Camp Henry Horner

There is so much I need to write about that I think this will be a monster entry. I'll try to break it down into two parts: logistics, then reflections.

LOGISTICS
We had the most generous opportunity given to us by MGB Services, the company that runs Nikko's ABA home program. We had the chance to attend their Family Retreat Camp this past weekend at Camp Henry Horner in Ingleside, IL. Not knowing what to expect, we packed items from a suggested list and prepared for a camping adventure (not tents, but a lodge-like environment). I was pretty frantic by 5p Friday afternoon because we had to get there before 7p and there was going to be traffic. It took us an hour. We arrived at a camp ground that is past Lake Zurich, toward Baxter (the pharmaceutical company) and the Volo Car Museum in Volo, IL. There was a dinner in the dining hall and then time to go back and unload the Pilot. We had a LOT of stuff to bring inside our room and the staff was great in pitching in.

Saturday was an extremely busy day. The weather was cloudy and resulted in rain that put a damper on some early outdoor activities. We went to a rec hall where floor hockey was attempted. Our kids and a few others opted to play with some balls and cones in an adjoining room since the hustle and bustle of floor hockey was a bit much for my younger kiddos. We headed back to the main lodge (our headquarters) and the kids were ushered to do activities, arts & crafts, and play some sports while we convened with the adults for some speakers regarding special needs, finding quality/"me" time, and improving communication/relationships. After lunch we walked to the lakefront and the kids played in the sand while others went out on boats or canoes. Nikko and Ronin ultimately went on a rowboat with Denis and a helper named Adam while Audrey and I stayed on land. We came back, got the kids cleaned up, and then headed out to another kid-based activity and kids' dinner. The adults, meanwhile, were invited to an adults-only dinner,then later rejoined our kids at a campfire near the lakeshore with songs and smores.

The final day, Sunday, had the kids doing more arts and crafts while the adults got a chance to pack up. Then the families went on a short hike, played some soccer/basketball, and had a barbecue lunch together before gathering our things and heading home. That was our trip in a nutshell. We got to do a lot of walking down paths around the camp site. We also had to carry Audrey a lot, and sometimes Ronin because I feared his asthma would flare up trying to keep up the pace. The weather wasn't totally warm, mostly cool, sometimes wet. We were with other families with SN (special needs) and NT (neurotypical) kids so hearing Nikko whine and cry loudly wasn't a surprise to anyone. This was basically a mini-vacation for a weekend and I will always be so grateful for it.

REFLECTIONS
"Expect the unexpected."
That was straight from Linda H.'s talk during one of our adult workshops this weekend. I have never been put so out of my element before. There were two (plus some smaller) incidents where I had to give things up and roll with the punches, even if I didn't want to. The first incident happened the moment we got to the camp. We drove into the compound and parked at the end of a long row of SUV's. Leibow Lodge was at the other end of a grassy field. Ronin recognized Melisa, one of our former therapists, so he ran over to say hello. I exited the Pilot with just my purse. No diaper bag. No food bag. My first error. We were led to the lodge where Maria from MGB Services checked us in, gave name tags, and gave us the weekend agenda. We arrived just in time to start walking to the dining hall with everyone else. Thinking that it wasn't that far from the lodge we started walking down a gravel path that gradually got dimmer. Denis had his flashlight as well as others, but the further away from the lodge we walked, I knew that going back to the car for our food bag would leave us screwed. We had to roll with it and hope we could find something for Ronin to eat at dinner. The dining hall had eight long tables set up for families and we took up one table. We were also assigned Melisa and a girl named Sarah to help us out this weekend. When the family-style dinner was open for us to bring food to the table, I saw that there were hamburger buns for the chicken patties. That would be Ronin's dinner. There was also some grilled chicken that Denis cut into a few pieces for Ronin to eat. I saw no signs of redness on Ronin's face so ultimately we were in the clear. But I felt so stressed out not knowing what food would be available. I noted that a microwave was sitting on a table with the coffee and that eased my fears of not knowing where we'd zap chicken nuggets for future meals. As a group, we walked back up to the lodge and were set to put our kids to bed. A bevy of volunteered helped Denis go back to the car to haul all our stuff back into the lodge. Meanwhile, I took the kids to our room, #3. Inside it had THREE bunk beds. And a garbage can. Can you imagine how big the room was? I pegged it at 10 x 13 (minus the cathedral ceiling). Pretty small for a family of five, three of which would not be allowed on the top bunks, but it was nine o'clock so getting settled and readying the kids for sleep was the priority. The communal bathrooms had three sinks, three toilet stalls, and three shower stalls. No tub. Our kids would have to be showered, unbeknownst to them. I was so incredibly anxious (and when I get anxious I get crabby, snappy and stressed out) that I felt like I was at deafcon one trying to figure out who would shower first, would they go peacefully (um, definitely NO), and how the heck would these kids fall asleep in a strange place? A text from my sister helped calm me down when she said to reread books and sing songs, show the kids that going on vacation is not unpleasant. That doesn't mean I immediately became serene and happy, but it put things into perspective. If I was panicked, the kids would feel my panic. After Audrey was showered, I announced it was time for stories, song and sleepy time. We had brought the pack-and-play for Audrey to sleep in, thinking she may fall off the bed if not in a secure spot. Thankfully she saw her blanket and [new] pillow and didn't fight being in a portable crib. I read a few stories and prayers, sang the good night song, and did my little exit ritual with Nikko so that he would know sleep was next. I lay next to Nikko while Denis parked next to Ronin. Audrey was at the foot of Ronin's bed. Ronin was the last kid to fall asleep.

