Wednesday, September 20, 2017

Lutheran World Relief Quilts + Sewing Lessons

We've lived here for about 8 months now and have yet to have people occupy the house to the west of us. The couple who owned it when we moved to the area were the original owners and were now in their 90s. Because of the stairs and the maintenance needed on the house, they moved to a senior living development.

I happened to be out walking around with Ms. Gail when their estate sale was going on in March. Another of my neighbors happen to be doing the same thing so we met by chance not knowing if either of us were residents of the area or sale go-ers. One thing led to another and we were talking about how excited Ms. Gail was to start preschool school this fall but I hadn't decided where I would take her. She referred me to her church just at the bottom of hill, which was a Lutheran church similar to the preschool she and the boys attended in Missoula.

Fast forward several months and Ms. Gail is now attending (and loving!) preschool there. I dropped her off last Friday and was telling her teacher how much fun she had on her first day when she mentioned the old ladies next door just loved listening to the little kids as they quilted. Of course my ears perked up, quilting? Tell me more!

Every Wednesday ladies from the church meet just down the hall (and share a partitioned wall with the preschool room) to create quilts to donate to those in need. My heart was way excited to hear this because I've been wanting to get back to sewing/quilting again but have become so frustrated with my children at home not leaving my sewing stuff alone that it's not worth the fight right now to work on anything. Wednesday's aren't the ideal day for me to hang around after dropping Ms. Gail off at school due to my work schedule but I've decided I'm going to do my best to make it work - even if I am a zombie.

This past week I dropped Ms. Gail off and wandered down the hall to see what "Old Lady Quilting" is all about. Take a stab at the first three people I met. Linda, Betty, and Doris - my mom's name, mother-in-law's name, and then my grandma's name - ironic? I was low key hoping there was a Carol to be met as that would have been my other grandma's name. Linda toured me around and showed off the storage room filled with the blankets they made as well as the ones in progress, along with all the fabric, sheets, and batting which had been donated.

I wasn't sure what to expect going into it, but I was pleasantly surprised. Everyone had their own job. There is a lady who comes in specifically to cut up fabric that is donated. There was a lady hand sewing scraps of batting together, another set of ladies sorting through and arranging fabric scraps to make quilt tops. (Most of the ladies sew the tops together at home and then bring them in for the rest of the process.) One larger group of ladies worked on tying the quilts together and then the quilts were brought over to my table where I worked with my neighbor (who I met in the spring and then forgot about and re-met) pinning the binding on so Doris could sew it all together. Doris is the oldest one in the group, coming in at about 92 years old and is the only one who sews there at the church.
Currently they have about 70 quilts ready to be shipped out in October. Coming up in the next couple weeks, they will take all the quilts they have completed and put them on the backs of the pews for the entire congregation to see and then box them up and ship them out the following week. They send out shipments twice a year, each time sending between 60-70 quilts.
 All the little old ladies were more than welcoming. It'll take me some time to recall all their names though. By the end of the three hours, I decided it was every thing I expected it to be, not knowing what exactly I expected it to be. Honestly I really enjoyed all the chitter-chatter amongst them. "Oh I just love your jean top! Did you do the embroidery on it?" "Oh thank you! Sharon did this for me a while ago. Isn't it lovely?!" "Oh yes! It's just beautiful!" And you better believe there was a coffee break complete with pound cake right at 10:30a. Not a minute before. It was the best!

I told Ms. Gail about my little adventure next door to her classroom and she was SO SURPRISED when I told her I never went home and that I was listening to them the whole time. For whatever reason, I decided that now would be a good time to start teaching her how to sew as well.

Lesson one did not disappoint! All I had her do was "sew" on the blue line. "Oh mom! Were you saving this machine just for me? I mean I saw you sewing on your machine once and thought that was just great, but now we can have mom and daughter sewing dates!!" She was probably more excited about sewing than she was about getting a cat, which says a lot considering her love of cats.

I'm pretty sure I found myself a new babysitter! Hahaha! Wiggle-wobble wiggle-wobble... She's hooked!

Wednesday, September 13, 2017

House Updates: Fire Place is Done!

Remember when I blogged all the time? That was so long ago but now that I have several more projects done around the house, I have a *little* more free time for some leisurely typing. Honestly though, most of my free time is spent cat-napping. I am almost done with my fire place project and I couldn't be more pleased with how it turned out!
One of the selling points for this house was the fire place. Both Perry and I really wanted a fire place in our new home (as well as a master bathroom!) but it was considered an extra perk if we found one we liked with one. We scored on this place because it not only has a fire place in the living room, but also has one in the basement (and we scored a sweet master bathroom too!) and we used it to the max this past winter and spring. 

I put off painting the fire place for so long because I had no idea what color to paint it. I love all the grey shades but wasn't sure what shade to paint the fire place since I managed to pick out colors for the living room and hallways that are actually more in the brown scheme of greys. Greige I guess? And then the carpet is more of a grey-grey so I was stumped. I finally opted for the same white as the ceiling, knowing I'd have to touch it up every so often.
 My first project for the fire place was painting the front of it. I don't know why I dislike gold so much. Maybe it just clashed so much with the off white color of the fire place. All I knew was that it needed to go. I wasn't sure what kind of paint to use, so I ended up using a high temperature paint from Home Depot. If I recall correctly the only color choice was black. Luckily that's what I was after.
  Just painting that part black made the dirty off-white color of the stones more bearable. I love how it turned out. If I didn't spend so much time taping off the brick, the rest of the fire place would have been painted a lot sooner. Instead I waited several months to tackle the rest of it.
 I didn't realize how dirty looking the fire place was until I painted it white. It's not a white-white, but has the littlest hint of grey in it. Spun Wool. I'm trying to simplify the color scheme in our house so using the left over paint from the ceiling not only prevented an extra trip to the store for a ton more paint samples and agony over the color again, but it also made painting the ceiling border a breeze.
Before decorating the mantle again, I painted it black to match the front piece. I also spent an extra few minutes spray painting the log holder knowing full well it would get nice and scratched up come fall season when it's constantly being restocked with logs. Overall I'm really liking how clean and fresh it looks now that the majority of the painting is done. I still have a little trim work to do but I happy to be able to cross this project off my list. I kind of want to repaint the downstairs one now but I also kind of need to work on our master bathroom first. It's in the "I hate wallpaper removal stage" and looks terrible with half the wall paper off.

