Sunday, August 23, 2009

6 Flags Fun

Because of Hurricane Bill, the weather is very hot and very humid here on the coast. Saturday, we went to the beach to enjoy the wonderful surf (see previous blog). Sunday, we decided we needed to find something cool and indoors, so of course we decide to go to 6 flags (Note: neither cool, nor indoors). We have passes from 6 Flags in CA, where Monster enjoyed many, many action packed days. These passes are good at all 6 flags (including our parking pass) so we decided to schlep up to Massachusetts to visit 6 Flags, New England.

The trip up was relatively uneventful, but as soon as we got there, it started to rain. Summer showers in the midwest and east coast can be fairly heavy and warm. That was the case on Sunday. Since Monster despises his shoes or hair wet, I was fairly nervous he would have a total meltdown. As keeps happening these days, he amazed us. He let us put a hat on him and instead of freaking out over the wet shoes, he actually decided to play in the puddles.

As is typical with summer storms, it was over before the end of the first Thomas the Tank Engine ride and the day got hot and steamy. We found rides he had ridden in the past and because of the rain, he could get on them really easy. We let him pretty much decide where he wanted to go most of the day (with some guidance from us when he was too overwhelmed.

This 6 flags was also a water park, so we eventually headed out that way to cool off. Off course, he was fascinated by the water slides (but didn't want to try them). One thing he totally loved, was a water obstacle course (for want of a better way to phrase it). I've posted a video below of his final crossing. The first attempt was by himself, and he ended up in the water almost immediately. Mr asked if he could help in, and they said sure.

The day was hot, humid and exhausting. But fun (and it only cost us the money for gas since we bring our own food ;))

Saturday, August 22, 2009

The Happy Parts of a Hurricane

As a child of CA, especially one in college during the 1990's where many of us had a deep philosophical connection to the zen-like Patrick Swayze in Point Break, I knew that hurricanes produced amazing waves; excellent surfing conditions (though dangerous). Seeing as I was a Valley Girl, not a surfer, I didn't really grasp what that meant. Until to today.

Today was the first annual beach festival in Newport, RI. It was at Easton beach, a small spit of land between the ocean and Easton pond. The festival featured free slides on the water slide and reduced cost bumper boats along with great food (that we missed because Monster was ready to leave before the food was ready to be bought, oh well, next year) and of course, the beach. Because of Hurricane Bill, there was no swimming allowed on the beach. The waves were not only huge, but very strong with a powerful undertow. I don't think I've ever seen waves as high nor an ocean as turbulent as that. I realize that many others have seen the seas in even more dramatic conditions, but this was MY first.

We decided to look around a bit before playing in the ocean. Since there was no swimming, we didn't think we would get very wet and wanted to see what else there was. Walking around, we stopped by the nice playground, the blow up water slide (just an inflatable slide about 18' in the air with flowing water, the slide didn't end in any pool) and the bumper boats ( a handful of blow up boats with small motors in a pool about 25' across and about 2 feet deep). Monster was curious about both of these. First, he watched some kids go down the slide and then wanted to go on the boats. Ok, he didn't actually want to go on the boats, he wanted to go swimming in the "pool". The awesome ride operator let us see if Monster would get on before we bought a ticket (rather than waste the money). As expected, Monster wouldn't get on the boat.

He also wanted to go on the water slide. It was so steep, I didn't think he would, but the wonderful ride operator let Mr. walk Monster up the ladder to see if he would try it and kept the other kids off when Monster and Mr climbed back down the ladder. Even though Monster didn't go down, I was impressed that he would go up and try. If it was a little less steep, I bet he would have even gone down!

