Holidays with a sensory kid are hard. Kevin has really thrived with the regular routine that he has at school, so when the routine is disrupted, as is the case with holidays, he often has a fight/flight response because he doesn't know what to do and his sensory experiences are different and less predictable. We didn't even get around to putting up the fake tree until last Sunday, and it's already in pretty bad shape. The kids can't keep their hands off of it, and it's been squished, knocked over, and bent. Forget the ornaments. We didn't even bother with those. There have definitely been more meltdowns and arguments since the break started.

We had occupational therapy this morning, so I had a chance to talk to the therapist about what we can do to help Christmas break go better. The most important thing is probably to make a plan with Kevin for what we're going to do each day so that he knows what to expect. We are also going to start the Wilbarger brushing protocol the day after Christmas. The OT thinks that it will really help Kevin to stay more regulated. To do it you brush all over the person's body with a special brush, using the same order every time, and then you compress all of their joints. She has done it a few times for him at therapy and it seems to help him focus, so we'll see how it goes. It definitely helps a lot to get outside to play, so we'll have to work hard to make that happen. It's been rainy and icky for several days, which has made it hard.

It's still hard to figure out how Kevin ticks. I know that he almost always calms down when we read books and that playing outside or in the hall helps. Chewing gum also seems to be calming. I need to remember to end things while they're still good instead after he goes crazy or has a meltdown. It's always better if I remember that. He literally does not understand the concept of "too loud." On Sunday in Sacrament meeting we kept telling him he was being too loud, and finally he said he didn't know what that meant.

I know that during the break I need to focus on spending quality time with the kids and being patient. I have to remember not to compare my kids to other people's kids. There are some battles I have chosen not to fight because it's not worth it right now, and that's okay. I also have to keep reminding myself how much things have improved in the past few months. Kevin communicates with us a lot better than he did a few months ago, and that really helps us to meet his needs. He also doesn't run away from me all the time like he used to, which has removed a lot of stress from my life.

I can also be a lot more patient with some of the things he does now because I recognize that those behaviors are related to dyspraxia and SPD, and that he's not deliberately trying to displease me. I can see that he refuses to say his own prayers without help because he struggles with praxis, not because he's being lazy. I can see that picking up the toys is overwhelming for him instead of feeling like he's just trying to get out of doing work.

On Sunday when Kevin was having a rough time, I decided to have him help me take out the trash. Pushing and lifting give him proprioceptive input and usually bring his arousal level down, which is why I thought it would help. We loaded the stroller up with the trash and recycling, and he pushed the stroller the whole way there. We found a VCR that someone had left by the dumpster, and Kevin said, "Oh, look, let's bring that home and take it apart." So he put it in the stroller and when we got back he and Ryan spent a couple of hours tinkering. He was really calm the entire time, too, so that was nice. At one point I started explaining to Kevin what a VHS tape was, and suddenly it felt really odd because it felt just like when I was a kid and my mom told me about the 8 track tapes.

things about the kids

One day Kevin came home with a pine cone in his backpack. I asked him where he got it and he said, "I brought it with me because my gloves are dirty and I need the pine cone to clean them." I didn't get around to taking the pine cone out of his backpack, so the next day when I felt it still in there through the fabric and commented about it, Kevin said, "Yep, I have a pine cone in there . . . AND . . . a pear (giggle)." I was confused about the pear comment, but that evening Heidi was rummaging in his backpack and there really was a pear. Not sure where it came from.

Kevin claims that he has thunderpower. I'm not completely sure what this thunderpower does, but when it rains he lets us know that it's his thunderpower doing it. His other favorite game is shooting tigers.

Kevin's latest imaginary friend is a robot named Raleigh. I think Raleigh is a grad student at UNC because Kevin often tells us about Raleigh's office.

Kevin didn't pass his second hearing test at school (he failed the first one because of a lot of wax), so we decided to make another appointment to see the doctor (this is doctor visit #5 for Kevin since school started). I suspected that he probably failed the test because of his ear infection, and the doctor seemed to agree. He passed the test just fine at the doctor's office, but his ears were still a little swollen, so we got a prescription for a non-penicillin antibiotic and a referral to an ENT. We went to the ENT, and (Surprise!) she said he's recovering from an ear infection and she's not going to bother checking his hearing until February, so we get to go again in a couple of months. I'm getting pretty tired of doctor appointments.

Occupational therapy seems to be helping a lot, but I still really don't understand what's going on. I know that when he isn't sure what he wants to do he seems to go nuts, and it also seems like tactile, vestibular, and proprioceptive input affect his behavior, but I can't figure out how. It used to be that giving him a big squeeze helped him to calm down, but now he doesn't like it anymore and sometimes it makes him panic. I think school has affected his senses a lot. Maybe he's getting a lot more sensory input at school than he used to. I've been reading Raising a Sensory Smart Child for about nine weeks, and I finally had to take it back to the library before finishing it. I don't know how much practical information I got out of it, but there were many times while reading the book when I found myself nodding my head and saying, "Yes, that is Kevin." So at least I'm not the only one and it's not just my imagination.

Ann Marie got her first taste of people food on Ryan's birthday a few weeks ago. We were having dessert (homemade BYU mint brownies), and she was screaming up a storm because she wanted to be involved. So I put her in the booster seat and gave her a spoon and a couple of bites of applesauce. After that she was happy. That's all she wanted. She's tried a few different things since then. We got some free baby food from someone who was getting rid of it, so that's been convenient. Soon I'll have to start making baby food. She was not a fan of the baby food peas, by the way, and I can't say I blame her, because the only thing worse than canned peas is pureed canned peas. The pediatrician told me to work up to feeding her four jars of baby food a day, which I think is way too much for a six-month-old, so I nodded and smiled and ignored her advice. Right now she's having 1-2 jars a day.

Ann Marie finally remembered that she knows how to roll over from her tummy to her back, so she can move around a little bit more. She's not quite army crawling yet, but she can turn in circles. By this point Kevin and Heidi were army crawling and Heidi had stood up in her crib, but I'm not complaining if Ann Marie takes her time. It's a lot harder to baby proof with two older siblings around who like to play with little dinosaurs and bouncy balls.

Heidi loves picking holly berries from the bushes outside. She always has to collect a handful when we are at the playground or picking Kevin up from school. I have to remember to make her drop them before we come inside so we don't have little berries everywhere.

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.