Wednesday, September 6, 2017

Cannon Beach + Haystack Rock

Hey you guuuyysss!
The last couple weeks have been a little chaotic around my house as we adjust to having a new roommate as well as school starting back up again. I'm still trying to figure out a good sleeping plan that works with the family but also allows me get enough sleep. I've been a little on edge trying to balance working at night four nights a weeks while still being present with the family. Such a juggling act!

I've been working now for about a month and it's going as good as the night shift can. It goes without say that I was relieved and excited to hear Perry had Labor Day off work because typically that would mean more sleep for me! Instead of sleeping the day away though, I brought up the idea to him about potentially spending the day at the beach. I later asked HD what he wanted to do on his day off school and he thought going to the ocean would be fun. Just like that a trip to the beach was planned for day when temperatures were supposed to reach 100* at home and a pleasant 80* on the beach.

On our first to the coast we went to Astoria and then wandered south a little to Fort Stevens State Park. Loved it! So peaceful! This time we drove southwest to Cannon Beach. Such a cute little town! I wish I had the whole day to wander the town and peek into all the little shops. In case you didn't know though, Cannon Beach is known for its landmark, Haystack Rock. Who recognizes Haystack Rock from one of my favorite movies, "The Goonies"? Hey you guuuyyyysss!
*These pictures were take by HD. He missed the entire back drop in the first set he took. In the second set, he really got into his photographer roll by waving his hand in the direction he wanted us to move. Go this way! No no too far, go back this way! Come closer! *thumbs up* It was really hard to keep my composure while watching his adorableness.*
We strolled the beach for a while and enjoyed watching the kids chase the waves. I imagine the beach is usually pretty busy in the summer, but extra busy this time with it being Labor Day. It was almost high tide when we left beach in search of food. Turns out we had strolled nearly a mile...
After much wandering, we stumbled upon a quaint little cafe to stuff our faces called the Season Cafe. They mostly served cold deli sandwiches and hot panini sandwiches but we all left full. I even stepped out of my normal "Ham + Cheese Sandwich" routine and opted for a BLT instead, since I hadn't had one in so so long. Yumm!
Immmediately when we finished up, we raced over to Bruce's Candy Kitchen to pick up some taffy before heading home. While we were there we were able to watch them spin the taffy on their machine. Fresh taffy is my favorite! I may have picked up a large bag of taffy to bring home... The boys also picked out a bag of PopRocks to eat.
I had napped for about half an hour or so on the way to the coast so by the time we were ready to leave around 2pm, I was exhausted. I stayed awake as long as possible but inevitably fell in and out of sleep on the trip home. You know how restful sleeping in a car is...

Aside from my exhaustion, it was nice to be able to get away for an afternoon and just enjoy ourselves. I do have to admit I was slightly irritated that I thought I left my phone at home. I brought my Canon Rebel but some things are easier to do with my phone, like take a video. Luckily I had something to capture our day. HD found my phone as we piled out of the car when we got home. Go figure. It probably fell of my lap during my morning snooze.

Monday, August 28, 2017

Our Sensory Processing Symptoms

During our time in Vancouver, I have learned so much more about the sensory processing struggles HD faces on a daily basis. Everyone is aware of our five senses - taste, touch, hearing, sight, and smell, but there are three more senses the rest of the world is a little less knowledgeable about - vestibular, proprioception, and interoception. When our bodies get too much or too little of a sense, our behavior seems to mirror it. In learning about HD, I've also learned quite a bit about myself too!

Let me take just a moment to catch you up to speed about those three other, less spoken about, senses. 

Our vestibular system helps us to understand what our bodies are doing when related to movement, gravity, and balance. This system makes us aware that we are laying down or sitting up, in an elevator moving up or down, and allows us to walk on, say, a log. Our proprioceptive sense allows us to know where our body parts are and how to plan our movements. We can clap our hands together with our eyes closed, and we know how much force to use when pressing keys on a keyboard, or writing on paper because of this sense. Our interoceptive system is the one that tells us we're hungry, we need to go to the bathroom, our heart is racing, etc. 

When these eight senses are working together correctly, we have an "optimum state of arousal" but when our sensory processes aren't in balance, our bodies can have a sensory overload or low arousal. HD is what the OT world considers a seeker. For HD when he becomes "unregulated" or in a heighten state of arousal, he is often looking for more proprioceptive input - this is when he can be found throwing himself on ground, jumping off the bed onto the mattress, wrestling with his brother, pushing/shoving, etc. (It's also when his listening ears turn completely off.)

Sensory processing disorders appear differently in every person. Some kids can be deemed picky eaters when they have a limited number of foods they'll eat, other kids have a rough time with loud sounds or noisy areas, and some are very particular with their clothes and how they feel on their bodies. Kids who may have over-responsive vestibular systems may cause them to not like swings, slides or merry-go-rounds or may appear clumsy, and other kids with under-responsive vestibular systems might really enjoy being tossed the air, or appear to always be on-the-go or be able to spin in circles for ever and not feel dizzy. (These don't even scratch the surface! If you want more examples, check out this list.)

Usually sensory processing disorders (SPD) are diagnosed along with either autism or ADHD. It's not normally a diagnoses in of itself, but professionals in the OT world are advocating for it to be a stand-alone diagnosis. HD doesn't have autism, and because he hasn't been diagnosed with ADHD, it's been hard to get any extra help for him. Remember his doctor? He's a boy, he'll grow out of it. He's not going to grow out of it - we're just going to teach him how to live with it in an acceptable way. Right now that means going to occupational therapy once a week for an hour. We also have a ton a of tools to use during school!

As I said earlier, HD would be considered a seeker, meaning he under-registers his senses. Using the check list above from, this is a list of the struggles HD has, often on a daily basis.

