MRI

Whew.

It was a very long day.

It started out with Z throwing up twice (we think it was his stratterra on an empty stomach). We got the hospital fine at the correct time and proceeded to sit and wait for almost 2 hours. I realize places like this have to be flexible, but man, it sucked. Eventually, I went up to the admitting person and asked how much longer because Z was getting antsy. I told her he was autistic and would be calmer if I could give him a time. That I knew they didn't know exactly, but even a worst case scenario would give me something to work with him on.

Those words were like magic. She got on the phone and a Child Life Specialist (someone who is there to help kids like Z) came out with some sensory stuff and a visual story about the MRI. They took us straight back and found us a room with a DVD player. She also went to find people to make sure things kept moving.

I wish I would have said something about his autism sooner! On the other hand, I'm always amazed that someone didn't flag his file somehow to let them know he had autism. I'm sure Mr mentioned it (though he may have assumed they already knew like I had). Apparently, Hasbro has programs and social stories and the like in place to bring the kids in before their test to help them prepare. I would have loved to have known that ahead of time!

Anyway, after another hour (it's now close to 1:00 pm, we got there at 10:00), and two more nurse conversations (one of which explained everything to us beautifully), they finally came in to give Z versed (up the nose, which he hated). Within 5 minutes, the kid was OUT. Not entirely asleep, I could see/feel he was aware of things but unable/unwilling to move or anything.

They came back to start his IV. And foolish woman that I am, I watched. I was holding his arm (he was aware enough to start jerking away from the IV placement-they did put the numbing cream on first) and watched them place the needle. Now, I have a needle thing (I think most do) and watching them move that needle around under his skin placing it about had me either puke or pass out. When they left, I started crying and Mr and to tell me to pull it together.

Mr had to carry Z to the MRI (Z was that out of it) and we had to stand and wait for the doctor to come in. Mr got a real workout! 66 lbs of dead weight. Z was semi-awake, groggy and out of it but with it enough to try and peel away the stuff holding his IV and trying to take off his ID bracelet. I was trying to keep his hands still and not jostle him too much lest Mr lose his grip.

Doctor shows up, we put him on the table and they start to give him the iv drugs. First one was lidocaine to numb the veins. Z did ok with that. Then the sedative (which I guess burns going in) and Z started fighting us. The 2 techs and I had to hold him down and keep him from ripping out the iv. it was kind of funny to watch, one minute he was fighting like we were trying to skin him alive and a second later he was out for the count.

The MRI took about an hour. Mr and I got to stay in the room with him the whole time, not that he woke up or anything (damn but it's loud in there). The Tech initially asked if we wanted to try for him to stay away (but maybe on versed) but we looked at her as if she were insane. We definitely made the right choice, no way would Z have made it through the noise and stayed still.

Afterward, he slept for about an hour or so. He would wake up, then doze off again. Mr said the first words out of Z's mouth would be "mommy". I said it would be "library". I won

Z was groggy and a bit of a drunkard for another 1/2 hour or so. We left about 4:00 (we had been there since 10:00) and he still hadn't eaten much. By the time we got to the first library, he was pretty alert. By the second library, he was wide awake and active and by the time we got home (about 6:30) he was back to himself, though a bit on the hyper side (we suspect he didn't get a full dose of his stratterra that morning).

He eventually fell asleep around 11:00 that night and slept until almost 7:00 this morning (his normal time). He was hungry, awake, playing and ready to go back to camp.

Tonight, Mr and I are going to see harry potter as a treat to us (and to Z, since his aide is going to sit with him and he adores her).

We get the results on Monday. I'm glad it's over and don't want to do it again if I can help it!

What's going on with us....

I've been horrible about keeping things up here. I would like to blame my being busy (and I am), but I think it's more laziness than anything.

A lot's been happening in the past few months. Back in January/February, Monster's teacher and aide noticed some troubling behavior. It seemed that he was spacing out (for want of a better word) and they couldn't regain his attention as usual. Once or twice, the aide was very concerned since after Monster "woke up" he seemed disoriented and tired. They did some googling, and seemed to think these episodes were like absence seizures. So they talked to us, we talked to his pediatrician (and some folks around here) and eventually found a pediatric neurologist in Massachusetts. We went in April for a visit and exam (Monster did great)and scheduled an EEG.

The EEG was a bit of a challenge for all of us. First off, Monster doesn't like things on his head. He's gotten a lot better and will wear hats occasionally and knows he must wear his helmet to ride a horse or his bicycle. But he hates having his hair washed or any goop in hair. Getting all of the wires hooked up was anything but fun. Mr and I had to hold his hands, his legs and hold him down (with the aid of a technician or nurse). I must say, however, the lady that wired him up was FAST!