After try something new (and failing, in his eyes), he wanted to go into the water. Mr and I didn't change into our suits, thinking we wouldn't go in that deep (we were idiots), but made Monster change. At first Monster would hold up his trunks, like a skirt, so it wouldn't get wet. He was fairly timid, considering he and Mr had gone to the beach several times with much success. It is so funny how he will do anything to avoid getting wait and then throwing himself completely into the water when he finally does get wet! We hung out in the water for a while (with me finally getting my swimsuit on and Mr. giving up and swimming in his shorts ;)) before Monster decided he wanted to try something new again. It was as if he had been thinking about things and finally came to a decision, but he suddenly took off toward the bumper boats.

Mr and I eventually caught up to him and he indicated he wanted to go on the ride. I got down and made him look into my eyes and asked him if he wanted to go into the water or the boat and he said "Water", so I assumed he wanted to go swimming in the "pool". He was quite insistent, and after a while he did say he wanted in the boat (when presented between the boat and water), so Mr went to get tickets while Monster and I got in line. There were several kids ahead of us, and Monster was quite patient. Every time I asked "Boat or water" he would answer boat, so we stayed in line. Finally it was our turn. Monster climbed the metal steps and got to the edge. the very nice ride operator held the inflated boat steady and, shock of shocks, Monster tentatively stepped onto the boat. He gingerly climbed in, and after some help, sat down and was off. He didn't seem too keen on actually steering the thing, but he stayed seated for the duration of the ride and got off without any meltdowns, tantrums or problems. I was so very, very proud of him! The entire experience couldn't have been easy and he did great.

But damn, what a time to be without the camera! We had it but I had put it in the car when i put my suit on since I didn't want to get it wet.

Soon after the boats, we packed up and went home. Monster has a problem with wet clothes, and did have a bit of a meltdown when I wouldn't change out of my suit fast enough for him. All-in-all, though, it was a really fun day. I'm so proud of the little guy. I know the entire move has been tough on him, but he's been a real trooper about everything. Part of me wonders the move made him feel so powerless that he decided (consciously or not) to become more assertive and forceful about getting his own way, along with being a bit more fearful-wanting to control everything around him, even Mr and I.

Anyway, here are some pictures of Monster enjoying the surf:






You can see how rough the surf is from some of the pictures. The amazing part is the photo of Monster sitting in the water with the tide rushing out. You can see how fast the water is rushing around him.

Saturday, August 15, 2009

Angels on Horseback

While we lived in Pacifica, Mr. found a great place to take Monster horseback riding (http://www.halleckcreekranch.org/). I've posted a video from there. The folks there were awesome as were the horses. Monster enjoyed it and during his time there he learned how to wear a helmut and started wearing goggle while swimming. The price was perfect (free).

So one of the things we needed to find when we moved out here was a new place to take Monster riding. Mr hit one out of the ball park with this one.

He found a fantastic facility in Exeter called Angels on Horseback. This place was amazing.



It was a hot/humid day, and Monster was already a bit cranky. When we got there, there was a simulator (The call it an Equicizer, from their website: "The Equicizer, named Oreo, is a mechanical horse which perfectly simulates riding a live horse) That Monster got right on. While on this thing, we put a safety belt on Monster (this dohickey that went around his waist that the volunteers could hang on to to prevent him falling) which he had never worn before and which he wasn't very happy to wear. On top of that, we tried to put on his helmet. He hadn't been on a horse in a few weeks, but we had been taking him bike riding to keep him use to wearing a helmet. Even so, Monster wouldn't let me put the helmet on him for more than a few seconds (literally 2 seconds and then he would push it off). I was getting pretty apprehensive about things at this point; I mean, he has had a lot of changes in his life and he hasn't really gotten his sea legs, so to speak. However, this is when Mr. really shines, in my opinion. He has such a good feeling for how far we can push Monster. I'm a lot more skittish than he is and will back off faster.

If we had followed my instincts, we would have missed a fantastic experience today. I doubt I can fully describe what a wonderful place and experience this was for us. Both Mr and I were fighting back tears, the good kind.