Hyposensitivity to Touch (Under-Registers)
*may be self-abusive; pinching, biting, or banging his own head (HD used to frequently hit himself in the head, laughing hysterically, over and over)
*frequently hurts other children or pets while playing
*thoroughly enjoys and seeks out messy play

Hyposensitivity to Movement
*in constant motion, can't seem to sit still
*craves fast, spinning, and/or intense movement experiences
*could spin for hours and never appear to be dizzy
*loves the fast, intense, and/or scary rides at amusement parks
always jumping on furniture, trampolines, spinning in a swivel chair, or getting into upside down positions
* is a "thrill-seeker"; dangerous at times
*always running, jumping, hopping etc. instead of walking
*likes sudden or quick movements, such as, going over a big bump in the car or on a bike

Proprioception Seeking Behaviors 
*seeks out jumping, bumping, and crashing activities
* bites or sucks on fingers and/or frequently cracks his/her knuckles
*loves to be tightly wrapped in many or weighted blankets, especially at bedtime
*enjoys bear hugs
*excessive banging on/with toys and objects
* loves "roughhousing" and tackling/wrestling games
*frequently falls on floor intentionally
*would jump on a trampoline for hours on end
*chews on pens, straws, shirt sleeves etc.
*frequently hits, bumps or pushes other children

Hyposensitivity to Sound 
*appears to "make noise for noise's sake" (This one drives me CRAZY!)
*loves excessively loud music or TV
* seems to have difficulty understanding or remembering what was said
*needs directions repeated often, or will say, "What?" frequently

Hyposensitivity to Visual Input
*has difficulty telling the difference between similar printed letters or figures; i.e., p & q, b & d, + and x, or square and rectangle
*has difficulty locating items among other items; i.e., papers on a desk, clothes in a drawer, items on a grocery shelf, or toys in a bin/toy box
*often loses his/her place while reading or doing math problems

Auditory-Language Dysfunction
*difficulty reading, especially out loud
*if not understood, has difficulty re-phrasing; may get frustrated, angry, and give up
*often talks out of turn or "off topic"
*difficulty putting ideas into words (written or verbal) (Writing his thoughts is a huge struggle at school right now. I've been wondering if he might have dysgraphia which deals with writing, unlike dyslexia deals with reading.)
*looks at others to/for reassurance before answering

While HD under-registers most of his senses, it is possible to over-register one sense and under-register another and be both hyposensitive and hypersensitive. I have learned I am very hypersensitive to sounds. Here's what I can check off on the list:
* distracted by sounds not normally noticed by others; i.e., humming of lights or refrigerators, fans, heaters, or clocks ticking (I'm sitting here listening to Perry's Grandfather clock ticking and it annoys me to no end. He wonders why I don't like him to wind it...)
* frequently asks people to be quiet; i.e., stop making noise, talking, or singing (Sorry kids, it's not you, it's me.)
* may refuse to go to movie theaters, parades, skating rinks, musical concerts etc. (Movie theatres kill me. So much sound!)
* may decide whether they like certain people by the sound of their voice (Not proud, but guilty...)

This particular sensitivity of mine makes parenting a kid who likes to make sound because he can, just a little challenging. But seriously, you should hear some of the sounds HD makes. We went to the zoo and he whipped out his monkey call, and people legit thought it was the monkey. I also have no need to carry an air horn around because HD can nail the air horn sound. Impressively annoying. I have to give him props but... We also had a couple bells show up at our house and I'm seriously considering hiding them because just one ding is too many for me. It sends me into a rage. Make it stop, make it stop right now!

What about you guys, do you have any sensory problems? It's more common than you think! 

Friday, August 4, 2017

OT in Vancouver + Zone Regulation

The first few weeks after the move were a whirlwind between unpacking and getting the kids registered for school and then having snow days on top of it all. It was chaos around here.

One thing I super love about their new school is the amount of papers sent home with them about activities in the area. They bring home information on swimming lessons, dance programs, soccer league, basketball sign-ups, day-camps, etc. It is so helpful, especially being brand new to the area and not knowing what all is available and where to go to sign them up for the extra things. One of the papers sent home was a flyer for flag football, which HD really really really wanted to do. We agreed to sign him up, but to do so, he needed a sports physical. That gave me some motivation to get him into the doctor so we could begin the process of finding another occupational therapy place.

By the end of January, HD and JP were signed up for flag football, and HD had a referral sent off for more OT. A few short weeks later, our insurance had approved a place which had an opening for OT so I jumped on it. Then came the stack of papers to fill out and questionnaires to answers. (It's seems never ending!)

As therapy was winding down in Missoula, I was given a handout on implementing a sensory diet for HD but we never discussed it in full as we had other more pressing issues to tend to. On one of the questionnaires I filled out in Vancouver, I had noted several auditory things I had been seeing with HD in the last several weeks/months. Such things included him *always* making noise, simply because he could. He loves loves loves to listen to his music loud - like I can hear his headphones blaring in the front of the car when he sits in the back. He frequently forgets what has just been said too. His OT took note and asked me at the end of his first session if he usually has a blank stare about him, like you're talking through him, to which I lit up YES! ALL THE TIME! Turns out these auditory things that I noted are just a piece of his SPD, specifically an auditory processing disorder where he is under-responsive to sounds.
HD has been enjoying playing in the big gym at OT. (I had to fight the urge to climb into one of the trapezes - they look so comfortable!) In this activity, he was not knowingly, working on perseverance, listening to directions, and following rules. She had his several Star Wars guys around the gym and he couldn't touch the floor but had to find them all. Some gave him special powers, like being able to touch the ground for three seconds at a time. He was really frustrated at the end because he couldn't find them all, but he was able to push through with some help.

Color Zones of Regulation - ThingLink
In our first few weeks at OT, we picked up where we left off when it comes to our emotions. Being able to name our emotions is huge so we've been spending a lot of time at home naming how we're currently feeling, myself included, and then giving an example of what we can do to get out of the zone we are currently in. For example, I might say, "You know, I'm feeling like I'm in the blue zone right now because I'm tired. I think I'm going to take a quick walk around the block to wake up so I can get back into the green zone." Ms. Gail has became an "emotions queen" and is quick to point out who is in what zone at what time. Usually when I ask HD what zone he's in, he would be in the yellow zone because he'd be bouncing around out of control, and just overall being reckless. When he gets into this zone, it can be quite a challenge to get him out of it, especially if we are in a public place -like the other day at the dentist. Or several weeks ago when I took the kids to have dinner at a restaurant with grandma and he couldn't sit in his seat to save his life. I literally wanted to curl up into a ball and ugly cry. 

