Swimming

There have been lots and lots going on since the last blog entry, but I'm not ready to really blog about it (nothing bad, just a lot for me to process).

So I've decided to just post a bunch of swimming videos ;)

Enjoy!

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.

Guess What? Monster has autism.

I admit, I couldn't think of a good title.

There are some characteristics that are associated with autism spectrum disorders.

1. Lack of social awareness
2. Difficulty communicating
3. Requiring rigid routines
4. Concrete thinking

Yeah, there are more, but those are the ones I think of as fairly common across the spectrum.

Monster was unofficially diagnoses with autism when he was 4 months passed his 2nd birthday. He got the official diagnosis when he was 3 and his diagnosis was confirmed when he was about 3 1/2. However, because he lacked the ability to communicate effectively with us, it was always hard to determine how he viewed the world. In the past few years, his language has improved so much. Even more, he has gotten better and better about expressing his emotions. A few weeks ago, he asked me for a magic wand. since he watches a lot of Disney movies, I'm sure he has a good idea what a magic wand is. Anyway, I got a stick off the ground and gave it to him and he proceeded to wave it around for a while (it really was cute to watch).

Last night, I picked up a stick and told him "look, a magic wand". I had pointed it at him and started signing "bippity boppity boop", but he got very scared and wanted me to point the wand somewhere else. I'm sure he thought the wand really was magic and I was going to turn him into something. I then had a discussion about him regarding pretend vs. real, of which I'm not sure how much he understood since he kept giving my stick a wary look.

So another check off of the list-Monster is a concrete thinker, though coupled with a rich and amazing imagination.

So, yup, Monster has autism ;)

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-Part 4 (will this ever end?)

Well, I had a brief glimpse of the promised land earlier this summer. For a long while, Monster was going to bed, in his bed, with little or no fuss. We even had stretches of DAYS where he went to sleep on his own.

A big part was summer camp. He loved camp and would come home so bloody exhausted, he wouldn't have any problems sleeping. Finally, something that provided enough sensory input and fun that he was comfortable. I think the kid really is a whale-or has the soul of one. Keep him in water all damn day, and he is comfortable and happy.

Alas, nothing lasts forever.

It all started when I started traveling a bit more for work. I've done occasional trips in the past, but over the last 4 weeks, I've been gone about 7 nights-and the first trip I was gone for three nights in a row. One night, he started crying in that heart-wrenching way as if his best friend had died. After that trip, he was a bit more clingy than he had been, but he was still in camp. Then I went away again, just for 2 nights. His clinginess got worse. I wasn't allowed to sit in the next room, but had to be in his room with him. I would have to tell him where i was going (to the kitchen to cook, to the bathroom) and even then, he would come and check to see I was there every few minutes.

Then the surgery (see last post). For a few nights, I had to reassure him that he wasn't going to the doctor's the next day several times until he would go to sleep. He also has been telling me "no school", now that camp is over.

And now I'm, once again, gone. Mr texted me tonight that Monster just wasn't going to sleep, he wanted his mommy.

So it feels as if we are back to square 1, with the added torture of knowing what a "normal" bedtime is like.

In so many ways, it was so much easier when he was living in his own world. He didn't notice or wasn't interested in the rest of the world. That's not really correct, though, is it? He just couldn't express himself then, the way he can now. I wish I didn't have to travel without him and Mr. But seeing as we need my salary, and this job allows us to live in the school district of my dreams, we'll just have to find a way to get through it all.

Dental Surgery

It has always been a struggle to get Monster to let anyone look in his mouth. When he was younger, the danger was him biting anything (especially fingers) that came between his teeth. He's gotten a lot better with time and maturity. He will open his mouth for the doctor to look in his throat, let us brush his teeth and look in his mouth, things that.

A few months ago, it looked as if some of his teeth were chipped or broken. We made an appointment with a pediatric dentist (who was awesome-did the whole examination in about 5 minutes and started out with "No guilt is allowed, you are here now") who said his four primary molars were rotted and had to be removed, and that his secondary molars had cavities that needed to be filled. He advised we have Z put under to have the extraction completed-given his autism. A next option would be for an oral surgeon to do it with gas or the ped could do it in the office (no pain meds). We started with the "putting him under" option. The pediatric dentist sent us to a clinic in Providence. Our appointment there was a few weeks ago. That dentist got Z to allow him to look with the mirror doohickey (first dentist didn't use one at all) and agreed with the extractions but said the secondary molars would likely need crowns. We went ahead and scheduled the surgery.

