update on Kevin's OT

I've had some people ask about how Kevin's occupational therapy is going, so I thought I'd write an update.

We've had four therapy sessions now, and they've been really informative. Kevin's therapist, Jenny, concluded pretty quickly that Kevin is struggling with praxis (i.e. he has dyspraxia). Praxis is the process of coming up with an idea, planning how you're going to do it, and executing it. He struggles with the first two steps. When he can't come up with an idea or he's not sure how to carry out an idea, he will often go into fight or flight mode, and when that happens he will get distracted, dump out bins of toys and kick them around, talk a lot, or throw things. In therapy she has been doing activities where he has to make plans and then carry them out. Last week they pretended the floor was hot lava and he decided he wanted to go from the loft, to the ball pit, to the cloud (kind of like a stretchy hammock), to a step-stool, and then back to the loft. It was interesting because when he was in the ball pit he didn't know how to get into the cloud (or how to ask how to get in the cloud), so he had a fight/flight response (he got distracted and started talking and trying to do other things). Then later they did the hot lava game again and he was supposed to get in the cloud again, and rather than use a rope ladder (which was closer and would be more obvious to most people) he used the same method Jenny had showed him before. Jenny said that's pretty typical for someone with dyspraxia. Today they played hide and seek, and Kevin had a hard time coming up with his own ideas for places to hide. Instead, he would try to copy the places where Jenny had hidden.

Jenny also referred Kevin for speech therapy, but we haven't gotten an evaluation yet. I didn't realize this until Jenny pointed it out to me, but Kevin has a hard time articulating concepts like up/down/over/under and he uses a lot of gestures instead of telling what he wants. I guess I got so used to it that it didn't occur to me that he wasn't doing that. He also has a very disjointed thought process. He changes the subject a lot when he's talking. So speech therapy will help with that, and it will also help with the dyspraxia.

I'm so amazed that there are people who have figured this stuff out and learned how to recognize it in people. I knew that some of the things Kevin was doing were abnormal, but I would never have been able to put all the pieces together to figure out the things that Jenny figured out in just a few sessions. A lot of the things he does make a lot more sense now.

So far he's on grade level at school. The only problem is that he gets distracted when he's doing independent work, which I think is partly related to dyspraxia. Hopefully with therapy and support at home he will keep doing okay. I think school has actually done a lot to help him. Seeing the other kids writing, playing, and interacting has helped him figure out how to do it too. He's developed in a lot of ways since starting kindergarten.

Halloween

The kids had a fun Halloween this year. Kevin and Heidi dressed up as Pazu and Sheeta from Castle in the Sky, one of their favorite movies. The costumes were actually pretty easy to put together. For Heidi's Sheeta costume, I used one of my dark blue shirts to make a dress by following this tutorial, and that was the hardest part. It wasn't perfect, but for a Halloween costume it worked just fine. Then I bought a headband and braided Heidi's hair. Sheeta's stone is a very important part of the movie, so I drew the design with a yellow pencil onto blue construction paper and taped it to the medal Kevin got from playing basketball last spring. For Kevin's Pazu costume, I basted a patch to some worn out Sunday pants and cut the sleeves off of a brown button-up shirt I found at Goodwill to make a vest. The hat was borrowed from a friend and the bag was one I already had. When the kids got all dressed up it was so fun! I was really pleased with how the costumes turned out.

We had a ward trunk or treat party on October 30. Amazingly (and thankfully) it was not a chili cook-off (I know, heresy!). We had a baked potato bar, and it was actually really good. The kids even ate a good dinner. We ended up sharing a table with some people who recently moved here from China, and it was kind of funny to see their reactions to everything. They were very confused by the concept of a baked potato. One of the ladies held one up (still wrapped in foil) and said, "Are these steamed?" I explained that they were baked, and she wanted to know if they would taste like steamed potatoes, so I said they were kind of like steamed potatoes. They looked pretty skeptical, but they did eat the potatoes. I'm not sure if they liked them.

We had one friend from the ward who saw Kevin and Heidi in their costumes and knew who they were dressed up as without us telling him. There were a few more people who recognized them once we told them who they were, but apparently most people have never seen Castle in the Sky. Most people are missing out.

After dinner the kids were invited to dance on the stage, then we had trunk or treating outside. Normally we buy a big bag of candy from Costco for Halloween, but I didn't want to have all that sugar in the house this year, so instead we bought jelly bracelets and little plastic dinosaurs on Amazon and handed those out. I know the big kids were probably disappointed, but a lot of the little kids were really excited, and so were many of the parents.