At home we do have several tactics we use to get him back in to the green zone. I let him take out his energy on building himself a "break spot" which is a fort in a quiet spot of the house, even though it usually causes quite the mess. The dark is really calming for him. But I can't just put him in a closet and be like, calm down dude. He has to want to do it. I recently made a weighted blanket for him, and let him pick out the fabric, and he often uses it at bedtime to help calm his body. We even pull it out in the daytime when we're relaxing and watching tv. HD also loves listening to music so having him wear his mp3 player around the store helps to keep him in check.

He's been getting SO GOOD at being able to label what zone he's in, and then successfully get himself back down to the optimal green zone. I'm going to go on a long tangent and try to paint a picture of my afternoon for you. Last month I took the kids to the library, by myself and it's not something I particularly enjoy doing but we had some books that were due that day so we had to suck it up and go after school. Honestly just getting from the parking lot to the entrance is a struggle for me. With all of them. We can't seem to walk. EVER. We go over expectations (which was recommended by HD's OT) before we get out of the car - typical things like, we need to use our walking feet and quiet voices, stay together, etc. I'm not asking the world of them. But out of the car and onto the sidewalk we go, and the foot race begins. Before we're even half way there, all three have ran ahead and I'm speed walking behind with a stack of books.

When I catch up to them, they are in the revolving door running it around, while people are attempting to enter and exit it. Once they've all cleared the circular door, they make a beeline to the second floor where the kids book are, until I whisper-shout at them to come back down and return their books. Now they're arguing over who gets to put what books in the slot. With enough patience, we make it to the second floor and head over to the chapter book section to find HD and JP a few new books to read. I've already lost Ms. Gail. Whatever. HD now wanders off (no, he probably ran off after I told him to settle down) as I'm helping JP to locate his Magic Tree House books. Found Ms. Gail pulling chapter books off the shelves and struggling to put them back. Lost JP while helping her, all the while keeping my eyes peeled for the third kid who hasn't been spotted for 10 minutes. Let's wander over to the story book section and hopefully find HD and a few cat books for Ms. Gail. Found the cat books, found JP again, and I can hear Ms. Gail now a few rows down exclaiming about the princess book she found. Oh and look who we have here...HD wanders over to us, like he hasn't been lost for the last fifteen minutes. "Oh I was just playing on the computers over there." You know, with the headphones cranked up, completely zoning in on "You said to go calm down..." Ideas before actions dude. Tell me where you're going. Now JP has wandered off again, but they seem to have a sixth sense and know when mom is leaving so all three unite with me as I'm checking out books, just in time to argue over who gets to place the books on the scanner and who's typing in the code... 

We've been at the library for all of twenty minutes and it's not time to go home yet so I reluctantly take them to a park downtown that we hadn't explored yet. I'm already on edge over all the running at the library and the whining, but the weather is soo nice out so I suck it up and pay $2 for parking and we (the kids) sprint to the park. I sat on the bench and watched them play for a while and could see HD getting back into the yellow zone. He yellow zoned at the library, but used the computer to help him calm down get back to the green zone. Since we're at the park, I don't so much care what he does, as long as he's nice to the other kids around him, and doesn't start throwing sand around. He carried on about his ways as I pushed Ms. Gail in the swing and kept eyes on JP. Out of nowhere, I watched HD stop playng and start wandering off like a zombie so I took Ms. Gail out of the swing and had her go play while I followed HD, as some distance behind. By the time I caught up to him, he had got himself cozy in a patch of grass that was shaded by several trees. I joined him on the ground and we looked up at the trees and the clouds together for a few minutes. "What are you doing over here?" "Oh I just needed a little break." And now I'm trying not to cry. Just when I'm really starting to wonder if OT is even helping him, he pulls this number on me and he's back in green zone playing nicely. (I'm ending my story there, before I get worked up again thinking about how I thought I lost JP when tending to HD. The struggle is real.)

OT is paying off. We might go broke trying to pay for it, but it's working. My wild child is starting to self regulate that my dear friends is priceless! I'm going to go get a tissue now. My baby is growing up!

Monday, July 31, 2017

A Neuro Exam Provides Explanations

As our time in Missoula was coming to an end, we were able to squeeze HD in for a neurological evaluation, as recommended by his OT, so we could have a better picture of what problems HD was facing. A year ago I was presented with that opportunity and I passed on it, but this time around, though I was still hesitant, I proceeded with the process. More forms and more questionnaires. It seemed endless.

His neuro exam took two weeks to do. The first week was a parent plus child meeting. More questions - how does he sleep? Talk to me about school. Tell me about home. During the duration of our meeting, she was observing him, often asking him questions too. I think it's also notable that having eye contact is a huge struggle for him, and he clearly showed that during his observation. (At home when he's re-telling stories, or being spoken to, he cannot keep eye contact. At all.) The following week was a series of "games" for HD to complete. The session took about three hours to complete so it was something where I dropped him off, went to work, and picked him up later. The following week, his neuro doctor went over the results with just myself present.

I should have taped the audio of our discussion. I'm kicking myself for not. It was clear to the doctor that HD does have Executive Function delays. To sum it up, he recommended to continue with OT because we are seeing significant gains with his emotional regulation. He also confirmed that while he does present a lot of symptoms consistent with ADHD, he doesn't feel there are enough to say, yes, he does have it. (That will continue to be monitored though.) A lot of what he said was spot on though. While we would have the option for trying medications, we both felt we should try modifying his diet first. (That's a topic for its own post!)

His doctor explained to me how HD's brain was processing memories and it completely makes sense. Think of your brain as a file cabinet. Some people are able to sort through their memories and file them accordingly - like by topic for instance - so when it comes time to recall them, they are easily found. HD on the other hand, is not really able to do that yet. Instead, everything is stuffed at the front of the cabinet. Recalling things that just happened are easy because they can easily be found at front, after maybe moving a few pieces of paper. Things that happened a while ago are harder to recall because he's digging through a random "stack of papers" to find it. It was very obvious when that theory was applied to his everyday life. Take math for example. They will work for weeks on end on a particular way to, say, add numbers and he finally understands it. But then weeks later when it's time to apply it, he's completely stumped on how to get the problem done. As a parent, helping him with homework is beyond frustrating because I know he knows how to do it.

