Random Videos of Monster this Winter

I thought it would be nice if I just posted a bunch of videos of Monster. I have blog entry summarizing the ups and downs of 2009 in my head, but it still needs some work.

Anyway, here he is flying his new helicopter. It took a while for him to have it stop when it started crashing into things, but he got it!



Here he is at his favorite bounce house place:



Playing in the snow at the bounce house on New Year's Eve:



Pushing a car up the ramp, preparing for take off.



And now he is going down the ramp. Check out the luge-like start!



Video Games


Opening Presents

Conversations, Part 2

I know I should blog about Christmas, but I just don’t have it in me. Christmas is, personally, a very challenging and depressing time for me. It is that time of the year that I feel Zach’s challenges and differentness most acutely and grieve for the childhood we will never experience together.

Instead, I would love to share some of the recent conversations he and I have had. Our conversations are unique. He doesn’t volunteer opinions. In fact, he doesn’t really answer open ended questions very well yet, so I ask him yes/no questions and he answers. I have to try very hard to keep my voice neutral and not indicate to him how I wish he would answer, but all-in-all, it’s a blast. I’ve learned so much from our little Q &A sessions. Some of it is sad, some precious, some outright hilarious.

Last night, I was asking him if he liked mommy and daddy and diego (the dog). Apparently he does (whew!). He was also sad that it was bedtime, but not scared of the dark. He likes it when I sing Scar’s parts (from Lion King), but gets’ very upset if I sing Simba’s part. Oh well.

One night while watching Snow White, he said that Snow White was nice and pretty. Mommy was nice and pretty. Zachery was nice and pretty (or rather handsome) but Daddy was not nice and not pretty. Apparently, Mr. and Monster went a few rounds and Mr. wouldn’t let him something. One night he was scared of me (after we fought the night before) and very recently I was kicked out of the room (he wanted mommy to go away, not stay).

I try to talk to him every night-ask him what happened during the day (Did you do X or Y?) what he likes, what he fears. One night he was afraid of the dark and the next night he wanted the light off. What a contrary little man he can be!
I’ll try to add some video and pictures from Christmas. Monster got a remote controlled helicopter that Mr and I enjoy a lot. Zach loves to watch it fly around and thinks it is hilarious when we can’t control it!

Babysitting, Blizzards and Birthday Presents

They called in the Winter Wallop on TV. It was the same night as my company's Christmas Party and the first time we have left Monster with someone since we moved. Through a group to which I belong, we found a great high school student to watch Monster. None of us realized that her shift was going to last as long as it did and that we would be waking up her parents at 1:00 am in order to pick her up.

She came by the night before for a walk through and to say hi to Monster. She was very impressive. She had a list of questions, some were things Mr and I hadn't yet thought of! We took Monster to his favorite bounce house the day of, and had him all ready for bed when she got here. When we got home, she said he watched a few movies and eventually fell asleep. Apparently, he woke up briefly, then when back to school. From the state of the house, he seemed to have moved from the futon (where he lays-or is it lies?-down watching his movies) to the bedroom and back again. He woke up when we got home (which was after midnight thanks to the storm-see picture above) and started crying. He grabbed my hand and said "mommy", when I answered I was there, he said "daddy" and wouldn't calm down until Mr. came in and held his hand. It was so sad and so sweet at the same time.



The snow was coming down really bad by that point and we couldn't get either the car or the truck out of our driveway, so S had to call her dad to have him pick her up. We were a bit embarrassed, but oh well. S did say she would be willing to babysit again, so it couldn't have been too horrible. Monster seemed to have come through the whole thing ok.



We woke the next morning to everything being covered in snow. The news said that Newport (the island to the east of us) got 20", so I imagine we got something near that. The car was buried and the wind was high. It was absolutely beautiful. Mr. got quite a workout shoveling us out. Monster really enjoyed playing in the snow.



Since his birthday party last weekend, we've been having him open his presents, one or so each night. This was a monster truck jump that he really liked.

The Party at Last

Wow.

We survived.



Monster's party is finally over and, man, was it a blast! I have no idea how many kids eventually showed up; I have 5 gift bags (out of 20) left, so at least 15 kids were there (and I counted 15 presents). Because of the weather and time of the year, there were also a lot of siblings at the party as well, which both added to the chaos and the fun! I suspect that, all told, there were about 20.

The day started with a twist. One of Monster's classmate's dad was ill and her mom needed to be with him at the hospital. So I had her drop the girl off before the party so she could hang with us-which was a lot of fun and a lot of work (for me). The little girl, A, was a chatterbox-she talked nearly non-stop the entire time she was with us. She was beyond polite, with great manners, but she either asked questions or talked the entire time. When she got here, Mr had just gotten himself put together and was getting ready to take off with the food and decorations. By prior arrangement, Mr was going to go over first with the stuff and I was going to show up a bit later with Monster, so Monster didn't get too wound up (well, best laid plans and all that).

I was pretty impressed with how Monster handled the entire day. When A got here, Monster was playing with his DVDs (i.e. watching the sneak peaks and selected scenes from Disney movies. A wanted to do whatever he was doing, which was cool, but he has a really hard time sharing his DVDs, so I tried to interest A in coloring or drawing. She wasn't that interested in that but saw Monster's computer and wanted to watch some of his videos (videos of him doing things). That's another thing he wasn't good at sharing (and I eventually had to put the computer away). Then she wanted to actually watch one of his DVDs, another bad thing (for Monsters. So now, I'm getting very worried that Monster is going to pushed beyond his limits before we ever got to the party. Eventually, A played on Monster's bicycle (a Smart Cycle). Monster hovered a bit, watching her, but let her play without any problem. Monster would either jump on his trampoline or walk on the treadmill. By this point, Monster had already had more 1:1 interaction with a child than he normally gets over the entire weekend.