The EEG took about 20 or so minutes. Since Monster wanted to immediately rip his wires off (they were stuck on with a glue-like gummy substance), we had to hold his hands, or at least keep them from being able to reach his head. One thing that really helped was having a timer on so he knew exactly how long he had to keep the wires glued to his noggin. I warned the tech that he wouldn't tolerate the wires 1 second beyond the timer, so we settled upon 30 minutes on the timer to give her plenty of time.

Monster got to play with Mr's phone, while I got to hold the timer. Monster checked that timer about every second or so, but it kept him mostly calm.



The EEG itself was interesting. He just sat there and played for a while (most of the time actually). But they also tried to induce whatever by having him blow a pinwheel. He got tired of that pretty fast, but hung in there and did what he needed. Then they flashed strobe lights around him. He really seemed to enjoy looking at the strobe lights a lot. And, voila, it was over and he got to rip off the wires. His hair looked pretty wacky afterwards, though ;) (and you can tell how thrilled he was).





About two or three weeks later, we got the results back. It seems as though Monster has increased electrical activity in the back, right part of his brain. According to his neurologist, this is the part that deals with his cognitive function and attention/focus. The Doc said that they use to not treat for this, but with the possible regression noted by Monster's teachers, he recommended that we start Z on anti-convulsants. Scary for the parents, but it is what it is, right? Right? The medication is Lamictal (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000957/). We won't be at full dosage for a while and we likely won't be able to determine if it has any impact until the fall.

In addition, the Doc wants to do an MRI to check for any structural abnormalities. Ok, another test, we can do this. However, we need to pull Monster's spacers out. Spacers that need to be there to prevent his needing braces when he gets older because of the teeth we had to pull (why do I feel like we are being punished for not getting him to the dentist sooner?). So we had the spacers yanked (actually, Z had removed 2 of them on his own, so they only had to remove 2 of them), which was also tough on Z since he had a spacer thingie used to keep his mouth open. He was a bit freaked out by the whole thing. His dentist wants to try and put them back in next fall (without the surgery part this time). YIKES!

Well, that's it for the amazingly electrical brain of the Monster. Next up, his latest IEP meeting (next post).

Autism Unit at School

I should have written this blog immediately after we got home last week, but I think I've been processing it. Now, I've forgotten half of what happened!

Last week, Z's teacher arranged to have us and one other mother (whose son also has autism and is in Z's class) to come speak to the class. They put together a whole unit on autism.

First, Z's special ed teacher read a book on autism (can't recall which one, now, but I liked it). Then we (the parents, Mr, I and the other mom) sat down and just answered questions. The questions I remember are:

Why does Z cry in school? This was news to me and I need to ask teacher about it.

How do they communicate?

What does he do on the computer?

How does he go to bed? I thought this was a funny question.

Besides the computer, what does Z really love?

How does he play?

What does he do when he gets angry?

The other mom also did an exercise with the kids that was really cool. She wrote up a bunch of random things and told the kids to play the game-with no further instructions. It was to demonstrate how difficult it was for kids with autism who don't understand the "rules" or understand what is expected of them. To show the kids how frustrating it could be.

A kid also said something I really love, that kids like Z can't speak because they can't find their words in their mouths.

After the question and answer period, there were 4 activities.

(1) listen to instructions to do something while also listening to a story. I really liked this one because it shows how difficult it could be for our kids to focus or filter out background noise.

(2) stringing beads while wearing gloves. Another good one to show the difficulty of fine motor skills.

(3) Writing sentence while wearing goggles smeared with vaseline. While not directly applicable to autism, per se, it did demonstrate how difficult it was to write when you couldn't focus on the lines to guide you.

(4) walking forward and backwards on a tape line while looking through the wrong end of binoculars. While not obviously or directly related to autism, per se, it does demonstrate the difficult for anyone who can have difficulty with depth perception or spatial problems.

It was wrapped up with a few more questions and then the school day ended.

All-in-all, it was pretty cool and I was very appreciative of the school making an effort to help the kids get a better understanding of what autism is and the challenges our kids face. Of course, this meant I had to agree with the school revealing Z's diagnosis. I understand that can be a very difficult step for some parents, especially those parents of children who aren't overtly autistic. However, since Z already has an aide, it is pretty obvious that something is different with him, so it was an easy decision for us to give them a name and context for what that is.

I love my school. They aren't perfect, but they do try hard.