Sleep is another hard topic too. As I mentioned before, we have struggled with bedtime for YEARS. After I was done fighting naps to happen, bed time was at 7:00pm. By the time 7pm rolled around, JP was ready and Ms. Gail just fell into that routine too. HD was ready for bed at that time too, but he struggled with falling asleep. When he was finally asleep, he would sleep for a good 11 hours. In fact we had a 7:00 bedtime up until we moved. HD needed that extra hour or so to get his body ready for sleep. It didn't matter what time bedtime was, it always took an extra hour, at least, to get him calmed down enough for sleep. Because of that, his neurologist recommended we try giving him a little bit of melatonin about half an hour before bedtime. BEDTIME WAS A BREEZE for the rest of the time we were in Missoula. Five minutes - ten minutes and he was OUT. Did I mention he was often sharing a room with JP + Ms. Gail + me? I wanted to shout in excitement! Bedtime overall has been much better in the last several months, even though I stopped giving him melatonin on a regular basis. Now I only use it when I can tell bedtime is going to be rough. Sometimes he'll even ask for it after trying to sleep for hour and is still awake.

Towards the end of our meeting, we touched on his social life. He's never really had a group of friends to play with - he usually just plays with everyone. In our discussion, and those vent sessions with Robin, it was made clear that he doesn't have the skill set yet to be able to build and maintain relationships. Often times on the playground, he'll play with kids but isn't able to pick up on their social cues that they've moved on to play something else. He's left playing by himself and he doesn't realize it.

Both HD and I were sad to have to move just as we were becoming accustomed to our new schedules and the changes we had implemented into our lives. I was nervous to start over again. Building trust is huge for OT's and their patients and it did take HD a little while to build that trust in Missoula, so to start over again was going to require a lot from HD. Moving and starting over can be really hard on kids, but I think overall he's adjusted as well as expected.

Thursday, June 29, 2017

HD: The Start of Our OT Journey

If you look at HD and watch him for a while he looks like a normal kid. That's because he is a normal kid - his brain just processes things differently than a typical kid's brain. He is so so so smart too but he often can't show it on paper. Ultimately I want him to have friends and I don't want him to struggle with school. But reality is often not what we want it to be. When it was first suggested that HD could benefit from a little bit of occupational therapy, I didn't even know what occupational therapy meant. What do they even do at occupational therapy and how could he benefit from it? I'm not even close to the right person to answer those questions, so I'll just give you my view of it.

What is occupational therapy?

The best way it's been described to me, it was posed as a question. "What matters to you?" is the question being asked by therapists, not "What's the matter with you?" In our case, engaging in good social behavior (you know, stop pushing and shoving when you're excited and such) was one thing that mattered to us. Occupational therapist are there to help with those problem areas by giving them tools to use to build skills to help them with everyday life. While I've only had experience with pediatric OT's, they aren't limited to just helping children succeed - they are able to help people of any age.

I don't openly tell people that my son goes to therapy, but occasionally it comes up in conversation. I'm not ashamed of the fact that he goes, but I personally have had a negative connotations when I heard the word "therapy" and I can't help but to believe I'm not the only one with those same feelings. More so, I always feel the need to explain why he's going after people give me the "he looks normal" look. Again, he is normal, and I don't want him treated like he's not normal. We're just trying to develop some of his skills that are a little bit behind what is typical for his age.

What did OT look like for HD when we first started?

I was really nervous going to our evaluation appointment. I had brought all the forms and questionnaires I was asked to fill out. As our OT looked through them, HD busied himself with Legos and Ms. Gail played quietly with the kitchen set in the corner of the room. HD was calm and collected as the evaluation began. Honestly, this was the ONE TIME I didn't want him to be. I wanted his OT to see what I was dealing with. It was a bit frustrating for me.

What the therapist did see, that I overlooked though, occurred while HD was building Legos. There was a small bin of pieces and a stack of cards for him to look at and then build what he saw. He built the designs for quite a while until it got too hard and he quickly gave up. Now that it was pointed out to me, it was very obvious that when posed with a challenge, he quickly gives up and wants nothing more to do with it. This is very common with his school work too, which in turn causes a strain on his academics.

After pushing the Legos aside, he went over to check out the kitchen with his sister and immediately grabbed something from her without asking for it - and he was mean about it. That behavior is very common with him. He struggles a lot with aggression. It often starts by grabbing things without asking, and then leads to pushing, hitting, or kicking when he doesn't get his way with his siblings. JP had quickly learned to defend himself, and as they get older, their fighting tends to get so much worse. One of my concerns for the therapist was HD's aggression. I didn't want to bring Ms. Gail with me to the evaluation appointment because I knew that it would inevitably lead to problems, but in this instance, I'm slightly happy it did. Just earlier in the year at the end of 1st grade, HD was suspended from school for choking two students on the playground and later kneeing one in the crotch. I needed help with his aggression.

Because we didn't have a lot of time left before we moved, we weren't able to work on a lot. In the short amount of time that we did have though, HD made significant progress. I sat in on several sessions with him and his OT so I could have a better understanding as to what they were doing, and what he was learning. Because aggression was a significant concern for us, our therapist opted to work on developing his awareness for his emotions first. To do that we watched and discussed "The Emotional ABC's." We watched about 10 minutes of the movie each week and then talked more about what each feeling looked like in his life. I was surprised as to how hard he often struggled to name feelings and emotions. No wonder he's had problems expressing himself!

To help with his emotional impulses, we started using the "Pause, Rewind, Play" toolbar to have him start thinking about his actions. For example, say JP throws something across the room and hits him with it. Before he reacts, he needs to pause and breathe.  Then he needs to think and name the feeling he's feeling as he rewinds, and think about the correct way to respond. Did it hurt? Is he mad? Was JP mad when he threw it? Then he needs to "play" and react appropriately to the problem. What ways could he respond? Throw it back at him? Hit him? Use his words? It's a big process for him to go through in a matter of seconds. At home while he was still learning the steps, I explained to him that if he was ever in a situation where he didn't know what to do, to yell " PAUSE!!" and I would come running to help him go through the steps together. If he was able to successfully call for help and react appropriately, he'd get a little prize from me. It could be as a little as an M&M but it worked. Don't get me wrong, there were still times when it didn't work. It wasn't fool proof, but it was part of the learning process.