The weather was absolutely horrific. Cold, wet, gusty winds made walking anywhere difficult. When we got there and trudged through the puddles and up the stairs to the Beach Bounce, I found Mr surrounded by several wonderful ladies, who decorated and blew up balloons while Mr charmed everyone around him.



The parents who had showed up were very wonderful about pitching in and helping us get going. Which was fortunate, because after Mr took off (to get coffee for everyone), Monster really needed help for the first 30 minutes or so. Since we had been going to this place for the past few months, Monster could do fairly well for himself and didn't need us to hover too much. At his party, he was quite insecure for the first half hour or so. He would check in with me (look for me to make sure I was watching him) every minute or so, and would come over for hugs every 5 or 10 minutes. But he played and played and played-like all the kids did.



After about 45 minutes, he needed a break, so he asked me for his iPod and played with that for about 10 minutes. One of his friends (backstory: there were two little boys that Monster knows from the sensory room at school, N and C. We were told that Monster calls them "friends" so we sent invites to them and they both showed up), N, was watching Monster play on his iPod and when Monster was done, he let N play with it-and NO ONE touches Monster's iPod! The pattern of finding me, getting his iPod (or Dad's iPhone) repeated about 2 more times. Now, I bet parents of typical kids would think it was rude of their child to go off by him/herself during her/his birthday party, but for me, I couldn't have been prouder! It was one of the first times I had seen him recognize, in himself, that he needed a break and seeking out that break and then return to the activity. In the past, he has signaled being done with a task or area (no matter how preferred an activity it was), but when he was done he was done. Sunday, he would take a little break, have some water and then go back.



Eventually, it was time to sing Happy Birthday and blow out the candles. Forgive my horrific singing voice, but this is him blowing out his candle. Mr had worked with him all week blowing out a candle after we sang to him. He was so exhausted at this point that he mainly laid down either in the jump houses or on the floor (in everyone's way).



Toward the end of his party, he had asked to go go the library, so we (Monster, his classmate A and I) did. By the time we got home, all of us were exhausted and A's mom was done for the day and came to pick her up. I think they played well together, and although she was exhausting, it was nice to have A around.

All-in-all, the day went really well. Mr and I got to get to know some of the parents. Hopefully we can hook up with some folks for playdates. However, I noticed something I hadn't noticed before. Throughout the entire day, it seemed to me that there was a hint of sadness in Monster's eyes. To me, it seemed like he really felt his different-ness, which he doesn't seem to notice or think about most of the time. It was almost as if there was an invisible barrier between him and the other kids (except, surprisingly enough, between him and N, who was also special needs) that he wanted to cross but either didn't know how or thought he couldn't.

Maybe I'm projecting too much; I'm horribly shy and have problems in social situations as well, but I really don't think I am. One of the things I'm noticing is that it was easier on him, and us, when he lived in his own world. In there, things were safe and comforting. Out here, it is weird and scary and stressful. I understand that fear quite well; I just don't know how to help him handle it. I can't tell him that kids all think he's wonderful, because that's just not how things work. At this age, sure, kids are fairly accepting. But as he gets older, or around people who just don't know him, I can't guarantee he won't be made fun of, or pushed around-he's already experienced a kid trying to keep him from playing in a public place (other kids were trying to dominate one piece of equipment)-not all kids are nice or polite or follow the same social rules and he needs to know that I'm going to be honest and real with him (which is probably a whole 'nother blog entry).

Intellectually, I know that time, patience and self-confidence are what he needs to get through this and given how far he has already come, and the wonderful support he is getting, I'm confident that he will get there. He really is a wonderful, brave, charming little boy (well, big boy now).

We had a t-shirt available for the kids to decorate for him and I thought I would end this post with a picture of his decorated t-shirt:

Monster's First Report Card

1=begining to develop standard
2=working and progressing towards the standard
3=Meeting the grade level standard
4=exceeding grade level standard

At our Parent Teacher Conference last week, the teachers told us it is typical for kids to have 1's and 2's at the beginning of the year.

Ok, here goes:

Learning Attitudes and behaviors
Respects others 2
Follows classroom and school rules 2
Works Independent 2
Works cooperatively with peers 2
Listens Effectively 1 (Joanie-sound familiar?)
Is responsible for homework 3 (yea, mom and dad!)
Manages transitions 2 (Thank you, Ms. V)
Is organized and prepared to learn 2
Shows persistence effort 1
Takes responsibility for own actions 2
Communications skills 2 (yea!!!!!!)

Guided Reading
1. Applies Appropriate reading strategies:
Visual cues 1
Phonics 2
Contextual clues 1
Self-corrects 1 (though I've noticed he just started doing this a little bit)

2. Reads with understanding
-Responds to literature 2
-Re-tells a story 1 (actually, he does do this, just in his own time frame and way. He'll tell us stories later, but we don't always understand them.)
Participates in group discussion 1

3. Fluency
-Demonstrates fluency and expression in oral reading 1


Self Selected Reading
Chooses appropriate literature 3
Attends to text during independent reading times 3
Reads with understanding 2

Working with Words
Uses known word parts and patterns to spell new words 1
Applies word building skills and spelling strategies independently 1

Writing
Generates ideas independently 2 (yea!!!!)
Communicates thoughts and information effectively 2 (yea!!!!!!!!!)
Uses grade appropriate capitalization and punctuation 1
Writes legibly 1

Mathematical Numbers & Operations
Counts fluently 2
Skip-counts fluently 1 (we just started doing this with him, he seems to sort of get it)
Reads and writes 2-digit numbers
Identifies and calculates value of coins 2
Addition 3
Subtraction 3

Mathematical Concepts
Shows evidence of mathematical reasoning 2
Identifies and uses number patterns 1
Understands geometric concepts 2

Science
Process Skills 3
Understands concepts 3
Applies concepts in written work 3

(it does this Engineer's heart proud over the Science score!!)