But I'm getting ahead of myself, a bit. From the start, he was trying to take his helmet off. He really didn't want his helmet on. He really, really, REALLY didn't want his helmet on. He was crying, biting his hand, trying to take the thing off while we got him set up on the horse. The volunteers were absolutely fantastic about re-directing his hands back to the handles on his saddle. So his first ride began with him being lead tearfully off on Taz.



At Halleck Creek, a volunteer would lead Monster around the grounds a bit. A pleasant afternoon ride. Angels seems, to me, the next step. This ride is not around beautiful ranch grounds, but through a series of activities. First, they took Monster to a mailbox where he opened up the box and took out a magazine which he then carried to the next mail box, where he put it in (and raised the little flag thingie). Next, he got to play basketball from the horses back (see above), weave through poles, placing hula hoops around them, threw bean bags, etc. It was a complete therapy session! He had to reach, stretch, speak (answer questions), use different textured balls-OT, ST and hippotherapy all in one.

And this was all volunteers! Wonderful, knowledgeable, patient volunteers.

This will sound trite and cliched, but they really were Angels!

Wednesday, August 12, 2009

Bad Mommy-I go back to work

Since the move, Monster has had two huge problems.

1. He hates to go to bed. We've had sleep issues in the past, really horrific battles at bedtime, which have gotten much better recently (before the move). Some days are better than others, but it's no where near as good as it was before the move. He tries to be charming, he gets very wired. He does whale song (a series of vocalizations he knows makes me crazy). I watched him the other night start whale song every time he would doze off a bit. I suspect it is a fear of going to sleep not knowing what changes will result when he wakes. Some of it is the weather (hot/humid, loud air conditioning); Some of it is just the strangeness of a new place.

2. Clinginess and staying home. He has always been fairly well traveled-it was nothing for us to drive an hour and a half for him to go to 6 flags; heck his horseback riding was an hour+ from our house, no sweat. Since we've been here, he doesn't like to leave the house much. I suspect this is because he is still scared that we are going to uproot him again. He is both trying to stick to what he considers known and his as well as preventing another upheaval by not leaving. Before the move, he was sleeping part of the night in his own bed and even after he climbed into mine, he would sleep a part from me. now, he is back to my bed completely and attached to me like iron on magnetite (geek reference). The clinginess is tough for me. After over 6 years of it, I'm extremely touched out. I'm tired of sleeping with him on top of me. I have pinched nerves in both of my shoulders that result in me waking up with numb hands, my back is always out of wack.

In addition to the move anxiety, I started back to work. After having Mommy home for the past 4-5 weeks, Mommy is gone all day (leaves before he gets up and gets home an hour before bedtime). Tonight, he wouldn't even look me in the eye. We sat for about 15 minutes, me holding him on my lap asking him to look at me (which usually gets him to look me in the eye) before he would look up and he only did that because I told him he couldn't play on the computer until he did. I should have known that was coming, he turned his back on me when I took over his bath time.

This is increasing both the bedtime problems and the clinginess. When he was much younger, he would make me sit on the couch (if I got up, he would lead me back and push me down or meltdown if I didn't) and then stand in front of me with his back turned when I would get home from work. He has never liked me working, but we've always liked to eat and sleep under a roof, so off to work I go (not to mention I love my work).

All of this also makes Mr's job harder-in addition to him dealing with setting things up here regarding services, school, activities, etc.

His language, for the most part, still remains pretty good. He is now telling us when he has a bad tummy or an owie (which he has many of these days because of rough play). He even asked for owie medicine tonight (though he wouldn't take it). I try to hold on to the fact that though he may retreat more often than we would like into his Cartoon world, he reciting things out loud to us, which suggests a confidence in his own speaking ability.

Things are going to get worse, before they get better, but I have to believe they are going to get better.

How does one learn patience?

Sunday, August 9, 2009

The Move, Part 3

Sorry for the interruption, but we only have one real computer (it's pretty tough to blog from the iPhone, though I've done it in the past) at the moment and Monster is having a blast playing games on it.

