the holidays. Due to this, I was nervous and we decided to induce labor. It was only about three days prior to the estimated due date so it was safe. Again I had a great pregnancy. I had only about two weeks of “morning sickness” which was extreme, but then it was gone. Nothing of note. Healthy pregnancy, health baby on the way.

Induction starts, and labor hit fast. I was already partly dilated so my body was already prepared for the process. I was not prepared for the contractions to be constant. For one to start again as one tapered off. It was intense! After 8 hours start to finish we had another beautiful baby boy in our family. That’s when the “story” started. My husband kept friends and family posted on things and his words are wonderful. The following is the story from his point of view, only edited for privacy issues.

“December 31: Labor and delivery were perfect but, about 10 minutes after he was born, it was noticed that he wasn’t getting pink like he should have been. His lungs were clear and sounding good but his heart was racing at 200 beats/min and his oxygen was around 50% instead of 98% like it should have been.
It was decided to send him via helicopter to [the] Children’s Hospital where specialist could provide better care.
Brianna had to stay in the hospital to recover so, my dad and I drove [and arrived] at 1:00 am. We stayed overnight here in one of the family sleeping rooms.
C arrived around 2:30am and, this morning, the doctors told us that he has a pronounced murmur in his heart but, it’s not due to congenital heart disease or any structural defect as was initially thought. The problem is that one side of his heart is not functioning as it should. They have no ideas yet as to why and I’m not going to speculate. We expect to hear more later today.
Brianna is now on her way here with her sister. She is fine physically, though we’re all a little ragged emotionally.

This evening C is doing much better. The doctors removed his respirator this afternoon, replacing it with an oxygen tube that goes under the nose, and they removed that this evening. So, he’s breathing room air on his own now which is a huge advancement. His vital signs are in the normal range for now and it’s a relief to now hear alarms going off all the time. Many of the monitoring devices were removed this evening too and he’s being given nutrients and vitamins intravenously. We’re very happy about that because, until now, he’s never had any nourishment and he’s been very, very unhappy. Though he’s not allowed to eat anything, he’s quiet and sleeping right now, likely because he’s not so hungry. (He’s
not allowed to nurse because eating and digesting are very energy-intensive and the doctors don’t want any extra load on his heart.)

We’re still waiting for lab results on liver-function and checking for viral infections so, we’ll likely be here through the weekend.

Jan. 2: Today was a pretty good day. C was allowed to nurse today which was a relief to us all. He’s off of his blood pressure meds as well as the nutritional IV – he gets all his food from Mom now. Tomorrow, he may get transferred out of the NICU into the complex care unit. That means that he gets to sleep in a crib and we get to sleep in the room with him. We’re still going to be here through the weekend since several of the tests won’t be ready until Monday. They are also waiting on lab work from the hospital he was born in. He has gained an ounce since he was born with is wonderful. However, he’s starting to look a little jaundiced which is worrisome – they’ll evaluate that later. Also, he still has unequal blood pressure between the upper and lower parts of his body. But his toes and fingers are warmer which is a good sign.

Today C got moved out of the NICU into an isolation room. The room is still part of the NICU but it means that they feel he’s doing better. We’re under the supervision of the cardiology department now.
He’s not sick with one of the viruses they suspected would cause heart trouble. But, were in this room because they are still waiting for the rest of the infectious diseases tests to come back. He’s still jaundiced and is just on the edge of needing treatment for that. They will run tests tomorrow to see if he’s improved. We *may* be able to go home tomorrow but it is still uncertain. There are some tests that haven’t come back and may not until after we come home. I just hope that they release us in enough time to catch the last ferry at least. Once nice little perk we have now is that we can sleep in the room with C. We’re happy about that.

Jan 3: Great news. The cardiologist came in this morning and, after listening to C’s heart, told us that he could see no reason why we couldn’t go home today. His jaundice is better and no longer an issue and all the test and exams show that his heart is improving spontaneously – something that they don’t know why. Granted, we have to come back in a month for a follow-up and he need to be monitored by his pediatrician, but for all intents and purposes, he’s healthy enough to go home! This is a long way from the terrifying drive to the hospital while he rode in a helicopter.

Just an update… we’re actually not going to make it home tonight. C’s bilirubin count was 17 and its borderline for a newborn so they want to put in under photo-light treatment to help bring that number down so that his jaundice goes away. Since early this morning we’ve been told that we’ll be able to go home today, even his cardiologist said that he saw no reason to hold us. So, needless to say, we’re very disappointed. He could have gone home today but we’d have to guarantee that he could see his 1503819_10202175960681009_2650196014873508181_npediatrician tomorrow (can’t check on a Sunday) and, if his levels were high, come back here right away. Since we have to deal with ferries, we elected to stay, rather than deal with two extra 4+ hour trips.
We’ll be here one more night and, this time, we’re not going to believe that we’re going home until we start signing papers.

Jan. 4: We get to go home today! The attending cardiologist did a final check and gave us her blessing.
I signed the papers and am about to take bags to the car. Couldn’t be happier.”

I love that the hubs kept everyone in the loop and we had an amazing outpouring of love, support and help. I know many parents have a story. This was ours. Today C is a healthy happy ‘quirky kid’ full of strength and energy. What we went through was rough, and I know of those who have had it worse, but I am grateful each day that he fought through. I love my boys and despite the ‘issues’ we are facing with them; I wouldn’t trade it for anything. These boys are so special!

 

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