Today was the big day.

Monster didn't want to go to bed last night. He was more clingy than usual. Since I've been traveling a bit the last few weeks, he has not wanted me out of his sight. He follows me to the bathroom or the kitchen. He'll check up on me if I'm in another room every few minutes and yesterday when I got home, he came out of his room and said "mommy, in here". He didn't want me to let the dog out and I was suppose to stay in his room with him. Bedtime was tough, we think he had a headache. He wanted "4-mommy and daddy and zachery and diego". Which is a tight fit on a queen sized futon.

He did sleep all night-which is not normal-in his own bed. I had to wake him up at 5:30 this morning. Why is it that on weekends, he is up 4-5 am but the morning we need him up he decides to sleep in? Waking him up isn't easy. He has too much of me in him. We get him up and to the car. Now we are running late (which is typical) and Mr figures he needs to speed the whole time to get there at 6:30 (as if they are going to start without us). This freaks me out, so I spend most of the drive trying not to panic and scream at him.

The hospital is great (Our lady of Fatima in N. Providence) and they have experience with children with autism.

Once we got there, the lady behind the desk was wonderful as I went slightly panicky-couldn't fine insurance card, etc. She kept saying "don't worry, no rush". Finally got the paperwork finished and were ushered back (took a bout 5 minutes, it just seemed longer to me). When we got there, Z apparently didn't like the little TV w/ VCR they had. He wanted to leave. He asked for a "new TV". Eventually, he calmed down. We brought his portable DVD player (which he generally isn't allowed away from home).

They had the hospital pj's waiting, but they said if he wouldn't wear them, no big deal. He was a trooper and put them on. He even put on the slipper socks. He let them take his temp, his O2 levels, etc. He kept asking to leave, but we were able to re-direct him to his DVD player. All of the doctors came out and said hi, explained everything to us (even had a model of with teeth to show us what everything looked like). The anesthesiologist brought out the mask for us to play with-DH breathed through it, then me, then Z. We even got Z to hold the mask himself.

When we asked, Z asked for Mr to go back with him instead of me. Mr put on the lovely gown and hair net. Z did NOT like M wearing that "hat". However, I asked Z if he wanted to wear a "hat" and he said yes. Then he proceeded to amuse the doctors by pulling the hair net over his face, peaking out from under neath it and smiling-Z being charming.

He started to freak a bit when we moved the gurney to the OR, but they were cool about his bringing his DVD player into the OR (until he fell asleep). M told me that everything was fine until they put the mask on-M did the "daddy's turn, Zachery's turn"-but when it was Z's turn, the mask had to stay on. M said he held Z's hands, another doctor/nurse held his shoulders and Z glared at M (all of this according to M, since I was left in the waiting room).

So now we wait. Doc said they are going to first take x-rays, then clean his teeth. Likely 4 teeth pulled, 4 teeth crowned and 4 teeth sealed with 4 spacers cemented into place.

For your amusement, here are some pictures I took while we waited:

"Go this way"-out of pre-op



Chilling out waiting





Daddy's turn:



Z's turn:





Z got upset when DH had on the blue hair net, so I asked if he wanted one of his own. Here he is in his awesome blue hat.



The surgery took 4 hours. 4 very long hours for me. Doctor came out to talk to us and said Z was waking up fast. She told us it all went well and gave us the rundown on care and the next appointment. In the end, he did get the 4 molars pulled, plus one of his upper front ones (which was very, very, loose), 2 crowns, 4 spacers, 6 back teeth sealed.

Z was crying, with blood drooling from his mouth, watching a Disney movie and just looking pathetic overall. He started crying when he saw us and M picked him up and put him in my arms. Z sat there, curled up, dozing for about 30 minutes. Then he asked for his DVD player. Then for water. Then to change his shirt. Change his pants. Go home. It was a very trying final 10 minutes before we were cleared to go. In that time, he woke up enough to drink two glasses of water.

On the way home, we passed by a Golden Arches, so he asked for french fries. And soda. We let him have both. By the time we got home, he had drunk a medium diet coke from McD's and a medium order of fries. When we got home, he put on his shoes and ran to the door. He did (briefly) crawl into bed (for like 2 minutes) before moving his DVD player and the like to the corner closest to his DVD collection.