We had thought we had a place all set up for us in RI before we ever left CA. However, the owner decided he didn't want a dog on the property and Mr. had the un-enviable job of finding us a new place to live in little to no time. He did spectacularly-he found us a rather quirky place not to far from the water. It has a finished basement (with kitchen and spare bedroom), a huge deck and a beautiful open backyard that came with a tree swing and swing set (that we have added a slide to since moving in).

Move-in day was extremely hot and humid. We started out late; both the owner and the moving van was here before us. Monster was a trooper-playing in the house and deciding on the downstairs as "his" place for the day. He also fell in love with the outside swing. IN fact, he has tried to sneak out several times (and succeeded a few heartstopping instances) in order to get back there and play. We seem to spend a lot of time back there in the mornings rather than his playing with DVDs.

Since moving in, Monster has had a difficult time of things. As usual, it manifests in his bedtime routine and sleeping habits. He has never been an easy kid when it came to going to bed. He and I have had some epic battles in the past when it has come to sleep. Recently (as in before the move) his nighttime problems seem to have subsided quite a bit. However, the move seemed to have instilled a whole new host of problems.

One thing Monster has been doing lately, which is both pretty remarkable and difficult to deal with. Monster has taken to reciting entire Go Diego Go episodes. I realize that in the scheme of Autism, that's fairly typical, but for Monster, he hasn't done this before (partially because he couldn't or wouldn't speak) and it is pretty cool to hear him utter entire sentences, even if he is just is reciting something. On the other hand, this is just another way for him to tune out the world. He seems to start reciting things when he is either upset, or overwhelmed or doesn't want to listen to us, which these days is often.

I realize that set backs are going to happen, especially when I've completely turned his world upside down. So I'm trying to look on the bright side of things. He has found another way to check out from us, but at least he is speaking when he does it.

Hopefully he will settle in more and get more comfortable with the new place and we can build on this.

Saturday, August 8, 2009

The Move, Part 2

When we landed after the traumatic flight, Monster was VERY happy to see Mr. He tried to run the entire way to baggage claim; I tried to prevent this since I was hobbling with a bad back.

He ran right into Mr.'s arms and I went to find the luggage while Mr. tried to get Monster to drink some water (flying is so dehydrating, isn't it?). Ok, got luggage, found car (where the 4 legged monster was waiting for us, I missed that mutt!). It's after midnight, local time, but internally for Monster and I it's just past 9:00, near his bedtime but not really past it. Monster had a tough time settling down, but eventually went to sleep.

Unfortunately, the next few days weren't that much fun for Monster and I know it pushed him to the limits of his control. All-in-all, he did great. Saturday was our first full day in Rhode Island and Monster was in a strange place-that luckily had a pool. We got up, went out for coffee and a trip to Whole Foods for Monster's food followed by a drive around the island that was to be our new home. It was very hot, very humid. I was having flashbacks to that first miserable summer I spent in Pittsburgh before graduate school (not a pleasant memory for me).

The Island is quite beautiful. We chose this place because of the wonderful things we had heard about the school district in addition to the attraction of living in a small town where people would be able to really get to know us, and Monster. One of the more difficult things for a family dealing with Autism is the isolation. Even though we lived in a fairly populous place, Bay area of California, it was very difficult to really get to know people. We learned fairly early on after Monster's diagnosis that his behavior deteriorates when I spent long hours away from home, so free time wasn't available to follow outside interests. Because Mr was the stay at home parent, it was harder to connect with other families-there is still a large prejudice against stay at home dads-more so than there is against women in engineering these days. Our main circle of friends (our wonderful, caring, supportive, funny circle of friends) were families with children who had special needs. Which, on the one hand, is great because they understand you, what's going on with you, and to some extent your child (no awkward explanations, no weird staring, no uncomfortable silences as someone tries to figure out if you are someone to be pitied or just a bad parent). On the other hand, they have the same restrictions (or the same type of restrictions) on time, money and finding a baby-sitter, so nights out without the kids were few and far between and nearly always filled with discussions on our fight against the District or State.