Our first day of school Odyssey

Well, we managed to miss the bus this morning-not an easy thing to do when they are picking up your child AT YOUR HOUSE (and no, I don't mean a bus stop that happens to be at our house, they actually came to our house to pick him up).

The school secretary told me 8:00, same bus driver, aide on board. The bus showed up at 7:45, new driver/monitor and no aide. We aren't the type of folks to be ready early, so after oversleeping this morning (and having only been awake for 15 minutes), we hit the high gear and I tried to set a speed record for Z to be dressed. Mr just went and told the bus driver, sorry we thought it was 8:00, we'll drive him.

Anyway, Monster fell asleep without a problem last night (I was expecting a full out war) and seemed happy this morning. When I was getting him dressed because "the bus is here", he said "Camp", and when I said no camp, school, I got the customary "No school", but his heart wasn't in it. He was just testing boundaries. We got him medicated, washed, brushed and dressed (sorry, no pictures). When it was time to go outside, he didn't even detour to the swing or bubbles, just straight to the car and got in h is seat.

On the way to school, we asked him what he says when he gets to school and he responded "Good Morning, Miss V"-and we hadn't prompted him before this, he just remembered from last year! When we got there, his aide had us pull around the way the bus would (to get him into his routine somewhat, we had texted her about the bus kerfuffle) and let him out at the bus stop. He got right out (after putting his shoes back on), grabbed hold of V's arm and started rubbing his forehead on her arm-kind of like putting his scent on her Wink.

He seemed eager for his overly emotional, hovering mom to leave, so Mr and I said good bye and headed back home.

I told Mr I didn't think Monster would last past lunch; Mr thinks V can coax him to stay until the end of the day. I suspect Mr is right.

Not a bad beginning.

Bedtime Battles

Bedtime continues to be a major struggle.

The weighted blanket was a fail. If I put it down by his feet, it seems to help during sleep, something to press against, but he doesn't even want it on his bed.

On Monday, Memorial Day, Monster went to bed by himself and fell asleep by himself. Yea! But, alas, it was a fluke and has yet to be repeated. The best we can figure out, he doesn't want to go to school. He is very much done! (Not that I blame the little guy, it's been a long, tough year) So, in his mind, it seems like if he doesn't go to sleep, school won't ever happen. Being the mean and cruel parents we are, Mr and I always make him go to school the next day.

We changed up his bedtime, again, a few weeks ago. Instead of a movie at bedtime (after the 666th viewing of Escape to Witch Mountain), he gets to play with an iPhone/iPod Touch for 5-10 minutes in his bed (by himself). Afterwards, we say goodnight, turn out the light and let him try and go to sleep by himself. 3 weeks of no luck-we eventually have to go in and lay with him-we had a success on Memorial Day. I think it took him about 20 minutes or so, but Mr. had the resolve to let Monster work through things on his own. Every night since, Monster gets up and either starts jumping on the beds, sings, or just comes out looking for us. We end up in the room with him, again, and he proceeds to try everything he can think of to stay awake, including trying to provoke us to the point of yelling (something, I, unfortunately, with an embarrassing frequency).

He shouldn't have been able to fall asleep on Monday. We went to 6 Flags, got home late and he was amped and over-tired. Usually a recipe for a long night for Mr and I. So what was different? The only things I can think of are he got to spend a lot of time with me and Mr (all day at 6 flags) and he may have thought he was done with school (since it was Monday and he didn't go to school).

We have three more weeks of school, but we are going to try an experiment tonight by letting him know, emphatically, that tomorrow is a "home day" and there would be no school. Maybe that will be what it takes, or maybe not. Another thing that concerns me is that we praised him for being "a big boy". I think he doesn't want to be a big boy. He often tells me he is a baby. Can't blame him for that, growing up can be a big pain, especially if it means he has to be more in control with more responsibilities.

We aren't giving up, though. We will keep trying different things. Keep trying to let him work things out on his own and keep crossing our fingers.

The $15, no-sew weighted lap blanket

Monster uses a weighted blanket at school. I've been toying with the idea of using one at home as well. The biggest stumbling block was the cost vs. his potential use. I don't mind spending what I have to get something that will help Monster and he'll use. We dropped a huge chunk of change on a loft bed with a slide that he loved to play on (even if he didn't actually sleep in it). The slide is now outside on his swing set and he is actually sleeping in the bed (part time anyway).

I looked up how to make one, and didn't see anything that I could do without sewing. I don't have a sewing machine and have only the most rudimentary sewing skills anyway (I can hem up something or patch a seam, but I'm not a seamstress). After a few stops and starts and alterations, I was able to make a 6lb lap blanket yesterday and Monster crawled under it during bedtime. I have no idea if it was the blanket or the super long bath, but he fell asleep quite nicely (for a change).