Social Studies
Understands/applies concepts 3
Understands/applies concepts in writing 3


There are a few more things, but that is the bulk of his report card. Now this is our first report card, and we are pretty happy about it!

Monster has not been wanting to go to school. When I ask him if school is Happy or sad, he often says sad, but I think that just means he isn't getting his way as much. He, by no means, seems to hate going nor does he seem to have any problems once we get him dressed and out of the door.

I wonder how much is related to him being different, or not fitting in. I know he knows he's different, just as I know he wants to be around other kids. I suspect he is scared a lot-unsure how to get to where he wants to be (playing with the other kids). It takes time, and he has never been very patient.

5 RSVPs and Counting-Monster's B-Day Party Saga, Part 1

I'm a total nervous Nellie, so just ignore me, but I need to rant/vent, etc. Feel free to skip this entire post. But if you do read it, feel free to let me know what I'm missing.

We have had a total of 5 kids RSVP yes, and 2 for no.

Mr. and I had decided to prepare for all of the kids/parents, which, when we sat down and counted, was 23 kids (if 1 parent per child shows up, that's 46 people plus us-I think we are insane). So the 2 noes were welcome (though they will be missed).

We took Monster back to the bounce place last weekend, and he played there for about 90 minutes, which is good and means he will have endurance for his own party (it was fairly busy, so it was a good mimic for his bday). There was even 1 or 2 bullies trying to get him to NOT play some places that he (and well, I) dealt with. Mr. was funny, after I grumbled in his ear. He said "Do you really think he cares what those other kids say?". Unfortunately (or fortunately?), Monster did care, and would follow a direct instruction (for about 30 seconds). Finally, I, another child and the kid's mother all told him that ds was allowed to play there and that he needed to share (to be clear, I and another child both told him that Monster wasn't in his way-he wasn't-and to just play around him, his mom told him he needed to share).

I still need to put his giftbags together, I'm stressing that they aren't "cool" enough. I tried to stick to things Monster likes to play with-a moldable eraser, a gummy pencil grip (on a pencil), one of the sticks that makes noises when you turn them upside down, super bouncy ball, a pack of Monster's favorite gum, some stickers and a balloon. I'm sure (logically) that they are fine, but there is that social anxiety rearing its ugly head.

The menu is set-pizza (with me making a special one for ds and one other girl who is also gf/cf), carrot sticks, raisins, chips and juice/water, coffee and soda for the parents. Mr didn't want to serve any soda, but I told him I *would* be drinking some (I don't drink coffee, he does) so it would be rude to not offer any to the parents. Monster's "cake" is GF/CF brownies and chocolate chip cookies.

We decided to go with the No. 7 candle (instead of 7 candles) and Mr is going to work with Monster this week to teach him to blow it out. We are planning on having all the kids "help" him blow it out.

Presents have been a tough one for us. On the one hand, we don't expect anyone to give him anything-times are tight and we are of the "your presence is the present" mindset. On the other hand, Mr thinks this is a great opportunity for us to see what other kids are playing with (Monster just does DVD sneak peaks, internet and his bike games) to see if they are interesting to him. When asked, I originally said "books or cars", since he does enjoy cars occasionally, but Mr suggested we ask the parents (who ask our opinion) to bring something their child likes to play with-a favorite book or whatnot. Partially so we can have something they enjoy for future (hopefully) playdates.

Also, since Monster isn't the best at opening presents, we decided to have the child help him open his/her present to him.

Finally, we bought a t-shirt from the bounce place and I'm going to ask the kids to decorate it with sharpie markers for Monster (then he can wear it to school, or use it for show-tell).

I was also going to use the time to see if parents want to exchange contact info with each other ( a sign-up type of sheet that I would pass to the other parents with the thank you cards). I've been toying with the idea of a yahoo group, but think that may be too much.

Well, if you made it this far, you get a cookie-a gluten/casein/dye/nut-free cookie!

And, yes, I do realize I'm worrying way too much. It's genetic.

Our First Parent-Teacher Conference

I have videos that I'll upload later, showing Monster reading and cutting and the like, but I wanted to put down an account of Mr. and I's first parent teacher conference while it is still relatively fresh in my memory.

Our previous school was somewhat special, it only included (for the most part) children with special needs. Thus, we didn't really have things like open house and parent teacher conferences. Then, we would consider our annual IEP as the parent-teacher conference with multiple off-the-cuff meetings whenever parents and service providers/teachers managed to find time.

So today was a new experience for us, and with all of our new experiences, it was both wonderful and emotional. Of course, I had a difficult time not crying (and in fact did shed some tears but Mr. says it wasn't noticeable). I found out something I never knew about Monster, and given the degree to which Mr and I know him (which is quite extensive as we have had to infer emotions/moods likes/dislikes given his previously limited verbal skills), it was a unique and blessed surprise to find out that he likes to write. Not just copy letter or words (which he really doesn't seem to enjoy, or rather rushes through most of the time we work with him) but to put down thoughts and feelings.

When we first found out he was keeping a journal at school, as a class assignment, I naturally assumed he was just copying something that someone else wrote or told him to write (To the wonderful women of his school, my deepest apologies for such an ignorant assumption). Not so. Not so at all. He writes (in his very poor handwriting, rushing too much, I'm sure) about what he sees in pictures, what he draws (he does quite a wonderful self portrait ;)), what he likes. His teacher told us that he will often keep writing beyond the simple statements they expect and they are even incorporating his writing down of requests. It may seem odd to the parent of a typical child to find out that their kid likes chocolate chip cookies-their kids have probably told them many times, both directly and indirectly, of their affection for them. I knew that Monster was partial to cookies since he will ask for them, but for the first time I saw, in his own hand, that he likes chocolate chip cookies (even the gluten/casein free ones we give him). He, apparently, also enjoys playing heads up, seven up, which was a personal favorite of mine growing up, and has raised his hand in class.