I went to the lobby later to relax away from the sleeping kids, but bumped into Maria in the bathroom. I told her that I looked at our schedule and noticed that there were kid activities and some adult free time. "If you guys are going to separate the kids from us, I have NO idea how you're going to do it," I said to her fearfully. Maria grinned, patted my arm and said, "They're going to be all right." I was truly baffled. Nikko may become a puddle of screams. Audrey wasn't even two years old yet. And Ronin? His mood could turn on a dime. How would we be able to go to the adult workshop without the kids?

The next morning after breakfast (every meal happened in the dining hall), it was raining so a planned hike was a fail. Instead, we went to a rec hall where the kids were given a hockey stick and an aide. Ronin seemed genuinely proud and excited to hold a hockey stick. Nikko was accompanied by Melisa and seemed to giggle and laugh when they ran with the stick to hit a red ball. The floor of activity was crowded, but the helpers opened a second room next door where the smaller kids could safely play, and feel safe as well. Ronin seemed angry and frustrated that he couldn't get to the ball with his stick so he abandoned his stick and joined us with rubber balls, floor cones and bean bags. After the hockey, all the families convened in the lodge lobby (about eight families). Maria read the agenda, the aides and helpers started grabbing the kids' hands, and the masses started walking out the door. Nikko turned back to us with some slight hesitation, but Melisa took his hand and kept ushering him out with her. The kids kept walking forward. No protesting, not even Audrey. Denis and I kept watching through the lobby window at the kids walking off with the aides, expecting someone to bolt back toward us. It didn't happen. No one called on the radio to say the Umali kids were coming back. We were stunned and happy at the same time. We sat in the lobby while Linda H. gave a talk, followed by another speaker. The adult free time left us wondering what we should do with an hour+, but we just talked more about future plans. We talked about picture schedules and how that could really help plan the entire family's day. I hope to make a better stab at putting one together that would show what the kids should expect throughout the day. I'll start with a PEC of mealtimes, like breakfast, lunch, snack and dinner. Then I'll fill up the holes with activity PECS.