I always enjoy seeing the kids get to try different types of candy after trick or treating. I never buy candy, so it's usually a fun new experience for them. Heidi didn't like the Sour Patch Kids (see the picture below). Actually, about the only candy she liked were suckers and smarties. She didn't even like any of the candy bars (which is okay, because Ryan and I were happy to take them off her hands).

On Halloween we went trick or treating in our apartment complex, which was also really fun. Ann Marie came along in the stroller dressed as an elephant, but I didn't get a picture of her. Maybe sometime I'll get around to it. I was pretty impressed by all of the kids who knew Kevin and said hi to him.

So, two weeks ago Kevin had an ear infection and he started taking amoxicillin. Three days later his face was red, so I stopped giving the medicine to him and waited until his well-child checkup so we could ask his doctor about it. She didn't think it was an allergic reaction because it was smooth and didn't look like hives. So we started the amoxicillin again the next day. Then on Sunday Kevin broke out into hives all over his body, and after we gave him Benadryl it was still getting worse, so after debating for a while I took him to urgent care while Ryan stayed home with the girls. The doctor agreed that Kevin is allergic to penicillin and got us a prescription for some steroids to help the rash go away. The steroids were even more disgusting than the liquid amoxicillin, and there was a lot of grimacing when it was time for Kevin to take them, although fortunately the dose was only 4 mL instead of 10 mL. The hives are definitely going away, so that's good, but now it looks like the ear infection might be coming back, so we'll see if we have to go back in and get a non-penicillin antibiotic for Kevin.

Trips to the doctor in the past month:

1. Referral appointment for Kevin
2. Well-child check-up for Heidi and Ann Marie (followed by a trip to the pharmacy for antibiotics for Heidi, who had an ear infection)
3. Early morning trip to the doctor for Kevin's ear infection (followed by a trip to the pharmacy, which was closed, so we had to go back again later to get his antibiotics)
4. Well-child check-up for Kevin (I reassured the doctor that we're not moving in)
5. trip to urgent care because Kevin had hives (followed by a trip to the pharmacy to get steroids to treat the hives, but the prescription wasn't ready yet, so we had to come back again later)
6. Possible appointment with pediatrician to check if ear infection is back

Total: 5-6 doctor visits, 5 pharmacy visits

Yippee.

quotes and kid stuff

Kevin: Mom, can you pop some popcorn for us and we'll watch a movie?
Me: Well, I don't think we can watch a movie right now because I need to make bread and wash the dishes.
Kevin: Well, how about you make us some popcorn and then you can make bread and wash dishes while we watch the movie?
Me: But then I wouldn't get to watch the movie.
Kevin: Well, that's okay.

Kevin: Mom, who is your favorite princess?
Me: Belle.
Kevin: How about you, Heidi? Who is your favorite princess?
Heidi: Cinderella (which was an unexpected response because I didn't know she knew about Cinderella)
Me: Who is your favorite princess, Kevin?
Kevin: No, I don't like princesses. I'm a boy, so I have to like bad guys.
Me: Oh, really? Well, who is your favorite bad guy?
Kevin: Um, Spiderman.

Often when Ryan is working on something (often it's blog posts) he will find a song that helps him think and listen to it over and over again. Kevin has does the same thing. He has a few songs that really help him calm down. It warms my heart because whenever he does it, it reminds me of Ryan. It also seems to help him to listen to songs with earbuds using the ipod (as opposed to just hearing them through the speakers). Some of the songs Kevin likes are Believe (Josh Groban), Oceano (Josh Groban), Bless the Broken Road (Rascal Flatts), and Down to the River to Pray (Alison Krauss). He also really likes the music on the Couch to 5K podcasts I've been using.

Heidi
Heidi is convinced that her tableware has to match her clothes. If she's wearing a pink shirt, a purple bowl will not do.