And we all marveld at how wonderful Monster's aide is and it just reinforces what we've known all along, Monster can do this if he has the right support.

And he's smart. I'm sure the teachers had no idea how much it meant to Mr and I to hear an educational professional say he was smart. Once upon a time in an alternate universe, Monster's IQ was measured at 58. There was no discussion about the relevance or how kids with autism had issues with IQ tests, yet it was implied that he had cognitive delays. It really wouldn't have mattered to us if he did have cognitive delays, but given the inaccuracies of the testing, we had no idea if he did indeed have more challenges to face. It may not be a wise or good thing to do, but I do have expectations about Monster's future and the not-knowing was worrisome, at least to me (I think Mr. has always had faith). Being told he was smart, along with his enjoyment of wanting to be around other kids does a lot to put my mind at ease.

All-in-all, a very wonderful (if also emotional) experience and one I would gladly repeat!

Today's videos include Monster reading with his dad-it is a PEC book where he matches the icon (an illustrated word to finish a sentence-a cool way to learn vocabulary, especially for a visual learner like Monster).One is him cutting out a shape (actually I decided to go with him doing math) and one is him at horseback riding. I'll post them in a bit.

Halloween

Finally, I get around to blogging about Monster’s Halloween. Better late than never, right?

We had bought him a Pirate costume, since he had taken to saying “Ahoy Matey” and playing on boats (around these parts, boats play a big part in play structures). We tried to get him to wear it to the birthday party he attended a while back (with no success) and we again had no success on Halloween. I got him into the pants (over his sweats) and they lasted just under 2 minutes (which is about a minute longer than the first time he put them on). So we went with our backup plan-Spiderman PJ’s with Monster being Spiderman.

In the past, Monster would last about 2 houses around Grandmas’ neighborhood, so we didn’t really expect to go trick or treating. Our town, however, had a great even planned at the firehouse. They built this big “foam pit” filled with white soap-like foam. This thing was huge! At the deepest parts, it would have been about 3-4 feet deep. I half expected kids to get lost in the stuff.



At first, Monster was very tentative about going in the stuff. He has always been sensory defensive to tactile sensations such as foam and shaving cream. He dislikes having his hair wet and rarely wears hats (except when it's raining, I guess a hat is preferable to wet hair).



He was so cute. The first thing he did after getting really into the stuff was to take off his socks and shoes (thank Mother it was a warm night). He then would hold up his pants legs (like picking up a skirt). At one point he had the pants up high enough to look like he was wearing underwear briefs! Eventually, Mr was able to convince him to drop the pants. And man, once he took the plunge, did he ever take the plunge. Mr had told him it was the last time and then we were leaving (We had been there about an hour). Up until now, he would go in, hang out a bit, come out of the foam, run around, then back into the foam. He knew that when he left the foam this time, we were going to go home.



All in all, it was a great Halloween. We got to see some classmates and one of his teachers there. It is very nice living in a small community.

Answering Questions

"did you go to school today?"

"no"

"did you go to the doctor today?"

"yes"

"Are you happy or sad?"

"Happy"

"Where do you go with Mommy?"

"The zoo and playground"

Not quite spontaneous, but, Ladies and Gentlemen, that's a conversation.

:)

Monster's first big boy b-day party

Monster has been to a few birthday parties in the past. Some of them at typical birthday party places, or at people's houses. This time, however, the party was more like the parties I remember as a child-games, prizes, etc; and Monster didn't ask to leave early.

A co-worker's son turned 5 and he kindly asked if Monster would like to come. We agreed. It's always nice to get out and find new places, meet other parents. The party was at one of these playhouse-type place. It had a Pirate ship slide area, a huge (open) inflatable jump houses (in the picture to the right), toys, etc. Previously, these places were "play in structure 45 minutes, move out for the next party". This place, was different. The party was a mixture of open play, organized games, eating, etc. We first got there and it was open play. Monster did laps in the jumpy place, ran to the slides (though he wouldn't actually slide for the first hour or so), climbed up and down. It was pretty much chaos, with about 10 5-7 year olds running around. Then they called to all the kids to sit down, for the first activity. I sat with Monster, giving him some hand squeezes, some body hugs (pulling his knees up to his chest), pushing down on his head, other sensory mamas understand what I mean.

The first activity was to go on a treasure hunt-not a follow the clues type of thing, but a literal treasure hunt. Plastic gold coins were strewn throughout the play areas-in the jump place, on the slides (I think), the floor, etc. After the wonderful young woman (she was awesome with the kids), finished explaining the game, the kids took off. Monster went back to the jump house for more laps, while the other kids were scrambling for the coins. After they left, taking the coins they could see with them, Monster started poking around the seams, finding 2 coins. I don't know if he chose to look for the coins, or if he was looking for pressure on his hands, and found something that felt weird. Regardless, he brought them to me and walked with me to the pot, like we were suppose to. He put the coins in and went back to jumping in the house. The two women leading the game, kept dumping out the coins in the bucket, so the kids would continually be looking for more coins, very ingenious! After all the coins were finally picked up, we sat together (like circle time) and counted them. Monster didn't really count with the group, but he and I counted up to 20 while we waiting. After the counting, each kid got 1 piece of candy (Monster declined his piece, which is good since he's not allowed to eat most candy due to artificial dyes).