From my reading, the weight should be about 10% plus 1 pound. Monster is just under 60 lbs (he lost a smidge of weight), so I went with a 6 lb blanket.

I found all of the components at Ocean State Job Lot (similar to Big Lots) for just under $15.00. Most people suggest that you fill weighted blankets with poly pellets because they are washable. I chose to make the weighted inserts removable so the cover can be washed without the weight in them. If you substitute Poly Pellets, the cost will double or triple. You can also substitute aquarium rocks-which should be machine washable.

What you need:

Queen sized pillow covers (the kind with the zipper)
3 pairs of socks
6lbs of rice
stitch witch (a no-sew bonding material, you can find it at Walmart or any fabric store)
An iron
damp cloth (for the stitch witch)
smooth surface like an ironing board
some sort of scale (although 1 lb of rice is just over 2 cups)
Tape measure
pins

Fill each sock with 1 lb of rice. Each sock was sealed with stitch witch. Cut the stitch witch to fit the opening of the sock and follow the directions on its packaging.

Using the queen sized pillow, I found that placing the stitch witch at about 4 3/4" intervals evenly distributed the socks along the length of the pillow. You can place the socks in the pillow case first-they should lay (or is it lie?) across the width of the pillow-to find what you think is the best placement. Basically, we are going to make channels in the pillow case to hold the socks in place.

I would mark the location for the stitch witch with pins, insert the stitch witch between the two sides of the pillow case and iron it in place. The stitch witch was only about 3/4 the width of the pillow case so that I could still maneuver the weighted sock into the channel (and back out again as needed). Repeat 5 times so that you end up with 6 channels.

Insert the weighted sock into each channel and zip the case closed.

If you wish, you can also use a standard queen size pillow case to use as a cover.

The whole thing took me about an hour or so.

To Retain or not to Retain

We had our second IEP for Monster today. It was kind of funny how we found out about it. I had emailed the Special Ed director for something else (and event) and she casually mentioned "see you this afternoon", to which I replied "for what?". Apparently there was an oops somewhere and we never got our notice. No big deal (at least not here). My boss is very flexible so I took a half day (not a hardship since I'm currently battling the spring cold).

I was once again struck by how different our IEPs are. Mr and I both feel like we are actually a part of a team. When the school recommends something, there is such a feeling of trust on our side-something that we never really had before. Partially because they have suggested things that we were trying to fight for previously.

Ok, back to today's IEP. It started out with the special ed director bringing up what is, generally, speaking, a very touchy subject. She wanted us to think about holding Monster back-having him repeat first grade. Mr and I had discussed holding him back and having him repeat kindergarten-so he could mature a bit more socially.

This is the same reason they want to hold him back-to allow him to mature a bit more socially. They made a very good argument. First off, his play skills have been emerging. Apparently in his speech and OT he is playing with different toys and interacting with people. Second, since he has been through first grade already, he would be more comfortable and be able to participate in the class more fully. They are also concerned that second grade has a lot less play involved and it may be even more overwhelming for him. The way I interpreted it is that holding him back will allow him to develop his social skills more and give him more confidence for when things get harder in second grade.

No decisions were made today. We need to think about everything and there is a lot to think about.

I have to admit that I'm feeling very resentful, for want of a better word, toward our old school. A big reason Monster is doing so well right now is because he has good peer models. One of his biggest motivations is seeing other kids doing things. Even though Mr did an awesome job of getting Monster out and about, he wasn't exposed to the same kids and the same routine on a consistent basis. He had no typical peer community to emulate and observe. I often wonder how much farther along he could be if he did have that when he was younger. That sort of thinking, however, doesn't get anyone anywhere and I really need to just let it go.

Looks like Mr and I have a lot of discussions and thinking to do.

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:

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.

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.

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!

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!!!

Perceptions and Assumptions

One of the biggest challenges parents of children on the spectrum face, in my opinion, are the judgments and assumptions by other people who have little or no clue. Most of our children appear "normal". They don't use a wheelchair or have any characteristic physical features that say "disabled". So when Monster has a meltdown, we are just as likely to get the stink eye from passers by as the parents who can't control their spoiled little brat as we are the pitying look.

For the most part, I can ignore it, assuming I even notice anymore. As a self-defense mechanism, I tend to hyper focus on monster (probably too much so) when he starts a meltdown in public, maybe exaggerating what I do to calm him down to show that he is not "normal". I also try to give other parents the kind, understanding, look when other kids get out of hand, after all, I don't know what challenges that family may have been experiencing that day.