The kids came back and joined us for lunch. It was after lunch that some activities were scheduled to take place at the lakefront, activities such as canoeing, boating and fishing. Immediately I knew that I wasn't going to ride a boat mainly because I get seasick, and when I feel dizzy and nauseous then my mood falls apart. We walked/hiked to the lakefront and my heart sank. At the end of the grass was a big stretch of sand, and beyond that were the row boats and canoes. Guides were handing out life jackets and preservers, stating that the kids could only go so far up the sand without having to need to wear the life jackets. Would Nikko just want to splash in the water? Would he want to go swimming? What about Ronin and Audrey? What was killing me even more was that I didn't have a change of clothes for these kids if they decided to go into the water. I didn't even have a towel in my backpack. This excursion was totally unexpected to me and I was grossly unprepared. Water-type activities had appeared on the schedule, but with the up-and-down weather I had erred on the side of Plan B, not taking seriously the notion that our kids would participate in water activities. I was on high alert and could feel stress coursing through my blood. I didn't want the kids to get wet and I wasn't thrilled that they would be covered in sand, but there were few options other than turning around and walking away from the scene. We were here to participate and have a good time, and perhaps my family wanted to try out the boats. Begrudgingly I announced to Denis that the kids could play in the sand (damp due to the rain). Do you think the kids hesitated? Nope! They quickly congregated around a large metal bowl filled with shovels and scoopers and began to dig. We took off the kids' socks and shoes and rolled up their jean cuffs. I had some orange pylons and made a perimeter around us. If the kids went near the water, they were required to wear life vests. And since my kids love the water, they didn't stay in the sand for very long. We had to put life vests on each one. Then they started dipping their toes in the water beyond the seaweed on the shore. My internal alarms were ringing like mad because I didn't want these kids to attempt to swim, especially Nikko. Toes turned into knees and suddenly all three kids were wading in the water, jeans cuffed at the knee getting wet. I tried to carry Audrey up to the sand but she started screaming and raced back into the water. I put my hands futilely on top of my head and made an "AAARRRRRRGGHHHH!" sound while looking up at the heavens. It was a moment that I had to give up all my power and just let things fall where they may. Expect the unexpected. Could have been a cathartic moment if I weren't already stressed out watching the kids so they didn't fall into the water. Nikko and Ronin expressed an interest in going into a row boat so Denis and an aide named Adam got a row boat for their eager crew. And they were fearless. I thought Nikko might want to wriggle out of the boat so he could swim in the water but it didn't happen. I thought Ronin would start to balk in the middle of the lake that he wanted to go home, but it didn't happen. When they came back to shore, Nikko started strumming the water with his hands, edging a little deeper. Adam, who was a trained therapist, rolled up his jeans and played with Nikko in the water. Bless his heart! When it was time to leave the lakefront, there was a hose near a grassy clearing that we were able to use to wash little feet and hands. I felt bad that the kids had to walk all the way back to the lodge with wet jeans, but it couldn't be helped. Lucky Audrey started whining that she wanted "up!" so she got to be carried. We got to change the kids and reassemble them before the kids were whisked off to another arts and crafts project. We started doing some packing. The kids were also having a separate dinner from the parents so that at 6:15p all the adults sat around a candlelit table in the dining hall and enjoyed the last night without kids. It was a lovely touch.

Back at the lodge we met up with the kids and I found out that the last event of the evening was a campfire and s'mores at...the lakefront. I wondered if I'd have to bring a towel and change of clothes again! It was really dark so the kids couldn't even see the water. However, there was now a fire pit to contend with. The kids were good about hanging back with us on some benches. Tambourines and maracas were passed around and campfire songs were sung. Sticks were passed around to roast marshmallows and press into chocolate on graham crackers. The aides helped Nikko and Ronin with their marshmallows but they still turned out undercooked. Ronin's s'more was just cracker with marshmallow, no chocolate since it could have dairy in it. When we were all back in our rooms, we gave the kids much-needed showers. There were no protests this time around and each kid fell asleep pretty quickly. Denis and I were able to convene in the lodge lobby with some other parents and reflect on our times.

The next morning, our last, was another arts and crafts time for the kids and final packing for us. We had time for an all-family hike, some sports time to kick around soccer balls and play on a basketball court, and then the final barbecue lunch. Before we left, Maria made sure that we got all the arts and crafts that the kids made, including decorated flower pots, pine cones, a picture frame, and tie-dye t-shirts. What I loved about these activities was that the kids got to do something new and different instead of sitting around the house watching TV all day. On our way home, all three kids fell asleep.