This activity was followed by pizza-the jump place was closed for 5 minutes, guaranteeing the kids will have to sit down and eat something. We put 5 minutes on my visual timer (it's an iPhone app, it costs $0.99 and it works just like a Time Timer with the added benefit of having the colors pulse, an alarm, etc.) and tried to get Monster to eat something (or drink some water). When that was done he got to go back to the jumpy-thing. Then it was time to play musical chairs (or rather, musical foam puzzle pieces). We again gathered in the same place (those play mats that are cushioned) and I again had Monster on my lap, providing deep pressure in his joints. He said he wanted to play the game, I led him around in the circle, actually, it was more like him leading me. He stopped and found a foam when the music stopped, and made it through 3 or 4 rounds before he decided he was done and I pulled him off. After he was done with the game, he went back to the jumpy-thing and watched the other kids finish. This time, he said he wanted the candy, so we got in line and he chose a piece when it was his turn. I promptly traded him 2 pieces of his favorite gum for his Swedish fish.

For the remainder of the day, he would follow the other kids jumping/sliding for a while, then take himself somewhere quiet-one or the other of the slides, at the top, or lying (or is that laying?) down in the jump house. The kids would swarm from one to the other, so he couldn't really be alone for very long. When he was at the top of this one slide, where it was dark and a bit quieter, Mr sat with him and talked with the other kids. Monster really enjoyed watching the kids and almost came down the slide (an enclosed twisty one, and he never goes down things where he can't see the end alone) a few times.



Then it was time when they party folks brought in balloon swords. Monster said he wanted one (he's gotten them before), so I got one for him (a little girl came and either returned it to me at one point, or gave me another one-saying it was for Zach, I can't remember which, but it made me think "Why does he always end up with a girl taking care of him?" since Monster has always found some female peer (or older, but still a child) that adores and dotes on him-since his first day of daycare where the older girls would treat him like a living doll. I played swords with some of the kids, Monster and I played swords, it was a blast to be had by all! He eventually even slid down the slide by himself (without dad pushing and mom pulling).

All of the kids were great. They weren't too pushy when waiting and there didn't seem to be a single fight between anyone-they were all sharing and taking turns but in a very high energy, chaotic way! The parents were nice. Mr and I both got a chance to chat with people. Mr told me that one of the parents said he just thought Monster was shy (and we were a bit overprotective-j/k). Honestly, looking back, there was very little outward difference between Monster and the other kids. Sure, *I* knew he wasn't really chasing the other kids (and often would leave after a few minutes) and I had to hold his hand during musical puzzle pieces. But, in his own way, he was choosing to interact in socially appropriate ways (aka playing). We even made it through the entire party; by the time he said "all done, go home", other kids were getting ready to leave.

Not only was the party a great part of the day, the day actually started out really cool with Mr. doing homework with Monster. Mr would put a time on the visual timer for when Monster would start his school work, he would only have to work for a pre-set time limit (5 minutes), after which he was allowed to play (computer/DVD player). Repeat for (1)math, (2) writing/cutting, (3) sight word matching. He didn't give us any grief or tantrums before doing them (which can happen during the week). After the party, and then dinner, he played in the tub a long time, reading to me, and didn't give Mr. a hard time before falling asleep (Mr. kindly/demonically relieved me of my nighttime duties so I could endure the Bears game). All-in-all a magical fall day (despite the frigid temperatures and pouring rain).






Here is Monster working his way to actually sliding down the slide. This sucker was fairly steep and slick. Kids were flying down it before crashing into a cushioned mat.

So that's what an IEP is suppose to be

We had our first IEP at the new school this morning.

It was as different from what we were use to as can be, except for one thing-we still didn't get any information before hand (this is universal, isn't it?). The meeting was only about an hour long, they had another IEP scheduled, however it was a very productive hour.

The teachers spoke about where Monster was, how he was doing. They did say that, for the most part, the goals the old school wrote were pretty on target for him, but that he blew threw them. They really hadn't written any goals yet, but we did go through what they thought he should be working on and we agreed to those in principle, now they will write the goals for us to review before agreeing. We spoke about generalizing everything to the home so we are all on the same page. The social stories, the picture strips, how they handle things. I'm continually blown away by the resources they have and the way they use them to integrate Monster into the school. For example, his special ed teacher is making a story board for PE so he can follow the games with this peers. His aide works with him to walk up and down stairs so he doesn't fling himself down them (they go through his social story, practice, prompt, etc). All the teachers have PECs attached to their belts so they can use them when needed. All the doors for activities have PECS on the outside.

But the single, most important (to me) tool, is his aide. She is an angel. We got word today that she is no longer temporary but will be hired as his aide. She can read him and help prevent problems before they happen because she is with him all the time. He is able to go to Music, art, PE and recess with his typical peers because he has someone who can help remind him how to act, read his moods and get him to where he needs to be. If ever I had a doubt (and, honestly, I never did) of what a properly trained paraprofessional can do, seeing what Ms. V can do for Monster has erased it.

Some people say that having an aide is restricting to a student, and I agree with that if the aide is not trained properly, or if the student does not trust them. But having an aide has opened so many doors for Monster. She is going to help him line up and walk in with his peers, she is going to help him eat lunch in the cafeteria with the other kids, she helps him play with other kids on the playground. How can this be more restrictive? She doesn't do things for him; she doesn't teach him directly, or act for him with other people. She is a talented, beautiful tool who helps Monster learn how he is suppose to act and gives him the confidence to try.

The ultimate goal is for Monster to NOT need her forever. To provide him with the tools and confidence to do things for himself. But sometimes, having training wheels really can help someone learn to ride a bike. Eventually, those training wheels come off.

I love my new school. But I absolutely must send out a great big internet kudos to those at my old school. Monster wouldn't be doing so well now if he hadn't had the foundation laid then/there. They may not know how to take the next step to embracing inclusion (and with the way schools are treated in CA, financially speaking, I'm sure it is a tough step), but they have talented staff who can do a lot with the little they are given (resource wise). For Monster, they wrote some good goals!