All in all, I consider myself fairly accepting and a bit Pollyanna-ish (just ask my friends at ihmmb).

Which is why I'm having a tough time with what I saw (and felt) yesterday.

We were at 6-flags again, indulging Monster in one of his favorite activities-go carts. One of the single drivers, a young man in his late teens/early 20's by my estimate, spun out and crashed hard into the track edge. No biggie, it happens. Not long after he got righted, he did it again. Then a third time-for which he was kicked off the course. I totally understand the need to get him off the track, an out of control driver is dangerous. As he was pushed off the course, he steered a fourth time into the wall and the crowd cheered as he was kicked out. Many were annoyed, some were mocking. My first thought was "what a twit for driving faster than he could do so safely". I admit, I get very annoyed and pissed off at the little punks who race each, cutting folks off and yelling at slow pokes (like me, which is why Mr takes Monster out).

As the race ended, I walked over to the exit to help get Monster away before he melts down for not being able to ride again. I noticed the same young man who was kicked off the ride. He was walking in circles, mumbling, and flapping his hands. As his friends go off the ride, one of which was another young man who I noticed was driving slow and having a hard time controlling the car, he spoke in a slow awkward way that was reminiscent (to me) of someone who has difficulty speaking.

I have no idea what special needs this young man had, nor those of at least one of his friends who I also suspect was developmentally disabled, though I'm sure at least one, if not both of them were disabled. My first thought was of shame-how can I, of all people, get caught in that judgmental trap of just assuming that a person is "normal" but acting like a jerk? After all my preachiness online about seeing past the obvious and trying to be more understanding, there I was being a judgmental bitch who silently agreed with the jeering crowd-that this young man was deserving of public humiliation. Even if he wasn't disabled, why had I jumped on the annoyance bandwagon? There was nothing overt in his behavior or demeanor that suggested he was deliberately trying to be a jerk by losing control. In fact, at the time I wondered if he just didn't understand English enough to figure out the signals and rules. Not everyone is good at driving those cars-I'm certainly not (which is why I try not to drive them). What a hypocrite I was to preach at others to look past the obvious and yet there I was doing that exact thing.

My second thought was that that kid could easily be Monster in about 10 or so years. Heck, to some extent, it's Monster now. It reminds me that in addition to teaching him how to try and find his way in this world, that everyone is different and it's ok to be different or to have struggles, but that he must also be patient with those who don't get that. Not only does he have to accept himself for who and what he is, but he has to accept (and ignore) that there are others who won't accept him no matter what; that he may be laughed at or mocked just because he is different. I remember how tough it was for an overweight geeky girl to do that in high school, and I was smart enough to understand, at least to some extent, that those people didn't really matter, nor did their opinions of me.

The thought is overwhelming. Sometimes I wonder why I'm fighting so hard for him to have an opportunity at a "normal" life when that path is so much more dangerous to him, in the long run. Not that I have a choice, this is the world in which we live and I need to prepare him to live in it. But am I setting him up for failure or success by trying to integrate him as fully as possible with the rest of the world? To tell him he can try to do and be anything he wishes-even if he fails at it.

If I can be as judgmental as I was yesterday, how can I ask the rest of the world to be accepting of him?

I can only hope that I can work past my own assumptions and perceptions and "become the change that I wish to see".

Go Diego Go

As I am home full time now, thanks to my current job ending and my next one not yet beginning, I'm getting to spend a lot of time with Monster. He is being pretty accommodating by developing new skills while I am actually around to see them (for a change).

His latest talents have been intimately linked to Noggin's Go Diego Go. One morning, by happenstance, Mr. turned on Noggin while this show was on. Monster use to love to watch both Dora and Diego episodes, a few years ago, before he "graduated" onto Disney. This time, he was different. He actually watched them. It started with the episode about condors when he would watch and then say "condors, condors, condors" and started singing the theme song, with his version of Spanish.

Go, Go Diego.

Bamose, Bamose, Diego.

I want Condors again, pease [sic]

Then he got interested in the rainforrest race episode, where he told us about the armadillo, pumas, bears and monkeys. He had this story in one of his beginner reading books and would point everything out to us while he was "reading" it. The big difference, though, with his watching the tv, he started doing the actions with the characters and shouting out the words at the correct interval. In technical terms, he interacted with the show in an age appropriate way.

Mr and I sat there stunned. We looked at each other and were nearly bawling our eyes out.

Wonders upon wonders, he seems to have linked the TV show episode to both the book he reads and to the Smart Cycle (electronic toy that hooks up to the TV) Diego game that he plays.

In technical terms, he generalized.