This isolation is why we, foolishly or not (only time will tell), chose to move somewhere where there was a tradition of, if not acceptance and tolerance, but of knowing your neighbors. The kids we hope to run into at the playground, should be the same ones he will go to school with. His education will no longer be segregated to a campus where he won't meet neuro-typical peers, etc. etc. etc. etc.

Sorry for the side trip, back to the move story.

The first day we visited the Island, Monster was already at his limit-we had gone to the store (his least favorite place) and denied him his DVD player (we don't allow it in the car except on long trips because he tends to fixate and not notice anything else around him)-maybe we were wrong, who knows. We parked to drop off flowers for someone who had helped us look for a place. He didn't like sitting around while we spoke to folks at the real estate office (which was fun because not only were they all really nice, let 4-legged monster into the office with us, but one was the PTO president of what will be Monster's new school), he didn't like sitting around while Mr and I got something to eat. After all, he was having fun at a playground before we dragged him to lunch. He also wanted to go to the library for his daily DVD checkout (which we couldn't do since we didn't have a card or any proof we lived in RI) and he managed to delete his Go! Diego, Go! episodes off his iPod (a truly useful device). Eventually, we got him back to the hotel where he was able to swim before we went out in search of dinner.

Oops-Monster just got back from playing outside (I know I haven't mentioned it, but our new house has a swing attached to a tree outside and Monster adores playing outside there). I'll finish up more later.

Thursday, August 6, 2009

The move is finally over (sort of)

Whew.

We finally got internet access yesterday so I finally get to re-connect with the rest of the world. We are mostly moved in, but still have a few boxes to clear out and some things to organize. I wonder if I'll get everything unpacked this time. When I was packing up the last place to move here, I found several boxes that I hadn't gotten around to unpacking-two boxes of clothes, several boxes of knick-knacks and 1 box of just candles.

Anyway, it's done, the move that is. I start the new job on Monday but until then, I'm just trying to acclimate myself to life here on the island. It is quite different from anywhere else I've lived. Everything closes by about 9:00 or so and there are few take out options. Both Mr and I are looking forward to more home cooked meals and quiet time together.

So, the burning question on the minds of my imaginary blog readers-how did Monster deal with the move. In many ways he has exceeded our expectations-asserting himself in many ways and communicating his wants and needs with language. In other ways, he has had a very difficult time.

The moving van showed up two weeks ago today. That morning, Monster had a speech therapy appointment-his last one for a while. His sleep habits had gotten a bit weird before we moved. I imagine it was related to the packing, Mom being home and the different schedule at school. That last day, he had a difficult time in speech. He couldn't settle down and was biting his hand more than usual. His therapist, as wonderful as she is, couldn't get him to settle down much. It's tough that his last therapy appointment was so rough. The whole day he was off. He didn't want to go to the playground. I tried to prepare him for when we got home-that the place would be empty. When we finally got home that day, he ran around a bit, going from room to room while I finished the last of the packing. It's hard to explain but I could almost feel his anxiety increasing bit by bit.

We left that night-made it all the way to Bakersfield before we stopped for the night. Monster fell asleep for a bit while on the road, but he didn't sleep long. Finally, we found a room and all of us got a decent night's sleep before continuing on to my folk's place. Up until now, Monster was doing ok knowing he was going to Nonny and Poppy's house. He likes it there; they spoil him ;)

Mr spent a day or so with us before taking off with the mutt and driving across country. Monster and I hung out with my parents, which was fun. Monster got to go swimming everyday and we even got a library card (FYI, Las Vegas gives library cards to non-residents) so he could check out DVDs everyday. We went bowling one time and he would put his fingers in the holes and carry the ball up (I'll try to upload some video when I find the right cables).