The kids have both been doing soccer at the YMCA this fall. Kevin has improved a lot since last year and is for the most part participating and listening to his coaches. Heidi has been struggling for some reason. I signed her up because last year she was so upset that she didn't get to participate, so I thought she'd have a great time. The first few practices, it took her 20 minutes to be willing to go onto the field, and she only consented to participate if she could use the pink ball. Last week she ended up crying so hysterically that Ryan had to take her to the car. She was still crying and shaking when Kevin and Ann Marie and I came after practice was over. But this week went much better. I held her hand on the field a lot of the time, and that helped her to be more willing to participate. After a half hour or so she was independently chasing the ball, and there were even a couple of times where she kicked the ball quite a ways down the field and then another teammate was able to score a goal. So I'm glad that we were able to find a way to help her feel more confident. I think she gets overwhelmed by all the girls, especially when they are playing a game with the other team.

Ann Marie
Ann Marie puts everything in her mouth (including her toes) and drools a lot. She loves rubbing her feet together and does it as much as she can. She is figuring out how to make a "D" sound.

stuff post

I don't even like Kay Hagan that much, but around here there have been a lot of ads against her. The irritating thing is that they're pretty substance-less. I almost wouldn't be surprised if someone got on the radio and called her a poopyhead.

I am astounded at the rate at which Heidi can run with a pair of pants around her ankles.

A few weeks ago I checked out the movie for Northanger Abbey. Today I finally got to watch it (I gave up a nap to do so--yes, it was worth it). Apparently nobody else in this house is remotely interested in watching a period drama. I tried watching it with Heidi, and she moaned and said, "I want to watch a movie about little girls, not big girls." Ryan wanted to watch Non-Stop (which was also really good). I hadn't realized how hard it is for me to get around to watching a movie all by myself.

I am done with red delicious apples. If I wanted baby powder I would buy baby powder, not apples that have the same texture as baby powder. I bought some from Costco because they were cheap and I thought they would work just fine for dehydrating, but they are so bad I can't even cut half of them.

I didn't lose hair after Kevin and Heidi were born, but this time I feel like I'm losing a lot of hair. Washing my hair feels like getting tangled in a spider's web these days.

I finally feel ready to move on to the Week 3 routine for Couch to 5K. I've been on Week 2 for a month. The Couch to 5K program has nine weeks, so I would probably be running a 5K already if I were following the program exactly, but I've had to take it a lot slower. It's okay. The improvements are subtle, but I can tell I'm getting better.

One day several months ago I was just idly looking at my family tree on familysearch.org, and I ended up going all the way back to some ancestor (assuming all the genealogy is right) named John Crow. At the time his page said he was born in Connecticut in 1602 (too early to have settled in Connecticut, let alone been born there), and he had twenty-one brothers who were also named John Crow. Obviously there were issues with his record. I didn't have time to figure out what was going on, but I was sort of curious to see what ended up happening, so I clicked the star to get notifications if there were changes. To my surprise, soon after that someone started doing fairly extensive work on his record. She merged all of those John Crows, added a lot of sources and a life sketch, and some other things. Now here's the sad part: About two weeks after she put a lot of work into deleting about a dozen couple relationships that were all duplicates, Family Search swooped in with their Legacy New Family Search stuff. (They have been gradually adding things from the New Family Search into Family Tree for the people who don't want to lose what they did in New Family Search, but in my experience it's mostly been clutter with not much useful information.) So unfortunately all of those couple relationships were added back again by Family Search. As humorous as it has been for me to see this entire thing unfold, I'm guessing this lady was probably really frustrated when that happened.

On Thursday we had one of those days. Kevin had an earache, so we went to the walk-in clinic early in the morning to see the doctor. Then after going into Harris Teeter to get the antibiotics, we found out they don't open until 9 a.m. So we had to go back home and then come back later, which meant I brought three kids into Harris Teeter by myself. It was sort of okay, though, because they had some really good cookies for samples. Then we came home and I spent half an hour persuading Kevin to finish drinking his nasty medicine. Who knew two teaspoons could be so much? Then we watched movies. Then Heidi decided it was fun to make Kevin mad at her and she accidentally broke his pumpkin while trying to be annoying, so he yelled in her face and I sent him to his room. Two minutes later I checked and he was completely zonked out on the floor. Then the maintenance men came and gave us new burners that actually get hot enough to boil water (everyone in Baity Hill is getting new burners). Once they were gone I took the opportunity while Kevin was sleeping to make dinner. Problem. After I finished making it I realized the kids would not like it, but now my window of opportunity for making dinner was over because the kids were going nuts and wanted to play. I had no idea what to make instead. (Maybe normally I would say tough luck, but they had eaten very little that day as it was and I knew they'd be in bad shape if they didn't eat until the next morning.) While I agonized over what to make for dinner they got even more wired playing in the hallway with friends, until finally it got late enough and I got desperate enough that I just made them some oatmeal. Heidi told me exactly how she wanted it and I meticulously followed her directions, and then she refused to even eat a bite. So after attempting (unsuccessfully, of course) to force-feed her I put her in bed and locked the door. When Ryan finally got home we ate the dinner I had made (which was fine) and then I went on a run. Ryan gave Kevin another dose of antibiotics while I was gone, and apparently there was much weeping and wailing and gnashing of teeth, and there is also a lovely pink spot on the carpet. As I was finishing my cool-down walk (around 8:15) I heard the fire alarms go off because of course somebody in the building forgot that we have normal burners that get hot now and they burned their food making a late dinner. Ryan had to bring all three kids out of the building by himself. Heidi had been really deeply asleep and she freaked out when the fire alarms went off. She was still quivering when we came back in. We didn't get the kids back in bed until 9:00. What a day.