Monster is still autistic. He still has challenges, but he has a great group of people at school who are going to help us help him be the most he can be.

Now on to a few notables (both bad and good).

Good: Monster is learning to swing himself (pump his legs/arms). He is so cute pushing off of the ground, swinging his legs and then, his newest trick (learned, I'm sure at school watching other kids) jumping off the swing.

Good: Monster is reading more at home. He uses his finger and reads the books teacher sends home. I'll try and grab some video (which may be a bit wonky, since he reads during bath time :p) of him. He is cute (needs work with his articulation).

Good: He was playing outside by himself earlier. Mr. was cooking and keeping an eye on him, but he was playing on his swing, etc. So very reminiscent of what a typical child would do. It's the little things, isn't it, that are so special.

Good: He will use up/down, left/right to show us which video he wants from his collection.

Bad: He has bitten two kids at school-both on days that rained. The school has been very good about responding to both incidents. Apparently, there was some frustration with the rain preventing him from doing what he would normally do. The school is working on social stories to help him understand what will happen when it rains (indoor play days). On a positive note, it seems like the little girl he bit the first time came up and hugged him, so no hard feelings.

Bad: his fingers are extremely red and swollen. he has been biting them often. This wasn't unexpected, given the amount of work he has to do all the time now. Poor kids rarely ever gets a break. He has to work at everything (meaning, speak, follow rules, etc) and I bet it's exhausting to keep in control of himself all the time.

Good: his eye contact is amazing. All of his teachers/therapists commented on how he looks you in the eye. He is on the verge of something, I can feel it.

Good: Mr. is having him do chores (ok, this may be bad for him :)). He helps put clothes into the dryer, rakes leaves, feeds the dog, helps put away things.

Good: He is getting so much better at brushing his own teeth. he actually can do the front surface of his front teeth, and will hold his mouth open (with a gazillion prompts) so we can get the back ones done.

Well, this is getting long winded, as usual, but I hadn't blogged in a while and wanted to get some of this down so I don't forget the good stuff next time I want to pull out my own hair.

It's not related, but I'll end with a picture of autumn, the most beautiful time of year in New England.

Open House

So tonight was open house at Monster's new school. We had never had one before. His last school never did anything like that.

We didn't have any child care, so Monster went with us (School said they preferred the kids stay home, but they preferred we were there with him than not there). he had a very busy afternoon: first trip to a new pediatrician, horseback riding and only about 10 minutes downtime before open house.

In preparation for open house, we put together a poster about Monster-pictures of the family, what he liked eating, favorite color, etc. He did about 50% of it himself, which was pretty good for him. I was concerned it would be too plain compared to the other kids, but when we saw them all together, it worked well; it fit right in with the others (one wouldn't be able to tell it was from a disabled kid--I should take a picture of it when we get it back).

Monster didn't last more than 2 minutes at the begininng of the open house, when everyone was in the gym. It was fairly loud, and hot, so I don't blame him for wanting to leave. Actually, he did really great all around, even though he didn't even want to be there. I think he was worried he would be asked to work ;)

After the initial talk, we all broke out to go to our kids' class. I found Mr and Monster and we decided to start in the library. Mr hadn't met the librarian (who happens to be my boss's wife) yet. After that, we went looking for Monster's class and stopped by his speech therapists (to ask for directions ;)). she is a wonderful lady, who is also new to the school. We chatted for a few minutes. She told us that Monster had really moved beyond PECS (picture exchange communication systems). I still remember at the beginning of this journey, the pitying look on the speech therapists face as she explained that PECS may be the only way Monster would be able to communicate with people. Don't get me wrong, PECS is an amazing and awesome way for non-verbal people to communicate with the world. I'm just amazed that someone would nearly "condemn" a child of 3 to a lifetime of using it without even trying to help him find his own voice. I doubt Monster will ever be a chatty kid, or adult, but he can speak if he needs to. It's so very sad that some people give up on these kids. I think it is a combination of low expectations (maybe they saw Rainman too many times) or just being overwhelmed. These kids aren't easy.

Back to Open House...

Monster's new SLP is awesome and seems willing to work with us to find ways to get Monster to work for her. She has a very good approach and is keen to read his cues and keep things fun enough that he'll keep working. Which is the key to working with our kids. I don't have experience with typical kids, so this may seem quite obvious to any parent. Kids on the spectrum can escape into their own heads. In fact, I would say they often prefer their own heads to our world since it is under their control and not overwhelming to them, that's why so many of us wonder if our kids have hearing problems at first. With Monster, especially when he was younger, once he "checked out", that was it--he was gone. He knew we were there, that the world was around him, but he didn't want anything to do with us. Over the last few years, he has being in this world with us, but he will still check out if he's too anything (too overwhelmed, too tired, too pissed off, too much food he shouldn't have). If you want him to work, it is a delicate balancing act of keeping him engaged and pushing him to do more. She seems to really get that.

Heck, the whole school seems to really get that.

After the Speech therapist, we went down to one of his two classrooms. Monster splits his day between 1:1 teacher time (in a "quiet" room, where he does his academics) and his homeroom class room, where he does group activities (calender time, PE, art, music). First we stopped off in his quiet room. Oh my! I saw his schedule and there must be something like 20 icons on there (Monster has what is known as a visual schedule, where his day is laid out in a series of pictures that he can pull off when he has completed his task. it tells him what is coming up and what he needs to do). He is kept moving all day, not a lot of times where he has "free play" or "free time" which is good since that's when he generally gets into trouble (bored, fixates on things). Now I know why he is so tired at the end of the day!

His special ed teacher has a lot of fantastic ideas. She seems to understand him fairly well-that he learns better when he can keep moving, she uses white boards a lot with him, doesn't make him sit down too much. She told us today that they are going to start increasing his time in the homeroom class starting Monday-they think he can start doing some of his table work in the class room with his peers. In her classroom, they have a trampoline, basketball hoop, a pit for jumping/crashing. It's really good for him.