All in all, the week went by very fast and fairly easily. Monster went to bed with little problems; we worked on his writing, reading and math each day. I was a bit concerned about the airport, but not the flight.

Silly me.

I pretty much did everything wrong the day we left Las Vegas. When the car came to pick us up, I put Monster's iPod and gum in the trunk. He started crying in the car. He wanted to go back to Nonny and Poppy's house. He was great in the airport, at first. He went through the security line with little incident. He listened pretty well to me and followed directions with respect to taking off his shoes and walking through the metal detector. I found a place that I could plug in his DVD player and thought things were going smoothly.

But we were in the airport a bit too long. The noises and lights of the slot machines, the crowds of people; it was like a ball gathering momentum when going down hill. He started getting overloaded, which upped the anxiety, which overloaded him, so on and so forth. He ran off once, and a very nice lady snagged him while I ran after him. He was adamant at this point that he "wanted to go home". I couldn't get him to calm down too much and he tried two more break aways. Finally it was our turn to board, and he decided to have a massive melt down. He was screaming and crying "Won't go" he screamed over and over. He pinched me, hit me, broke away running out of the gang way-all in front of the people waiting to board the plane. A very nice lady rolled my carry on stuff for me and another nice flight attendant put our stuff in an overhead bin while I struggled with the Monster.

I took him to the very last seats on the plane. The entire time, he was trying to grab a hold of the seats while I literally dragged him up the aisle. I have never been so mortified, or terrified. When we got to the last row, he wouldn't sit down and held himself rigid, still screaming and crying. I was just finally getting him to settle a bit down, when I buckled him into his seat and he started up all over again. "Seatbelt off" "won't go" his language was doing pretty good at the moment; there was no doubt what he wanted (or rather what he didn't want). The pilot came back to talk to us. He tried to talk to Monster. Started out asking Monster's name (funny story below about this) and when I told him he tried talking to Monster (who didn't want to talk to a stranger). I explained that Monster had Autism and that he would calm down when we go into the air and I could turn his DVD player. THe pilot told me to go ahead and give it to him, which I did, and Monster did calm down. The pilot came back in a while and I could tell he was preparing to ask us to leave if Monster had not calmed down. The only thought going through my head was that if Monster got off that plane, he would never EVER get back on another plane, which would have made moving fairly difficult since I didn't have a car and Mr. was already in Rhode Island.

Monster did great, given how the flight started. I kept up a constant stream of words, telling him we were going to go see Daddy and we had to fly there to see Daddy. He kept crying for Daddy and I kept telling him we were going to see Daddy. Poor baby eventually cried himself to sleep after take off. It was ironic, between a poor night's sleep, swimming that morning and the energy it took to fight and cry for so long, Monster may have slept through the entire flight had the flight attendant not made an announcement that we could turn on our electronic devices. At this point, Monster woke up. However, he was much calmer. We took out his DVD player and he watched his DVDs the rest of the flight, while being fascinated with the sights outside the plane. He was just getting restless again when we landed. I was so fortunate to have had a direct flight. I wonder if I could have gotten Monster back on another plane had we needed to make a connection. I'm glad I didn't have to find out!

As I got up from our seats, my back started to spasm. I was sitting in an awkward position, not to mention extremely stressed and tense, for a long time. Having sever back pain, made moving difficult, but at least we were here.

Well, it's late and we have another big day tomorrow. I'll write more about the new house and his adapting to the island.


Edited to add:

One thing Monster's therapist had been working on was him knowing and saying his name as well as his age, my name and Mr's name. So when the pilot asked his name, and I re-asked him "What's your name?" He said it, all the while hiccupping and crying, but he said it. First and last name. I know he only did so because he was motivated by thinking I would let himeout of the plane if he did what I asked, but still, he did it. Later on (a few days later, as I'll talk about in another blog) a little boy asked him his age, and with some prompting, he answered 6 years old. So if his ST from Mill's is reading-he did it!!!