I am so grateful to MGB Services for having us at this camp retreat. I was shocked to hear that it was their first one. I thought it was their sixth annual camp retreat because everything ran so smoothly. Jenna was supposed to be another aide at the retreat but she left the first day, sick. I heard that she had done a lot of the planning, so it's a shame that she wasn't part of the event. There were about eight families that attended but we had the youngest children. Still, the staff was able to be flexible in order to accommodate even Audrey. I was so proud of my kids because they went willingly, for the most part, whenever they were led away to do "arts and crafts." They were real troopers and were able to go with the flow. It taught me that maybe I keep the kids inside the house too much. :/

Stretching attention

From Nikko's 9/15 school report:
OT - Lots of sensory activities - then worked at table - drawing O's, snipping with scissors & squeezing toys.
I forgot how important having OT was for Nikko last year. They would pull Nikko during the first few minutes of class and do scooter stuff in the hallway, the swing, fine motor threading and lacing and dot markers. I lamented the end of school because I didn't know if I could keep up with home OT. Now that Nikko is getting some kind of input, from school in general and especially with OT, I feel a bit more at ease.

That being said... Nikko is fully into a whiny mode that makes me want to stab my eyeballs and tear my hair out. It is very bad. He started out the morning this way, whining in a high-pitched squeal. I asked him repeatedly what he wanted and it took six or seven tries before he said, "Pop tart?" The whining dotted the morning landscape and ceased when Kathy came for therapy. He had a good session and she told me that he only started whining at the end when they were cleaning up the play doh. School came and went. When I went out to meet the bus, both Nikko and Ronin were awake in their seats for once, both grinning when they saw me wave at them. Inside, Nikko started his whining once again, for things that he shouldn't have: cheese puffs (I gave him some for snack), ice cream sandwiches, pizza (it wasn't cooked yet). I really wish I didn't have to start my day with Nikko's whining and end it as well with Nikko's whining. Encouraging him to Use His Words doesn't stop his whining. Shrieking back at him doesn't make him stop to wonder what the heck I'm doing. If it's a maturity thing, I really hope he grows out of it quickly. I think giving him more vocabulary will help, so I fully intend to bestow more flashcards on him. I bought a rather expensive set of word cards from Lakeshore Learning that is waiting to be opened, but I'm not looking forward to Audrey coming up and grabbing at the colorful cards, bending some in half, getting them greasy. I also feel like the small window of attention from Nikko closes so quickly. It's hard to grasp his focus if he is not holding the object or looking right at me, and even when he is, the moment is fleeting within seconds. Sustaining his attention and focus is a big concern of mine for him. I was just thinking that singing songs helps because he would have to remember words and the tune together, like the ABC's or 123's. I know he's capable of singing a long song because he was able to sing the Thomas the Tank Engine theme song, including the middle part where they name each train (Thomas, he's the cheeky one....).

Tomorrow we are going to a family retreat sponsored by MGB Services. I have lots of packing to do, and wonder how the kids will be able to sleep in a totally different environment. It will be an adventure, but we'll know from this how adaptable the kids will/will not be.

No, not swing...

Ronin, let's go pee pee in the potty.
No, I don't want to.
Why not, Ronin?
I'm scared.
What are you scared of?
I'm scared of the poo poo/I'm scared of the red bucket/I'm scared of the toilet.
I'll be with you the whole time. There's nothing to be scared of.
I don't want to pee pee.
C'mon, Ronin, it will take two seconds. Let's go pee pee in the potty.
I don't want to.
Ronin, I don't want to clean up the floor. If you pee pee in your underwear then I have to clean up the floor because you will leak. Let's go pee pee in the potty.
NO. I don't want to.

You see the pattern here? Ronin does not want to use the potty. I enticed him with stickers, and even resorted to offering him an Oreo. He refused. BUT... before getting ready for school today he trotted alongside me to the potty and he peed, proclaiming that now he gets a sticker AND an Oreo. I praised him heavily, sang the Pee Pee Song, and after washing up I dutifully gave him an Oreo. Five minutes later he was in the bathroom, naked from the waist down, trying to sit on the toilet so he could get another Oreo. But he couldn't make himself pee or poop! Well, no pee/poop, no Oreo. He was pissed.