As each session would begin, HD and his therapist would come up with a visual plan for their meeting. Using a dry erase board, together they would draw out pictures to describe what they were going to do, and for how long, while using a timer to keep them on task. (He didn't even know he was working on time management & awareness.) Even though HD didn't necessarily want to watch the Emotional ABC's video, knowing that time in the gym would happen later made watching the video more tolerable for him.

To give him credit, the gym was pretty sweet though. There was a small ball pit, a rope swing, a zip line, and a matted area at the bottom of a rock wall, to name a few things. I don't know if HD had a favorite because he loved them all. He especially loved the zip line though. At the end of it, he would let go and crash into the ball pit.
He also enjoyed taking a scooter down a ramp. Crashing through a tower of blocks and then hitting the padded wall at the end was often a highlight for him. He loves crashing into things and throwing himself on the ground. I didn't understand it, but he loved it.

Perry has been leary about occupational therapy for HD. By the time HD started his sessions, Perry was already living in Portland so he wasn't able to see first hand what HD was doing. Ask HD what he did at therapy and he'll tell you he played the whole time. But that's what OT's do - they do work through play. Playing IS work for kids after all! I can see his hesitations though.

Monday, June 26, 2017

I Hated My Child Because I Didn't Understand Him

Those four words are the worst thing a parent can say or think about their child. I hated myself for saying them to Perry, and I hated myself for even allowing them to be thought. I loved him endlessly, but there were times when he made it really hard. I thought he was being a defiant little jerk all the time, but I was just missing the biggest part of the picture. I didn't understand him.

I had spoken with his doctor numerous time about the possibility of him having ADHD. In my head it made sense. He was always on the go. Sitting still was oh-so hard. Perry has a hard time just sitting too. He always has to be doing something or twiddling with something. The two of them are peas in a pod in that sense. HD was impulsive too. He often times had no reasoning whatsoever as to why he'd do the things he did. He was always in trouble for something - he had a tendency for breaking things. Heck, he demolish a Lego brick. How does one even do that?! We often would joke that if you were to put him in an empty room, he'd still find a way to break something. He was like a tornado in every sense of the word.

HD was also so so so distractible. Our bedtime routine was always the same - go get your jammies on and brush your teeth. Those two tasks for him were impossible to complete. We were constantly battling him because, OH LOOK! A TOY! and now he forgot what he was going to do. Even sitting down to read a book had it's own challenges because there is always something more important to look at. ADHD made sense to me.

Bedtime itself was a battle too. We moved him to a toddler bed a lot sooner than we should have so his little brain wasn't fully comprehending the whole idea of "this is my bed and I lay on it to sleep." To him, suddenly his room was a playground he could access at any moment. You would think taking all the toys out of his room would help that problem, but it didn't. He could always find something to play with. We weren't naive to thinking that switching him from a crib to a bed would be easy. We just didn't think it would be so exhausting! No amount of stories would calm him down at bedtime long enough for him fall asleep. Laying with him was useless because if he did fall asleep, he'd wake up when I got out of bed. Eventually we'd just let him fall asleep wherever he chose. Often times he would fall asleep in front of his door as he was watching us through the door/floor gap.

HD is naturally a curious kid and that's why I was terrified to move him to the basement when he and JP got a little older. We lived in a split entrance home, and to get to the basement you had to walk past the front door. I had a fear that he would wake up and go outside, now that he was old enough to figure out door handles and locks. No wonder I'm a light sleeper! My fear never actually happened, but numerous times he would wake up during the wee hours of the morning and wander around the house. (You can read about one instance here.)

As his school years began, we were faced with more challenges. I've already wrote about how frustrating his first day of kindergarten was. (If you haven't read it, and want to, HERE is the link. There's more links to other school-related stories on the tabbed page.) We learned only a few days in that he needed to work on his impulse control after he jabbed a fellow classmate in the face with scissors. He was curious to see what would happen, and at no point did his little brain register, "THIS IS A BAD IDEA." Over his three years in school, he's spent many recesses indoors because of bad behavior or refusing to do his work. He was even suspended from school in 1st grade for choking a student. It breaks my heart that at this early of an age, he already dislikes school.

HD exhibited all these things that pointed directly to ADHD. He was fidgety. Even when he was sitting, he was still moving. (He is often found picking at himself. I'm pretty sure he's had at least one scab on his body since he was at least 18 months.) I imagine that's common for a lot of kids, but he seemed to take it to another level. In fact, everything I've mentioned thus far is probably pretty common for kids and their parents to experience, but I just had a feeling something about him was just not "right". Naturally I was so discouraged when I continually expressed my concerns to his doctor, and she continually reassured me he was just a boy. I had another boy, and I could tell in retrospect, HD's behaviors were not typical behaviors of a boy, even if the kids were, what she deemed "salt and pepper" kids. We had our own set of struggles with JP, but it was nothing near what we were facing with HD.

So if it wasn't ADHD what was it? I felt like I googled everything I could think of and everything pointed me right back to ADHD. That's when Robin stepped in and said, "I think he has executive functioning delays." But what did that mean?!

From what I've learned so far, executive function is a set of skills that helps you plan, control emotions, manage time, get tasks done, etc. Basically, it's the control board for your whole brain. The thing with having executive function delays, is that it often looks a lot like ADHD. No kidding, right? When HD would get mad and act out aggressively (which frankly happened a lot, poor JP) it was because he didn't know how to express his feelings and frustrations. When we sent him to get his jammies and teeth brush, his distractibility was due to his executive functions not being fully developed for his age.

One thing that had really become to concern me was his memory. He struggled desperately to re-tell stories of his life. Each night at the dinner table, we talk about our day and what we did. It was frustrating that he couldn't remember things out of the ordinary, like getting ice cream, or going to the park. Often times we would all be talking, and out of no where he would start talking about something completely off topic, and Perry and I would just look at each other with a "where did that come from?" look about us. Turns out, his brain was struggling to organize his thoughts, stuff that his executive functioning skills are in charge of.