un-learning how to read

I know a lot of people probably already saw my rant on Facebook, but I'm going to go into greater detail here on my blog.

Last week I was excited to learn that Kevin would be bringing home books that he was supposed to read to me. The first time he brought a book home, I opened the book and thought, "Wow, he can read words like these already?" Then we sat down to read the book. He read it in five seconds, and when I asked him about it, he said that no, he had never read this book before. I had him read it again, and when I watched his face I realized he wasn't even looking at the words. The pictures were so obvious that he didn't need to look at the words at all.

Okay, now let me explain my definition of "reading." To me, reading implies that you can decode the word (for most words, sound it out, or recognize the word if it's a sight word) and comprehend it. You do not need any pictures for this. Does that make sense?

Based on my definition of reading, Kevin was not reading this book. He was guessing based on the pictures.

We went back to read the title, which was not obvious based on the picture on the front cover. He moaned and said he couldn't read it because he didn't know what it said.

Here is an example from a similar book that he brought home yesterday.

When we got to the last page, he said, "The animals." I told him to look at the word and sound it out, and then he realized it said "the farm."

After he read the first book from school, I opened up this book that we had at home and asked him to read it. He looked at the first page and said, "A chicken." It took a little coaxing to get him to sound out the words instead of guessing, but he read the rest of the book and did a great job.

I'm upset because books like these create bad habits in early readers. They get in the habit of guessing what the words are based on the pictures. They also get in the habit of looking at the first couple of letters in a word and guessing what the word is (for example, on the page above that says, "the farm," Kevin would just need to look at the first letter and at the picture and realize the word was "farm"). When I was young and listening to some of my peers struggle with reading, and when I was a teenager and volunteered in the elementary school, I observed that this was a very common problem with kids who struggled with reading. My opinion is that it's unnecessary to start with books like these kindergarteners are reading, and in fact it's doing more harm than good. English may have a lot of exceptions to the rules, but it is still a phonetic language, and if kids are taught English like it's Chinese it's going to take them a long time to learn to read fluently, and they will struggle with reading new words. When I learned to read we started with sounding out words, then we moved on to learning letter combinations (like ow, ea, ar, ai, ful, etc.), learned to use the long vowel sound for most words that end in e, and in the midst of this we also picked up sight words.

I felt resentful that I'm being asked to be an accomplice in teaching my child bad reading habits (especially after all of the work I put into teaching him to read last summer), so I emailed his teacher about it. Apparently the point of these books is to help them develop confidence. Yay for confidence, except where's that confidence going to go if later on they are terrible readers?

The bright side is that at least I know what Kevin is "reading" at school, so now I can work with him on the right way to read at home. We still have quite a bit of the reading book left, and we also have some cute little books called Animal Antics (an example is the book about the hen above). I'll be hunting around to find more.

Up until now I have mostly been very happy with Kevin's school. His handwriting and drawing have improved 300% since he started school, and that by itself is huge to me. I prayed about it again and I still feel like this is where Kevin is supposed to be right now. At this point I don't think this is a deal-breaker, but it's definitely something I will keep my eye on. Everybody raves about how great this elementary school is, so we will see how things pan out. I realize that I'm not trained as an elementary school teacher, but I really don't see any benefit to teaching kids to guess with pictures.

unloading

There are some hard things that I have been dealing with about Kevin that probably started before he was even two years old. It was interesting because I would tell people about things that he did and they would say, "Oh, yeah, that's just boys. They're really active." But that never sat right with me. It was more than just that he's a boy, but it's been hard to put my finger on what exactly it is. I hoped that over time he would grow out of it, but in many ways it's stayed the same or gotten harder.