Oh, and for the past two days, Nikko has been "obsessed" with his "thing thing." We sit him on the toilet while Ronin gets a bath. Sometimes I keep Nikko company, other times I try to get a jump start on the dishes. It's not an unfamiliar thing to him at all, but for the past two days he's really been studying himself down there, poking and pushing it at all different angles. Last night he stood in the tub while Denis bathed him and would arch his back. I almost expect to hear the word, "SCHWING!" like in the movie Wayne's World. I suppose I should be congratulating him on another stage of self-awareness, but even while I was changing his diaper a few times today Nikko was attempting a from-the-ground schwing. The topper was that in between kid baths, Nikko was running around with his hand down the front of his diaper. I'd turn to see him and shout, "Nikko! No hands in pants!" He'd retract and then run away. I know this is all probably quite normal behavior, but it's doubly hard to explain what is happening to him if he can't communicate back with questions, or even process what the heck we'e describing. I dutifully put this ball in Denis' court, for the meantime.

Where's that hole puncher?

I've been really stressed out lately, mainly over Ronin's potty training issues. Then there's Nikko's constipation issues. Getting the kids to the bus on time. Waiting to see if the bus company has figured out their routine for coming home (4:20-25, looks like. Except Fridays are supposed to be 4:30, she told me last week). Audrey's attitude. It came to a head today when I stood in Nikko's room looking for the handheld hole puncher and I couldn't find it. I searched a few drawers in my room and ended up staring at the bookcase in Nikko's room that was crammed with STUFF. I started pulling out construction paper, glue sticks and pens, and told myself that if I had put all the school supplies in one box then I would know where the hole puncher was. But I didn't. And I got overwhelmed. I think I got meaner and more impatient, bellowing at Audrey for getting in my way and not listening to anything I told her (ordered her) to do. Nikko had peaches for snack and kept asking me for more, beyond 5pm and I was getting distraught because dinner was supposed to be at 6pm. I refused him and tried to distract him but he was so damned relentless that I ripped open a snack pack of peaches and left it for him while I ran to his room to stare hopelessly at the bookcase again. I broke down, which hasn't happened in probably a month, and lamented on how I couldn't get things in order. I had a pity party for a few minutes, but pulled myself together and started putting school supplies in a box. I still haven't found that hole puncher.

Clay observations

There is no school for the kids on Mondays so today we were homebound. With Ronin's potty training in progress I don't really want to leave the house for an extended period of time, without a travel potty seat (I just ordered one, will get here by Thursday). The kids were getting used to the living room with no floor mats. I'm always so fearful that someone will fall backwards and hit their heads on the floor. There was definitely some roughhousing, but nothing that drew blood. At one point after lunch, the kids were sitting at the kid table playing with clay. I took out the camera and filmed a few minutes of their interaction because Nikko was babbling to himself. In a small, twisted way I wanted to capture some of Nikko's current mannerisms against the backdrop of Ronin and Audrey's NT behavior, with the hopes that in the [near] future Nikko will NOT be exhibiting these mannerisms. Nikko was hunched over his mound of clay, sticking little clay toys into it, but also babbling to himself, looking up at the ceiling, shaking his head slightly, and twisting his body for no apparent reason. Meanwhile, Ronin was proclaiming that the green clay he pushed into a blue car mold was "dirty." Audrey was the parrot that mirrored his proclamations. A cute scene, but skewed because Nikko was there - - but not. Throughout the day Nikko would request "Tickle" from me, whether or not I was in the mood. He was also about 30 minutes early for each meal, asking for a cheese sandwich. Finally, during snack time he glanced past me in the fridge and saw some peaches in plastic cups, the kind he got during summer school. He wanted some, then his siblings wanted some, so everyone was enjoying a sticky mess for snack. Nikko wanted more than his siblings, however, and even though I announced that snack was finished and there would be ABSOLUTELY NO MORE, Nikko was able to ask me verbally and using sign language, "I. Want. Peaches. Please?" OK, he had four, maybe five cups. At least it was fruit. Right?