In emotional terms, he connected a few dots.

As with everything, it is a blessing and curse. He wants to obsess on these episodes over and over again and surfs on the edge of a meltdown when he has to do something else. But I'll take that, thank you very much.

His therapists and teachers have been telling us how well he has been doing, even if his behaviors at home are a bit moody. I hope we can keep this going during the move.

Sparkler's red yellow and green glare

First off, this is being posted from my iPhone, which is pretty cool.

Today is the 4th of July, time of celebration and remembrance of the founding of the United States. Americans celebrate our declaration of indepence from what they view as the tyranny of britian and King George. I suspect that the British government of the time likely viewed this differently, but as the saying goes, history is told by the victors. Given that nearly everything that could have gone wrong during the revolution, did, it is hard not to think it was destiny that this country ever broke free from their parent And survived it's infancy. Whether we survive our adescence has yet to be determined, though I'm hopeful.

But this entry really isn't about my esoteric ramblings on the state of the US.

I want to share what has been an amazing day for Monster and a blesed day for his parents. As those of you with sensory challenged children know, dya like today can be a miixture of grief (Because you can't share the joy and fun of fireworks), terror (of when the inevitable meltdown will take place), frustraton (at the never ending loud and bright noises keep your child awake or reawkens them) and exhaustion (after dealing with an overstimulated and out of control child all day). At least, that's always been our day until today.

We decided to take the chance of goin to the zoo, hoping more folks chose to go on to a BBQ than the zoo on tis beautiful day; a gamble that was correct. We bought some sparklers (fireworks are legal in our town) and stopped by grandmas' (Mr's moms) house on the way home. Dinner was uneventful and as the sun started to fall, I decided to try the sparklers. Monster was enthralled. Rather than shying away, as I thought he would, he was more ready to grab one and play with it. More ready than I was!

He waved his sparklers wildly (and a bit scarily), quickly getting bored with his mother's extreme caution. As soon as one burned out, he asked for more. He jumped and screamed in excitement at the fireworks going off around us ( we live on a hill overlooking several culd-a-sacs, where many blocks would shoot off their fireworks), looking around eagerly for the next bang and flash.

He suffered no fear.

No wild running around out of control.

No hand biting.

No tantrum when our meager supply of sparklers were gone.

When the last glare ended, he followed me inside and laid down on the sofa, where he fell asleep 10 minutes later.

An amazing and memorable day for me and one I hadn't counted on having. The type of day the feeds into my delusons of normalcy.

Happy Independance Day!

Bad Night-My fault? School?

Bedtime last night was horrible. It started out ok. I got home and he was talking to the computer. I worked in the garage, going through old toys and clothes-what gets donated, what gets tossed. He went downstairs without a problem. Was a bit hyper during Thomas, but not in a bad mood.

Then bedtime.

Oy.

He kept asking to go upstairs, screaming when I reminded him that it was bedtime. I could tell he was exhausted, poor baby. Mondays are especially tough on him and Sunday night, we left him to sleep in his own room, in his own bed. He woke up about midnight and seemed to be chatting to himself happily. We moved him back to our room and finished out the night, not too bad. When I dropped him off at school, he didn't want to go initially, but when we got to the classroom, he said he wanted to stay. One of the behaviorists, who had worked with him a lot in ABA, was one of the classroom aides, along with the two other aides (one of which I knew, but the other I did not, which doesn't mean much, I only drop him off on Mondays). The day seemed to go well. He had OT, a change it's usually on Thursday, and one moving company came by to estimate the upcoming move-another change. Mr. said Monster didn't want to go to the beach to play airplanes, which is odd.

All-in-all, not that out of the ordinary.

But bedtime, yikes! Mr and I both had to hold him down to keep him from either biting his own hands, or us. We both got pinched several times, I got it on the underside of my arm (ouch!). Monster was manaical. He was alternating trying to play and laugh with a screaming mimi fit. Song didn't do it, speaking calmly didn't do it, in fact that seemed to set him off more. Finally, I had him in a body hug and told him Goldilocks and the three bears (mommy style). He fell asleep between the too-soft mama-bear chair and the broken baby-bear chair. Mr. fell asleep during the porridge portion.

Total bedtime, 1 1/2 hours of wrestling.

Total sleeptime: 7 hours.

