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.

https://www.thinglink.com/scene/783079912645853185

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 ABCMouse.com. "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!

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.

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.

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.