We've been home 5 hours now and he's eaten yogurt, veggie booty, veggie chips and another order of french fries. He's watched DVDs, Jumped on his trampoline, done flips and rolls, run around, taken a bath and is currently playing on his computer.

Little dude's a freak of nature, I tell ya!

Bedtime Battles Part 3

I was right. A big part of the bedtime battles was his not wanting to go to school. Since school has been out, he has (for the most part) been able to fall asleep, in his bed, within 5-10 minutes of bedtime. Since camp started, bedtime has gotten a lot easier.

We did push his bedtime back a bit-mostly because he needs the room to be dark-but he is falling to sleep sooner. It's really the camp, though. He runs around and plays outside, in the heat and water, for 4 hours every day. Poor kid is exhausted when he comes home. The only downside has been that we tend to let him zone out more in the afternoon-stim on dvd's and the like.

Of course, we actually went puddle jumping together IN THE RAID the other day (and last night). Previously, Monster hated getting his feet wet. There were days we would have to carry him to the truck/school because he couldn't/wouldn't step on wet ground. He also doesn't like to get his hair wet (except when swimming) and hated going out in the rain. Two days ago, he was looking longingly out the door and I told him we could play outside in the rain and if wanted he could wear a hat (to protect his hair). He agreed to the hat (and wore one) and we went playing in the rain.

here are some pictures of him playing in the rain.

Bedtime Battles Part 2

Ok, just a quick note on the bedtime wars.

New strategy.

Monster goes to bed with iPod/iPhone for 10 minutes.

Afterward, he can choose to stay by himself or have mommy/daddy in their bed while he is in his bed. He has to stay laying down with head on pillow, eyes closed.

So far (been doing this for 3 whole nights ;) ), he ends up in my bed, but only when he is ready to finally fall asleep.

Next step, leaving before he is totally asleep. The biggest hurdle is I'm pretty sure there is a sensory component that I'm missing. I think something like the weighted blanket or mummy bag (sleeping bag that is tight on your body) will work, but he has to consent and right now he isn't ready to want to go to sleep, yet.

2 more weeks of school (10 days total). We'll see if things get better then or if I've just been deluding myself!

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.

First Grade Musical

I haven't been blogging very much recently. Not that I don't have a lot to say, but I can't seem to find the words. A lot has been going on with our family, some good, some bad, some just life. Ok, mostly good and mostly just life, the bad is generally of our own making and related to our attitudes, which we are working on.

On the life/bad side, Monster's anxiety has really ratcheted up in recent weeks. If I were going to be melodramatic about it, I would say it is "completely out of hand" (which is what I originally wrote before editing). But it's not "out of hand" or out of control. It's just, well, more. He has a tough time not knowing where Mr or I are if we are at home. He seems to have to be able to see us on demand-so if he looks, he wants us to be where he thinks we should be. He has always not liked us taking showers around him, now our uttering the word "shower" can send him into a meltdown, or at least 5 minutes of him adamantly telling us no one is going to shower, which him only relenting when we agree, "no shower". One morning, when I was on my way to a water running class, Mr said something about me wearing my bathing suit (I had already put it on) and Monster had a fit. He was very scared or worried that I had my swimsuit on. I eventually got away from the house, but for the next few days he would constantly check to see if I had my swimsuit on.

Nights have gotten weird. With the time change, we have to face the problem with him not wanting to go to sleep with the sun still out. Then, a few weeks ago, Monster decided he needed both of us in bed with him. "Three", he tells us. Then, just in case we haven't learned "zachery speak", he will continue "Mommy and Daddy and Diego in the bed". On nights when we can't all be together, he will drive the attending parent a bit bonkers waiting for the other parent to get home. Once in bed, he is also very specific. He will say "Mommy here, Daddy there". Once asleep, we do put him back in his own bed. And every night, he climbs into the big bed at some point and becomes an octopus. If we haven't gone to bed yet, he'll come out looking for us.

In my more saner moments, I actually rejoice a bit in his behaviors. Instead of just having (what appears to be) random meltdowns and acting out that Mr and I have to try and figure out, he's telling us what he wants (though we still don't understand the why). When he has his crying tantrum over homework, I remind myself that he is telling us "no homework", "homework all-done". I do believe that his increased anxiety is related to him actually seeing the world around him and his trying to figure out his place in it.