Monster woke at 4:30. Mr tried to get him back to sleep. I went down about an hour later (Monster actually stole my covers and kicked me out of bed) to see if I could help, but Monster was up and forcing me to hold to my promise of the night before "First sleep then up the stairs". He did his portion-sleep, now I had to hold to mine-up the stairs. Mr went up so I could try and catch a few more hours of sleep (I had gotten to bed about 1:30 after playing in the garage some more), but I could hear Monster starting to tantrum again. Very picky about how everything was suppose to be. I couldn't sleep with that, so I sent Mr. down for sleep and stayed with Monster, who settled down with Mommy around. I was able to cat nap for a few hours while he alternated playing on the computer and on his bicycle (a doohicky that connects to the TV). He was chatty, informing me he was saving pumas, armidillos and the like, cute and charming.

Finally, time came to get him ready for school, albeit a wee bit behind schedule since I was dragging so badly. We got to school and he was still fairly riled up. His favorite computer was taken. Sigh, at least he wanted to stay which means Mr can get things done.

I've been trying to think of the cause of this behavior. My initial thought was I kept telling different people how well he was doing, so Murphy's law kicked in to knock me back. On the logical side, it could be the gluten we pulled from his diet working its way out. It could be he senses the anxiety and excitement Mr and I have about the move. We haven't told him much, just that we are going on an adventure and he would be going to a new school, but he knows something's up. It could be the new schedule at school-it's ESY now and it doesn't seem to be very structured. They have the schedules up but haven't populated them with the student's icons. Monster looked a bit baffled and then decided he gets to do what he wants (yikes! Poor teachers). It could be having his old behaviorist in the room, and having to share him. It could be because he woke up in a different room without mom or dad on Sunday night.

The list is endless. More complicated than my blurry brain can deal with today. Mr is also a bit concerned about school right now, but he has so much to do. Losing that 3 hours everyday would make it tough for him to get what needs done, done. So we are taking a wait and see approach. Monster is going to have to do without school for a considerable period as it is, while we move and settle in, I don't want him to miss even more now.

Damn you, Murphy!

The Never-ending Wait

As we prepare for our move, the wait is really getting to me. I want to get on the road, to start the next journey. Most of my trepidation centers around leaving family, but even in that I look forward to the distance from the drama. My mother is very hurt and upset that we are leaving the west coast yet again. My head knows that this is because she cannot visit us after we move, indeed to do financial and health related issues, she cannot visit us where we currently live, but I know in her heart she longs to be in the Bay area. She has always loved San Francisco and if she could not live here herself, she could live here through us. Rationally, she knows this move is the best for us. I doubt she realizes how perfect of a fit it possibly is. Now that she knows it is definite, her response to remind me of how alone I will be out there-with no friends or family. Three days ago, she was comforting me on how we would do well. Today, she wanted to fill me with fear of what is to come. Oh well, this is not the first time we've danced this dance together. For self-centered reasons, we've always done what we thought was best for our little family-first just Mr and I and now with Monster. We've always walked our own path. Rarely doing what is expected or traditional. Why should this next phase be any different?

I harbor no illusions that my new job will be a cake walk. Indeed, I don't want it to be. I relish the possibility to start fresh, in a place that I already feel is home doing what I know, in my more arrogant and conceited moments, I'm good at. That old feeling of ambition has reared its head again in my soul. Those feelings that were, as I refer to them, pre-autism. The desire to show others what I know, to push my mind and knowledge to the limit to expand it. To solve problems, to investigate the truth-to find out what really happened; how things really work and are made, and why the break. I wonder if I'm setting myself up again-the way I set myself up where I currently (for 4 more days) work. I find myself reflecting again, on what could have been, what may have been, had Monster turned out to "normal".

I find myself almost grateful that he has the challenges he has, though. Not that I wish these struggles, either his or Mr and mine, on anyone. I don't. But because I know that I would have become a person obsessed with my own fame and success-as much as happens in my line of work-or at least my delusion of it. I would have eagerly sacrificed the relationship with Monster to feed my career. I never got that chance, or rather I never felt like I had that chance. In retrospect, I could have buried my head into the sand, kept on my path with the thought it was "all for the best" and lost out on what has become the most important relationship I have ever, or will ever, have. Perhaps I did make a choice, unconscious though it was. I've resented it, resented giving up that other dream and blamed it on autism, on Monster on Mr. In the end, I guess it really was my decision. And one, though I regret much of what I did, I don't regret.

And that's the unknown reward, the silver lining on this journey of Autism. The fact that you, as a parent, are forced to accept your child for who they truly are so early on in their life. Not who you wish them to be, or who you dream them to be, but who they are. The dreams, the delusions, don't have the chance to root and grow. Challenges, quirks, difficulties, triumphs, love, anger, rage and pain-each is a gift that I would have never been given had he been "normal". I know my son in ways that I had never imagined. I can read his moods, his mind, his happiness and fears, in ways that I would never have been able to do had I not been "forced" to become the Sherlock Holmes I've become (though I feel more like Watson most days).