I filled out what seemed like questionnaire after questionnaire when we first began OT and all answers pointed to executive functioning delays. Finally, after YEARS of knowing something was "wrong" with him, I finally had something to work with in October of 2016, on the brink of turning 8 years old. With HD's executive functioning skills not being as fully developed as his peers, it makes school a lot harder for him - socially and educationally. Knowing that this is part of the problem, is just the beginning of how we're learning to help him succeed.

Thursday, June 22, 2017

HD: A Struggle to Find Help

HD has always been a very active kid. He's been known as our wild child and watching him as a young kid, you could clearly see why. He kept us on our toes to say the least.  He was impulsive. Always doing things before thinking them through. Granted some of that is just kids being kids, but he never seemed to learn right from wrong.

There were so many things I wanted to do with my kids when they were younger, but I just couldn't. I've always had this fear of losing HD. Even now when he's excited about something, he tends to run off, but especially when they were younger, it was difficult task just to go to the grocery store. For example, I wanted to take them to the library, but I knew there was no way I could wrangle two busy boys to take on that task. When they were almost to the point where I might be able to take them, Ms. Gail was born and all bets were off again. I wanted to take them to the outdoor waterpark many times, but never felt comfortable enough going alone.

Facebook is notorious for making me feel like my life doesn't measure up to others. It was frustrating to see people taking their kids to the pool, going on vacations, or hiking trips. Things that seem so possible and ordinary, like grocery shopping or even going to the park, were really hard for me, not because I had three children in tow most of the time, but because I had one child who was always struggling with listening to directions and following rules.

I first started questioning his pediatrician as to whether or not he had ADHD when he was about 3 years old. Sitting still was a hard thing for him to do, and with pre-school on the horizon, I was nervous. (Don't even get me started on potty training!) He had a hard time following rules ever since he started crawling. He frequently bounced from activity to activity and keeping him focused was a huge task.

I remember when we moved him to a toddler bed in preparation of JP's arrival - those nights seemed to last forever. It took him years, literally, years, to learn to stay in his bed at night - even after we took away his nap. The kid was never tired and really struggled to be able to calm his body down enough to fall asleep. I remember countless nights crying because I was so frustrated with him. I think I spoke the words, "I hate my child" numerous times, for numerous reasons, and I hated myself for it.

Discipline has always been a struggle too. We seemed to have tried everything we could think of to try to teach him. Time-outs didn't work because he couldn't sit there long enough. It was such power struggle. It took so much time and energy to make the time-out chair work, that ultimately, I couldn't go on like that. Spanking him didn't work either. He might cry immediately when it would happen, but two minutes later he would forget that he had even gotten a spanking. Eventually, I felt like he was being spanked all the time, so I had to quit. We took toys aways (once I took all of them to the attic!) and we later opted for rewards for good behavior and nothing seemed to work. He'd get flicked on the head at the dinner table, or sent to time-out, or have a stern talking to, and it was so so so hard for him to not smile about it. He couldn't keep a straight face. Any time there was a question as to who did something, he would suck his cheeks in in an attempt not to smile. He really struggled to understand the difference between right and wrong, funny and not funny.

Being social with him is hard a well. Having visitors at the house always turned out bad. As soon as someone other than Perry or myself would walk through our door, he would immediately start bouncing off the walls in excitement. That would get his brother excited too and the two of them together is just plain chaos. They tend to rough house a lot when they're excited, and then inevitably JP would get hurt and things would continue downhill from there. Going places were equally as exciting. And then the pushing and shoving would begin because of the excitement... and downhill it would go. I'll get into his social life more later though...

Every year at the doctor, I continued present her with problems we were seeing with him at home, and the short answer was always, "He's a boy, he'll grow out of it." By the time he was 7, he had still not "grown out of it." Kindergarten was a struggle for us. But in 1st grade when he choked a kid at recess, I just had a gut feeling, he wasn't "just a boy" and that there was something else going on. At his 7-year check up, I presented his doctor a list of problems. It was a looong list. At this point, my sister Robin, was attending graduate school in the field of occupational therapy, and thought that HD could really benefit some OT. But you can't just go to OT, you have to have a referral. I was heartbroken and so discouraged after his appointment, when instead of getting a referral, we were recommended to get him into swimming or taekwondo because "these kind of kids" just need more structure. I don't know if discouraged is even the right word. I felt defeated. I had no idea what was causing my kid to behave the way he was.

I had just vented to my Bible study group about the struggles I was having him. I went into the appointment feeling pretty good, like I was going to start getting answers. They told me things to ask about and offered up their own advice. One suggested getting him in to see a neuropsychologist, and her husband could help with a referral, but I didn't believe what ever was wrong with him, was going to need a brain scan done to offer up solutions. I felt like that should be more of a last resort thing. I felt broken inside reporting back to them the next week that his doctor didn't think anything was wrong. So. Many. Tears.

I gave up on finding answers for him for a while. I felt stuck. I felt like a terrible parent because I had no idea how to parent him, whatsoever. Nothing was working. I'm not sure when exactly my breaking point was with HD, but at some point during the summer between 1st grade and 2nd second grade, I broke. I'm sure I called, or texted, Robin in tears about my frustrations with him, for the hundredth time. By this point, she was working in Missoula at the hospital, so she called his doctor to see if she would write a referral to OT for him. Turns out she was on vacation, the doctor on call signed off on one. Unfortunately, because Robin was working the hospital, his referral had to be sent out and then he was put on a waiting list in August. (Hearing that news was also hard to hear with the August I was having.)

Just as we got confirmation that yes, Perry did get the job in Portland, we got a call from the therapy office that they had a space open for him. Even though the therapist knew we'd only be around for another few months, we opted to get the ball rolling for OT anyways. HD was SO SO SO excited about it too!

I've been meaning to update as OT has progressed but it just hasn't happened yet. It's such a big story to explain, and I want to do it justice. Over the next, probably several weeks, (or maybe even the course of the summer) I'm planning on periodically updating my blog here and there with more insight about what exactly is going on with him, how we're handling it as parents, and the progress  he's been making. The change I've seen in him over the last several months is HUGE and it's exciting but the journey to get to this point has been anything but easy.

Wednesday, June 21, 2017

ITP and Me - My Health Update

Last Monday, Perry took the day off work so he would be free to get the kids off the bus while I went to my follow-up doctors appointment regarding my low platelet counts. The quick answer, is that I have an answer, but not a complete one.