Up until now, I've been able to ignore the social aspects of things. I've been so focused on him learning how to communicate, him having the right sensory experience, teaching him how to recognize when he needs certain things, etc. Now I'm finally starting to think about the future-those social parts I've been ignoring. How do I help him learn how to make friends? How am I going to answer him when asks about his differences? How am I going to deal with the fallout when he gets picked on? How am I going to know when he's feeling down or when he's having trouble? What happens when Mr and I aren't enough for him? We live in a fantastic community, but we don't have a local support system. We don't have people we can turn to for help, for comfort, for companionship. It takes time to develop those relationships under normal circumstances. When you have a special needs child, you seem to be even more isolated. When you are the newcomers, who live a very non-traditional lifestyle, well, things can be a bit more challenging. We've only been here 6 months, things take time.

:shudders:

Enough maudlin talk. We have a roof over our heads, food on the table. We live in a wonderful, beautiful town in an amazing state. I have a great job, which I enjoy and Monster is going to a school that is beyond whatever we could imagine for him in California-and it's a public school at that!

Monster was in his first school musical. It was the First Grade's tribute to music from around the world. Individual kids said a few words before each song and each of the classes were featured by standing in the front. Monster's class sang seventh with "Cockles and Muscles" (Which made me think of his grandmas). Monster got to play the xylaphone with some of the other children-up front and center. He missed some of his cues, played when he shouldn't have, but it sounded like heaven to me. He danced (and fell off the stands once-but got right back up), he sat when he was suppose to and stood when he was suppose to and clapped when he was suppose to (well sort of). It was magnificent.

It was a mid-morning performance and the house was packed. Many families were able to make it and you could see siblings, grandparent and parents all there. The program was 8 songs long (with one encore) and lasted about 35 minutes or so.

Monster stood with his classmates, on the end. We found out later that his aide was in the wings, next to him, but you couldn't tell during the performance. He was delightfully, wonderfully, happily average. Sometimes he paid attention, sometimes you could see him mentally wandering-as were other kids. He didn't always sit or stand immediately on cue, but neither did the other kids. He would dance, do the motions and not sing, as did other children.

When we were in the midst of the Great School District Battle, I never imagined that Monster would be standing on a stage with the other "normal" first graders, bouncing off-beat and having a great time. I felt so very "normal", except for the tears that wouldn't stop leaking from my eyes. We do have some video, though I'm not sure how good a quality it is. If it looks ok, I'll post some of it.

The challenges have gotten more difficult as he's "gotten better" (for want of a better phrase). I feel off-kilter, again, similarly to when we first started down this path. I think that's what is throwing me into a tailspin. After 5 years, I would expect to feel more in control, more capable, more competent. But I don't. I feel just as out of my element now as I did 5 years ago. Ok, that's a bit hyperbolic, isn't it? I'm older now, more mature, more educated on autism and I have a much thicker skin than I use to have. And I have my son, now. He's with me where he use to be in his own world.

Boy, do I need to keep remembering that. Things are going to be fine as long as my son is here, with me.

Weekend of Rapture

We so rarely have a perfect day, let alone a perfect weekend. This weekend was as perfect as things get. Monster went skiing, skating and watched a movie in a theater. If that wasn't enough, he also slept through the night each night, was generally charming and kept Mr and I in stitches laughing all weekend.

Monster's aide, V, suggested we take him up to a ski resort to show him some skiing and try and get him to stomp around in ski boots. Mr and I had planned on getting him started skiing next winter, so we thought this was a good way to sort of introduce the subject. When we got up to Yawgoo Valley, Monster was so interested in trying things out. Mr. went to rent some boots and the like, when he spoke the manager and found out something wonderful. All of the ski instructors had just completed training for how to teach special needs persons. There was even one instructor who had had previous training. So we signed Monster up for a 30 minute lesson, fitted him for the equipment and crossed our fingers.

She (the instructor) was amazing. He was amazing!!! He went with her, without even looking back. Mr and I had to stay off the snow, down at the bottom. We stayed where Monster could see us, but he didn't check in with us very much. She put him in boots but he wanted to put on the skis. his instructor said she had to hustle to catch up with him when he put on his skis. He would take off his skis and wander around, and she would take her skis off and walk with him. She explained everything to him, what the different trucks were for, the tow line, the ski lift, everything. Their 30 minute session turned into an hour. During that time, they went up the tow line about 6 times (one shown in the video below, Mr was the camera man, so be warned, you may get a little motion sickness), ski around and even sat and watched the ski lift for a while. He really loved being with her and really listened to her. Unfortunately, it was probably the last weekend of the ski season (although we did sign him up for one more lesson next weekend if the snow holds out).