Ronin had one accident today, after breakfast. He announced, "Mommy, I have a poo-poo." I groaned and quickly ran to the living room to scoop up Ronin and bring him to the bathroom. Luckily, there was no puddle or anything leaking from his shorts. But he did have a solid poop in his underwear that I dumped into the toilet. I told him he shouldn't get his underwear dirty and to tell us before he actually poops (or pees, for that matter) so we can help him go to the potty. That's what I'll be repeating again and again for a long time, I'm sure. Ronin had no accidents the rest of the day. I would tell him at hour-ish intervals that it's time to go to the potty. Let's hurry up, it will only take two minutes, then he can go back and play! My debate now is whether or not to put him in underwear for school. He will be gone for 3.25 hours. They will take him to the potty once. I'll make him go right before school. Will it be enough? Should I send him in a pull up instead?

Why Whine?

When Ronin whines, he sounds like, "Moooooooooom meeeeeeeeeeeee!"
When Nikko whines, he sounds like, "Gaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa gaaaaaaaaaaaaaaaaaaaaaaaaaaa!" and it's at a very high-pitched frequency and it grates on my nerves. I just wanted to make this distinction because Nikko's whining is different from Ronin's. He also does it when he can't communicate well. This morning Nikko was automatically whining once we got into the living room after waking up. I tried to stay calm and ask him what he wanted. "What do you want? What does Nikko want?" I asked him this over and over, sternly or lightly, didn't matter. Nikko kept whining. Gaaaaaaaaa...

And then, very quickly, he said, "Watch Thomas?" and went back to Gaaaaaaaaaaaaa.

I immediately praised him for vocalizing something and put in the Misty Island Rescue DVD, a new one I got in the event that the kids melted down (they did, last night). This made him happy and quiet for the duration of the movie. Until it was time to eat breakfast, that is. I'm really at a loss for why he is whining so much. Is it the pop tarts? Could it be his diet again, even though the only dairy he's getting is in his cheese sandwiches?

P.S. I don't even want to jinx us, but today Ronin wore underwear. No pull up, no diaper. He was incredibly resistant to using the bathroom at first. We wanted to pull out our hair. But by lunchtime he was more compliant. He didn't have any accidents UNTIL after dinner and before bedtime. I went too long without taking him to the bathroom and he had an accident on the mats in the living room. Tonight, I took out all the mats (will clean them tomorrow) and we're hardwood floor again. I do NOT want to go back to diapers with Ronin. We'll see how it goes.....

Oh, and today he pedaled on a tricycle for the first time. Great firsts for Ronin today!

Birthday party @ Kohl's

Today was Jovy and Max's birthday party at the Kohl Children's Museum in Glenview. Ronin and Nikko were excited to go to the Car room, but Ronin got attached to a little fire engine and was not willing to share it. Nikko was whiny from the minute we stepped into the museum altogether. We had to walk past the Car Room to get to the party room way at the end of a hall and Nikko was pulling at me hard to go back to the Car room. The boys enjoyed racing cars along a race track while Audrey puttered around the room with no real destination in mind. Nikko and Audrey were interested in the walk-in car wash for its flashy lights, roaring motor sounds and whooshing air ducts. We headed back to the party room in time for the birthday cake blowing. Nikko was easy to please with a piece of cake or a cupcake as long as it had frosting on the top. He was also receptive to potato chips. After the guests dispersed we hung around just a little bit longer to push some buttons and turn some gears. I spotted and ran into a good friend of mine from college, Ginny. She was there with her husband and two boys and we chatted briefly but happily. She's the kind of person I wish I got to see more often, or lived nearby, or just plain old hung around with. We returned home and I tended to the kids for a short while before getting ready to hang out with my girlfriends for our GNO. The kids didn't make a big scene when I left, but I heard from Denis that they were pretty bratty with each other and did lots of crying.

My girlfriends and I went to The Capital Grille, a wine and steak place in Oak Brook. Wendie called it a five star restaurant with a five star price. Still, we had dinner there and followed it up with a chat at Barnes and Noble. When the girls dispersed for home, Dinah was willing to stay out longer and hang out with me. I suggested we go to a hotel bar/lounge so I motioned to The Marriott across the street. We discovered a cute lounge with blue sofas and mounted flat screen TVs on the wall. Dinah and I had some great conversation, and I also listened to her incredible survival story regarding her cervical cancer battle. We talked about her holistic doctor and how to save by using coupons. Yes, exciting topics. I'll elaborate more tomorrow, but for now I'm BEAT!