Finally, we made it to his classroom. Unfortunately, Monster was beyond at the end of his rope. He had started asking to go home when we got to the library! We did get to chat with his teachers a little bit. During calender time, the teachers will try to ask him questions directly, and he will generally answer them correctly. According to one of his teachers, the other kids are actually amazed at how smart he is. I got the impression, they (the other kids in his class) thought he was one of the smartest in the class. We did meet a parent of one of the kids in his class. When she found out he was the Zachery, she told us that her son talks about him a lot. Apparently, her son likes to "talk with Zach". WOW.

As keeps happening to Mr and I, we spent most of the night fighting back tears (happy ones) as we spoke to everyone.

Losing my job wasn't fun, but this place is good for us.

Two steps forward, one step back (the redux)

It always happens, doesn't it? We leap forward a few steps then slide back down a bit.

Monster is still doing ok, but he's finally realized that school is WORK. Last week, he asked to stay home, and as always, we let him. I was fighting a bad cold, so Mr thought Monster wasn't feeling well. Mr asked Monster "are you ok?" he replied "Zach not ok", which Mr took to mean he wasn't feeling well. Of course, then Monster spent the rest of the day having fun, with no evidence of feeling poorly at all.

Both Thursday and Friday, Monster put up a fuss about getting out of the car and going to school. Today, he also put up a bit of a fuss. All three days, though, the fuss was getting less and he did go to school. After speaking to the principal, it sounds like they are really pushing him to spend more and more time in the classroom and less time either at sensory breaks or in private teacher time. This is tough work for him, I know that and finally he knows that. I finally get a taste of what moms of typical kids have to deal with ;)

Since I like to over analyze and think things to death, this challenge makes me look back on our journey with a wry smile. Mr and I get so hyper-focused on one thing, we seem to forget that that one thing isn't going to fix all the problems. Call it our own version of denial. For the longest time, it was getting Monster to interact with us. Then it was getting him to speak. Then it was getting him into an integrated program.

We've come a long way, but we still have such a long way to go. It sounds like I'm being pessimistic, but I'm not. I'm just so goal oriented, I often forget that reaching the goal is the beginning, not the end.

Teacher's Note

Since I wasn't there, and I didn't actually see or hear anything, I just thought I would just copy what was written in Monster's communication book from today at school:

Watched PE in gym-said "soccer" and wanted to play! Z had a great teacher time. He attended calender in class, for a full 15 minutes. The teacher asked him to complete the pattern and he told her and the class the answer...Z sat at his desk and wrote his name (hand over hand) and drew a triangle and a circle. At recess, Z's friend, K, asked him to play. [and according to his aide, he did go and play with her].

:D

He seems to like school so far.

School-Week 2

No pictures, sorry!

Day 2 (and beyond) was actually better than day 1, though it had a rocky start. We did find out that he spent a lot of Day 1 on teacher's (sped teacher in his classroom) lap, bestowing upon her many hugs and kisses. Before you say "ahhh....", know he fully realizes how cute he is and does this to get his way. We generally warn his teachers about it. Not at all an emotionless robot!

We got to school and took Monster down to his class. However, he really wanted to play on the playground. Parents were no longer allowed on the playground (that was just the first day) and anyway, the whistle blew and it was time for class. He was really working himself into a nice tantrum, when we got to the classroom. Standing outside was the principal, et. al., and she suggested we have our meeting outside so Monster could play while we spoke.

At our IEPs back in Fog City, it was very difficult to find a date/time that would allow everyone to attend. Budget cuts increased work loads and the number of meetings required for each professional. So color me surprised when our little informal meeting was attended by Monster's sped teacher, the sped teacher for second grade, the OT, the SLP, the principal, the Sped director, the social worker and a, drumroll please, a 1:1 aide that the principal called that morning for Monster. All arranged in less than 24 hrs.

The Sped director was very sweet, asking if we minded if Zach had a personal aide (without a lawsuit, even). They hadn't put together a system for him, but we went through what we thought would work, such as allowing him to go to a quiet room for individualized instruction, including him in group activities and more structured times, OT interventions, how he does things, setting up a PECS system and the like.

He made it through the entire day that second day, as well as all the days since. They put together a nice little schedule for him, including sensory breaks (did I mention they have a squeeze machine? basically rollers that provide deep input while he crawls through it), 1:1 time with the sped teacher, etc. They are still figuring out what he can do, and I think they aren't setting the bar too high right now, that will come, I'm sure. He does spend a majority of his day in individual instruction, but it's early yet; I would imagine it will take a while for him to get comfortable.

However, by all of our key parameters, he loves being in school. He has always enjoyed school, and now is no different. His sleep is ok; he has a difficulty winding down sometimes (Epsom salts are really helping, nights he doesn't have them in his bath-because we ran out and there aren't any nearby stores-he's more wired), but he is being chatty (mostly) during those times. We don't understand him, but a lot of the time, there are words. Mr. thinks Monster is going over things he saw and is processing things, and he's likely right. He willingly gets ready for school, and easily goes out to the car for class. He will say he's happy (when asked if he is happy or sad). The only downside so far, is increased hand biting.

Monster's language is doing great. He continues to be fairly adamant in trying to control all of us, but I don't mind too much. His latest is saying "I love you" when he wants to play on the computer and I want him to answer questions. OK, it sounds like "I yuy oo", but I know what he means-"I'm cute, so let me have my way".

I know we have a lot of work ahead of us. As we challenge him, things will get rockier. But for the first time since we started down this road, I finally feel like he has a chance to really reach however high he will. In some ways, it's scary. It's time to walk the walk that my mouth has been talking over the last few years.