Monster after he put on his skis for the first time


going up the tow line with teacher:


But wait, we weren't done yet! After skiing for about an hour, Monster wanted to go ice skating! He has come so far in the few months we've been going each week. Since we bought him his own skates (and finally got him the right size), his skating has improved and he's skating more and more on his own.

This is my favorite video of him skating. it really shows how good he is getting. He gets going really fast next to the wall, just skimming his hand along. He also gets going pretty good away from the wall. We are now starting to work with him on stopping. He can get going pretty fast, then realizes he is going fast and can't stop. it is so funny to watch!



We got home after stopping for some food and Monster went straight to bath and bed.

Sunday was nearly as wonderful. We went ice skating again (ice skating is monster's latest obsession). Afterwards, we decided to go to the movies. We had great success with the Princess and the Frog on Christmas Day, but we've had little success with non-animated features. Regardless, we decided to go to see Alice in Wonderland. It was rated PG-13, and there may have been some things in there that a bit dark for a 7 year old, but he sat through the entire movie and except for the first 5 minutes and the last 5 minutes, he actually watched the movie.

All in all, a magical weekend.

Playing Sherlock Holmes

Wow, it's been a while since I've blogged. Things have been very busy between home and work. On the work front, I got to spend a delightful, fun filled (not the sarcasm) week in the paradise of Iowa. It seemed like a nice place, but extremely cold and I spent most of that week outdoors in single digit weather.

"Playing Sherlock Holmes"

One of the things that any parent of a non-verbal child needs to learn is how to be a detective. Since your child can't speak, or doesn't know the right way to express him or herself, he or she can't say "Mom, my throat is scratchy" or "My tummy hurts". So you need to look for clues and deduce the problem.

Unfortunately for Monster, it seems I'm more like Dr. Watson than Mr. Holmes, but thems the breaks, kid.

The first thing that you notice is that he/she is acting out of the ordinary for them. For example, Monster had been going to sleep around 8 or 8:30 watching a movie. We then moved him to his own bed where he slept until about 4 or 5 in the morning when he crawled over to the big bed. He then slept until 6:30 or so the next morning. That has been the pattern for a few weeks, maybe since about mid January. Last week, however, he woke about midnight and didn't want to go back to sleep. He would then eventually fall asleep about 2 or 3 (or maybe later) in the morning.

Once you've established that something is off, you go searching for any and all clues. Monster has been having a problem focusing in class. He has been more resistant to activities he generally likes, he has had more meltdowns, he has been fixating on things more often and is more resistant to transitioning away from them, and he has been needing both Mom and Dad to be around in the morning this past weekend. Physically, he has been congested at night, he has had multiple cold sore outbreaks and his riding coach said he was leaning to one side on the horse (to her this suggested a potential ear infection or balance issue).

Ok, you now have a list of "symptoms" (sorry, I should mention I've been watching back episodes of House). Off to causes. What has been different? Have we switched up his routine? Did they start something new in school? Did he start eating a new food? Well, Mom was out of town for a week. That was a big thing so I'm sure that had some impact on the focus, sleep and meltdowns. We also have been reducing the amount of time he spends watching DVD sneak peaks and home videos of himself-both of these activities were very "relaxing" to him because he could "check out" when he did them. As we did that, we also increased the amount of time he spent playing-building things, playing board games, playing ball, reading, etc. This does require more focus, more interaction (which = more self control). We also eliminated a lot of the trips to the library (where he would check out his movies). Monster has been requesting Daddy for night time duty and I've forced my way in a few times to do the bedtime routine (even though he wanted Daddy). He had been swimming a lot, which reduced the amount of epsom salt baths he had per week (he showers at the pool rather than getting a bath at home). And he had a nasty, lingering cold over Christmas.

Now comes the hard part. How does the list of symptoms match with the list of changes? What change is causing what problem and how do we fix it? Mr and I are still trying to figure this part out at the moment. We've switched Monster to a sleeping bag with a heavy blanket to help keep him asleep longer (so far, mixed results, one night I put his pillow in the wrong spot, which caused him to wake up; another night I put the blanket up too high on his back). We've opened the door to his room a bit to reduce the temperature inside (another reason he was waking up). I do think getting a better night's sleep can reduce a lot of stuff. However, the focus problem can also be caused by the cold sores hurting. In addition, a lingering cold can turn into a sinus or ear infection. Unfortunately, Monster rarely presents with a fever, even when he has an infection. We rarely know about it until he hits the completely lethargic state. Of course, these days sinus and ear infections generally warrant a "wait and see" approach, rather than antibiotics (and I agree with this approach), so there wouldn't be much we could do anyway. Still, we may take him in just to eliminate this as a cause (or rule it in). Not something we really enjoy doing during flu season.