So with my new-found self-indulgent insights, my impatience grows. I want to be on the road. I want to escape the drama of prolonged good byes, hide away from the pain of losing that which I've built here. It's time to start fresh, to see if I truly have learned from my mistakes and grow into the person I hope I can become.

I look at Monster, playing loudly next me. Giggling at who can guess what, at Mr. who is devastated at the US loss to Brazil (or what we think is a loss, Monster switched on his computer game before we saw the end of the match) and I just want to get on with it already.

Patience has never been a virtue that I possessed!

Monster's response to pain

A month or so ago (I blogged about it, but can't remember when) Monster had an ear infection. We figured it out fairly easily-he pointed to his ear and screamed himself to sleep.

Tonight, he was pointing to his ear again when asked if he had an owie, said yes-but instead of screaming, he was giggling. Normally, I wouldn't blog about something like this, but a message board post made me reflect upon how my son handles pain-and shows the world he is hurting.

Years ago, after we first got the diagnosis, I went to a lot of conferences, read a lot of books. I read, often, about how autistic kids had a higher than normal threshold to pain. I remember hearing stories about kids who had broken limbs but didn't react to them, kids who had severe ear infections and never complained. I wasn't there; these weren't my children so maybe they did indeed have a high threshold for pain.

However, I disagree with the general statement that people with autism have a higher threshold. I think they just express those feelings in a different way. They may not process "pain" the same way neuro-typical people do, but they do indeed know something is not right-something is off or different or, yes, even "hurts". Pondering this always leads me to the same rhetorical question, What is pain? If someone from another planet (who happened to speak english) came to Earth, how would I explain what "hurting" or "pain" is? What words could I use? I'm not clever enough, or intelligent enough, or wise enough, to come up with a way. You just know, don't you?

When my son was younger, and less verbal than he is today, he would express overwhelming emotion by biting-mainly me. He would bit me when he was very happy as well as when he was very mad, very scared or very excited. He wasn't trying to be mean (or rather, he wasn't always trying to be mean), he was just trying to release excess emotion. To this day, his default setting (when he is too overwhelmed or too tired) is to bite himself-not just in anger or frustration but when he is very pleased and excited.

With our kids, ok, at least with my kid, the obvious is not always that obvious. Giggling can be the sign of pain and biting can be the sign of happiness.

Never a dull moment in the life of a furnace mom ;)

Gettin More Organized

You would think that after 4 years I would be more organized than I am, but I'm not. I have a theory that since the entropy of the universe is constantly increasing, every time one of you out in the world get organized, I get less organized so the universe is kept in balance (you can thank me later).

Anyway, with the move coming up (whoa, was that weird to say) and us playing around with Monster's diet, I've put together a food/behavior diary. Now I started one a few weeks ago, but it was more or less just me and Mr. jotting down what we noticed in a free-form way with Teacher filling out what Monster got into at school (his food at home is fairly constant).

I've started McCarthy's new book and she had a really good suggestion for what to keep track of. Being the engineer I pretend to be, I put together a MS Word document and put it in a binder (I swear, I have a million binders breeding in my garage!). Here it is (well, not formatted but you get the idea of what it says, I can email it to anyone who wants a copy, just let me know either by comment or email/PM me):

Date:

1. BM(bowel Movement): Yes/No Size (1=small to 5=large) Difficulty?

2. Supplements: What Dosage AM PM

3. Sleep: Amount Quality (1=good to 4=restless) Number of wakings Problems (explain)?

4. Rashes: Color Size Location Onset/duration Antecedent

5. Evenness of Temperament: (1=even to 3=typical to 5=swinging)
Comments:

6. Irritability: (1=pleasant to 3=typical to 5=cranky)
Comments:

7. Checking out: Type (fixation, staring into space, other-explain)
Frequency/Duration
Comments:

8. Flexibility v. Rigidity: (1=rolls with things to 3=typical to 5=must get own way)
Comments:

9. Self-Injurious behavior:Type (bite/pinch/other) Severity (1=light to 5=severe)Duration (1=several seconds/can distract to 5=several minutes cannot distract) Antecedent(if known)
Comments:

10. Food Diary:What Amount New? Reaction (if any)

We'll see how well this works and how well we can keep it up. Monster is on Day 2 of no gluten and so far so good. He has been very particular (and vocal) about what he wants to do and a bit whiny. I keep telling myself that as his behavior gets a bit grumpier, that's a good sign that the gluten was affecting him and now it is working it's working its way out of his system.