Before my appointment began, I had another blood redraw to see what my platelet count was currently. That whole process takes only a few minutes, so I had ample time to sit around and wait as my doctor was running late.

Got platelets?  (I.T.P Awareness)At the appointment, my count dropped 3 units to 66 units. Though it is still much lower than the minimum of 140, it has seemed to stabilize, which is better than it roller coaster-ing I suppose. Receiving all the results from all the samples they drew took some time. Some were sent to Seattle, and some to Oregon State University.

She went through all the positive things first. I don't have a vitamin or iron deficiency, nor do I carry the gene for rheumatoid arthritis. That was relieving to hear, as it does run in the family on my dad's side. I did, however, test positive when they tested for lupus.

Some Auto-immune disease humor for you, though quite frankly, there is nothing funny about being a sufferer.For those who aren't aware what lupus is, it's an immune disorder. Normally our bodies create protein, called antibodies, to protect us from bacteria, germs, and viruses. In people with lupus, the immune system can't tell the difference between the invaders and the body's healthy tissue, resulting in autoantibodies that attack and destroy healthy tissue. It can attack skin, joints, and/or organs.

Even though the test came up positive, it is not definitively clear whether or not I have it. More tests from a rheumatologist are going to be needed to confirm it's existence in my body. She said it could be from a difference immune disorder instead, and then rambled off a few. The only one I can remember is malaise. While I don't know much about malaise, I have read that it can be associated with depression and fatigue. I'll go in for more testing right before my trip with the kids to Montana.

The last report she pulled up was from a lab from Oregon State University that confirmed I do have an immune disorder - immune thrombocytopenia, abbreviated as ITP. To put it simply, my body is getting rid of my blood platelets too soon, so my bone marrow is working in overdrive trying to keep up a supply of platelets. Without platelets, my blood has a harder time clotting.

What does ITP look like for me?

Let's see... the big one is that I bruise easily. Really easily. My legs are constantly cover in bruises, most of which I don't know where they came from. While I haven't had much of a problem with it in the past, over the last month or so, my gums have started to bleed when brushing. It's more annoying than anything.
The bruises on my body tend to make me a bit self conscious. Most of the time, they are dark purple and just look terrible. The bruise on my thigh was from this past December. I went sledding with some friends, and never crashed once, but woke up the next morning to this. It took close to three weeks to heal itself. The other picture is of the back of my legs on Sunday. The bottom bruise on the right is now pink and purple. The tops of my thighs are also speckled with bruises as well. As I've said, I've always bruised easily, it's just more or less frustrating now knowing that I didn't do anything to earn that marking. 

Though my day-to-day life will continue to stay the same, I do have to be extra careful when getting sick as having bacteria, viruses, and germs in my body can cause a flare-up of my immune disorder - in this case, a drop in my platelets. Anytime I have spontaneous nose bleeds, or begin getting purple/red dots on my skin, I need to have my count re-checked incase it has dropped too low. If it drops too low, spontaneous bleeding can occur - not just having nose bleeds, but organ walls and vein/artery walls can break which could result in, well, death.

While I don't necessarily have to give it up, alcohol consumption must be done responsibly (obviously) because it can damage my bone marrow, which is responsible for making blood platelets. Other things that can do the same would be drinking things with quinine (like tonic water), or beverages with aspartame (like diet pop and low-fat/sugar free candy and pop). The hard part for me will be reducing the amount of tomatoes, garlic, onion, blueberries, and grapes I consume as they can hinder blood clotting as well.

One of these days, I'll get myself together a list of foods that I should be eating more of to help boost my platelet count, though diet isn't directly linked to ITP. Eating a well balanced diet is always beneficial though!

For now, I wait for July to come so I can chat more with the rheumatologist. Really, I just want to know why I'm so stinkin' tired. All. The. Time. Once a month for the next several months I'll return to the oncology clinic to recheck my numbers and hope they stabilize. If they continue to drop lower, we'll be talking about doing steroid injections. I'm hoping it doesn't come to that though! I'll update you when I recover from my trip to Montana :)

Tuesday, June 20, 2017

Football + Lacamas Lake Park + Father's Day

Sunday was a busy day for us! With it being Father's Day, I wanted it to be a little more relaxing for Perry instead of go-go-go. But I think it's safe to say, everyone had a fun day.
We thought JP's last football was the weekend before but they sprung another one on us. He and HD have improved SO MUCH over the course of the season.

This weekend was also HD's championship game. They had only lost their first game this season and had the best record overall. He was so so so excited for his game! And they won too! Immediately following the games, was JP's end of season football party, clear across town. He rode their with a friend so he had plenty of time to play while we watched HD's game. We planned that perfectly as then we only had to stay for half an hour :)
Last week my parents made a quick trip out to see us and on Wednesday (the only nice day they were here) I took them to Lacamas Lake Park about half an hour away from here to do some exploring.
Trying to find something my dad will enjoy is a challenge, so I opted for a little hike to see a couple waterfalls. It was so nice to get outside for the afternoon!

With that little hiking adventure under my belt, I wanted to take the boys to see the waterfalls too. After finishing a few things up at the house, we packed up and headed out for a Father's Day adventure with Perry. Because Ms. Gail and I already saw Lower Falls and Pothole Falls, we decided to hike to Woodburns Falls.

Just before we got to the falls, there was a fork in the road. We happened to pick the one to take us to the falls, but on the way back, we decided to take the other one to see if it would lead us to the top of the falls. It didn't. We hiked and hiked and hiked, and then took a dead end trail for a while and finally made it to Lower Falls. By that point, Charlotte had slipped a few times and was a muddy mess, and her little legs were getting tired. Quite frankly, mine were too, so I was able to successfully lead us back to the beginning of the trails. Without Perry though, I'd have been lost out there. My sense of direction in the woods is terrible!
Just as we were pulling back into town, all three kiddos passed out in car. I suspected Ms. Gail would, with the possibility of JP too as he was getting pretty sluggish towards the end, but was surprised to see HD conked out too! I had dinner planned for the night, but with our hike taking longer than expected we grabbed some food to go and had a little picnic in the front yard.