Of course, Mr. got a haircut, which can throw Monster off (because Mr. looks differently). Monster has been a lot more picky about my hair lately, so I know Mr's hair cut threw him off a bit. Plus we don't know if there were any small changes at school-a classmate being out or getting a haircut, a new unit in PE class, etc. Or he could just be gearing up for new breakthrough. He told his speech therapist he was "mad" spontaneously one day.

We'll figure it out eventually. Then we'll have a few days or even weeks of somewhat peace (or at least predictable routine) before the next great mystery arises.

Now, for the reward of schlepping through my ramblings. Monster ice skating :D

This is the first weekend we went:





This was this weekend



Monster flying solo:

Just Another Saturday

Though we had a crazy week, the weekend was remarkably uneventful. Friday night we asked Monster if he wanted to go horseback riding on Saturday and he said yes, so we went to our normal time. He did ok, but got very upset rather quickly. First off, it was very cold and he wouldn't wear his hat or mittens, although he will normally wear them. More importantly, I don't think they do enough riding during his lessons. They do a lot of work with stretching and playing basketball, etc. (see previous blog on it). It seems to me that he really loves the actual riding part and he just doesn't get that much in this class. Mr. is going to try and find something else that let's Monster do more riding.

After riding, we decided to check out the Hartford Children's Museum. That was a lot of fun. It is the closest place I've seen to the Exploritorium in San Francisco that I've seen yet. He really enjoyed a lot of the activities there, including a really cool klaidiscope room (picture above). I know the video is dark, but Monster is making faces at himself in the mirror here:

Back to School Blues

Monster went back to school this week, and man has it been tough. Everyday throughout the winter break, he would say "No School" each night. Eventually, one night we couldn't say "no", but instead said "School in the morning".

He had a very bad night that night. He woke up about 1:00 am and didn't go back to sleep until 6 am. He pushed every button that Mr. had. Since I had hurt my back recently, Mr tried to let me sleep, and I did (albeit not that well because of the pain). Eventually, I woke up to them fighting and brought Monster back into bed with me where I was able to get him to sleep. We tried to let him sleep as late as we could (rather we all tried to sleep as long as we could) and he was about an hour late for school, but we still made him go. We were concerned he would try to stay awake hoping to get out of school the next day.

Monday night rolls around, and after the movie, we go back into the bedroom. I asked him where he wanted to sleep (Mommy's bed or Z's bed) and he said his bed. However, he almost immediately asked for Mr to help him go to sleep. I think it took Monster about 15 minutes or so before he pushed Mr right over the edge. I intervened and Monster went to sleep relatively easily at that point. Unfortunately, Tuesday wasn't a great day at school-he bit and pinched his teacher. Nightime was also difficult (again). He wouldn't settle down during the movie and eventually I made him go to his room because he was winding himself up with the TV (I suspect all of this was to keep himself awake so he didn't have to go to school. Not that he connected the two, but he wasn't going to stop trying to get us to agree that he didn't have to go to school). Again, he wanted Daddy. (I told Mr. that Z broke him, and that Mr was the easier one to push over the edge than I was-which is a switch. When he doesn't want to go to sleep, Monster will try and anger me-or Mr in this case-so that he can feed off of our emotions). This time Mr. got him to sleep easier-although in the "big bed" and not Z's bed.

Apparently, Monster was better behaved (though more distracted) at school today. However, he wanted to go home at 2:00 (school is out at 2:20). I suspect this is going to get worse this week and Monday is going to be hellish getting him back to school. I would expect that he is NOT going to want to sleep on Sunday night again.

Anyway, since I like to end on a high note, here are some videos of Monster and Mommy sledding. As a bit of backstory, I hurt my back on Wednesday last week. It was slowly getting better until on Sunday, I felt fairly good and mobile. So mobile, I though for some weird reason it would be a good idea to go sledding with Z. Now, I was having no problems and didn't seem to have any pain during the entire time. Later, I realized I was fairly numb from the cold and when I defrosted, boy did my back hurt.

So here we are together, and Z alone, sledding.