A couple of years ago there was a boy in the ward who, I learned, had Sensory Processing Disorder, and I ended up asking his mom to tell me about it. It was a really helpful conversation, and ever since then I've suspected that Kevin is also dealing with sensory processing issues. My friend recommended an occupational therapist, but I kept procrastinating making the call, thinking that he might grow out of it or that I could deal with it myself.

Now that he's started school I've become even more aware and concerned about some of his behaviors. He's getting a little better now, but for the first month he had a hard time getting along with peers on the playground and on the bus, and after getting a couple of notes and a phone call from the school I got really worried and decided we really should at least get him evaluated by an occupational therapist. I was ready to get some help and some answers, because I don't understand what's going on. The interesting thing was that after I made the phone call, Kevin came up to me and started crying and asked me what I had been talking about on the phone. I realized that he's aware that he's struggling with some things and it bothers him, even though he doesn't really have the resources to explain those feelings verbally.

Last Wednesday we had an evaluation with the OT. We talked about the things we are dealing with and discussed some things that we would like to work on with Kevin during therapy. It was reassuring to realize that it's not just my imagination--there really is something going on. I told her that he is constantly running away from me, explained what we go through every time I take him to a store, and explained what we have to deal with every time I have to bring him back in from playing outside, and I could tell from her response that this is not just Kevin being a normal active boy. So once we get things approved by insurance we will probably start to do some occupational therapy and get an idea of what's going on with his body and what helps him. The OT agreed that he is struggling with some sensory processing--definitely the tactile sense,  and probably the auditory and the proprioceptive sense.

Here are some of the behaviors we have been dealing with:

He runs away from me. Usually at playgrounds it's a constant battle to make him stay at the playground where I can see him. We've been bolting the apartment door since he could reach it because he would run out in the hall all the time. Even now he will get a chair and run out in the hall once or twice a day, and often more on the weekends. He doesn't stay in the bounds I set or pay attention when I tell him to come back.

He almost always throws a tantrum when we have to leave fun places like the park or friends' houses. Most of the time I have to drag him physically, and he will hit my hands to try to get me to let go of him. This is despite the fact that he actually has a hard time being in groups of people for long periods of time, which is often why we're leaving the park in the first place.

Going to stores or other places with crowds is always a huge ordeal with him. Just getting him to the car takes forever because he gets distracted by so many things, and then once we're at the store he has to touch EVERYTHING. He just can't help himself. It makes shopping trips take forever.

When his need for touch is out of balance, he goes nuts. He'll make loud and distracting noises, bounce in his seat, get aggressive, dump out tons of toys, and more. We've figured out that most of the time when it gets like that, the best way to calm him down is to squeeze him really hard. It usually makes him grin and he'll beg you to squeeze him harder and harder. After a lot of squeezing his behavior will get a little better. But sometimes, he can barely stand to be touched at all. One time he got off the bus very angrily, and when I tried to gently hold him in place to ask him what was going on, he couldn't stand for me to do that and told me I was breaking his bones.

He has a hard time gauging his own strength. He'll hug us so tight or bump into us so hard that it hurts without realizing he was hurting us. He used to hug the baby so hard that she would start crying.

He has a hard time following directions and answering questions directly. He gets distracted.

There isn't really any official diagnosis at this point. I don't think that's even necessarily the goal. I guess the closest thing is Sensory Processing Disorder. One of the most frustrating things over the past few years is feeling the judgment by some parents who don't get it. There have been babysitters or primary teachers who would try to curb the behavior by being really strict because they didn't understand that he can't help it (which caused a lot of stress for Kevin). The worst are the judgmental looks from strangers who see a kid who looks like a second grader (have I ever mentioned Kevin is really tall?) acting up and seem to think that it's a parenting problem. That hurts. I really, really appreciate the moms who have been supportive and nonjudgmental.

I am hopeful that OT will help us understand better what Kevin is dealing with and how to help him. This is really unfamiliar ground for me. What I do know is that Kevin is God's son and that he came to our family for a reason. We have the spiritual resources to help him grow and develop. Other people may be ignorant and misunderstand him, but I will never, never give up on him, and neither will Heavenly Father.