Time to see if I was right.

First Day of School

Boy, am I glad the first day is over. I can finally stop obsessing about it.

Today was Monster's first day of first grade. It was also his first day at his new school, his first full day of school, his first day in a mainstream classroom and his first day having to eat lunch in a cafeteria (well, sort of).

Overall, I give the experience two thumbs up. I'm fairly exhausted (I didn't sleep much last night) so I may not make a lot of sense and ramble ;)

Before today, Mr had been taking Monster to the school in the morning and walking him down to his classroom. They hit the jackpot yesterday and managed to hook up with Monster's teachers. Mr and the teachers got to chat for a bit in Monster's new classroom while Monster got to chill out playing on his iPod (Note: if you have a child with autism, I highly urge you to get an iPod touch or iPhone for him/her, it is a very versatile, useful). Mr. said that Monster gave one of his teachers a hug before they left.

Mr and I got up at 6:00 to make sure we got everything ready. We didn't need to be at school until 8 and we were actually rushing a bit at the end. Don't ask me why, but we were so stressed and bit insane that we couldn't hit a grove. Monster woke up about 6:30 and started getting whiny because Sesame street wasn't on yet (Note to self, set up DVR for Sesame Street). He wanted to start on the DVDs, but we didn't want that since it makes it more difficult to get him out the door when he starts (he will focus and obsess with watching the transition to sneak peeks on his Disney DVDs, he doesn't actually watch the movies once he starts, he doesn't like to be told to stop and this can initiate a major meltdown, especially if he was tired). We managed to get all of his various meds (supplements, etc) down him along with some corn puffs (his breakfast) and apple juice. One or two minor whines, but all-in-all it went fairly well. When I had him put on his backpack and go out of the house, he did so with a giggle and a smile.




Even though we were rushing, we got to school fairly early so he could play in the play yard. The school folks told us that, in general, the kids play for a bit after the buses get there before they line up for class. He was excited about being there (he had played there several times already), but everything had a coating of dew on it (Monster hates wet clothes, shoes, etc) so he didn't get to swing or anything. He seemed to be having fun, though.



During this time, I was able to meet with Monster's teachers. For background, Monster's new school has a different approach to special ed. Instead of a special day class, they use a co-teaching model. The class has one general and one special education teacher along with at least one aide. The special needs child is in the general education environment and integrated into the class as much as appropriate. It exposes the neurotypical children to neurodiversity and it allows the special needs child to learn and practice social interactions. For Monster, this is ideal because he seems to crave other kids. He doesn't know how to interact with them which causes him anxiety. It takes him a while to try new things and he prefers to observe something for a long time before trying it. This situation should give him the opportunity to observe other kids and get comfortable enough to start to interact with them (that's the idea, anyway ;)).

Back to the first day...other kids starting showing up, and eventually the yard got extremely chaotic. Still, Monster stayed in the middle of it fairly well for a while. I was playing with some of the other kids, trying to show him kids are cool. Eventually, he walked off by himself to lay down on a bench in a quiet corner of the yard. I was pretty happy about that, it showed he knew he needed some down time and found it.



During the chaos, I learned that the procedure for school is the student put his/her backpack in the line that corresponded to his class. Monster's line was No. 13, which for us is a lucky number (long story for another blog) so we took that as a good omen. Once I learned this, we had Monster walk his backpack to his spot in line, drop his backpack and go back to playing.

We cuddled for a few minutes in the quiet place before the whistle blew and my nerves really ratcheted up. Mr and I each took a hand and we started walking to wait in line. Monster resisted a bit, saying playground, but I think he was just pushing boundaries-he didn't try to break away and we were able to direct him to the line fairly easily. He didn't do that well in the line, however. There were a lot of kids and parents (the kid in front of him was crying in his mom's arms, poor baby) with his stuff in the middle of it. It reminded me of a semi-controlled mosh pit. Monster was wide eyed and I could feel his anxiety start to climb (up until now, he was getting overstimulated, but he wasn't really anxious that I could tell). He was very good about telling us he wanted his backpack off. Very adamant! He did keep it on, though, so I think he was pushing his boundaries again. We chose to bring him to the back of the line, where it was less crowded and waited until it was time for him to go in. After a few minutes, teacher started to take his class in. The special ed teacher came up and took his hand to lead him in and, with a sad little look over his shoulder and a shouted "I love you, Baby" from mom, away he went.

Mr was given permission by the teacher to peek in the window, so he did and caught Monster chilling in the bean bag (Monster also caught Mr peeking). No screaming, no crying, no meltdown (not even me). Phase one was complete, separation was achieved with Mommy having a tougher time than Monster.

About 2 hours after school started, I got a call from the school nurse. Everything was fine, but Monster bit off an swallowed part of a toy. Fortunately, that was the worst of the day.

Before school started, we had set up a system with the school for Monster if he started having problems. He would be given the option of talking to mom or dad on the phone, and if he wanted to go home he could. At lunch time, 3 hrs after he was led away from us and 3 hours before school would be out, Mr got the call. It was lunch time and Monster was asking for Daddy. Because lunch was going to be in the cafeteria, which could be loud and crazy, it was decided that Mr would pick him up and the day would end there on a positive note.

While picking Monster up, Mr got to talk to the principal and teachers again. The plan for tomorrow is for Mr and I to walk Monster down to his classroom, rather than have him line up. Afterward, we are suppose to meet with the "team" (we think the SLP, OT, Sped teacher, etc) for a bit. Mr is going to eat lunch with Monster to help him get through that tough place. After lunch, Monster will have the choice to stay for the remainder of the day. I think he will likely stay if he can get through lunch.

I must say I'm completely impressed with the school and the staff and have high hopes for the upcoming school year.

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 ;))

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.

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!

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?

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.

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.

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!!!