A Family

This has been an amazing vacation for us. We have gone to Joshua Tree and climbed around; walked through the entire Living Desert; gone swimming; and gone for a hike where we climbed around on the rocks. In between, the boys have played in the sand at Grandma's house, played dress-up, and played in the house independently. Sam even slept till 5:30 today.
Not that I was up with him. Nope. That was my Dad.

My point is two things. First, the four of us have done things this week like a normal family. And had fun. The boys are just a little bit older and able to do more things. And secondly, I have the best parents in the world. Seriously. Next time I get irritated and self righteous, like the 12 y/o girl I used to be, I will remember the site of my Dad and my son, chillin at the crack.

*And because I know my Mom reads this, I will note that she has gotten up far before 5:30 on every other day.
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Plane fun

Well the 6 hour flight was LONG. The kids did really well, considering. The layover in LA was long and hard. The second flight was FAST. Waiting for Dad to get car and bags so we can finally get to the GRANDPARENTS!

Got up at 3:30am and am ready for a cocktail.
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3:30. Time we had to get up to catch a plane. 3:30. Time Sam woke up today. Giggling. Little person got up in the middle of the night and went PEE IN THE POTTY!

A dog like Kramer. We miss you K-dog. You would like it here.

Just watched Marly and Me. I know...but then you've probably never had a dog like that. A dog who was larger than life and there at the beginning of everything.

Activities

I need to figure out how to get Sam involved in at least one activity outside of school. Swimming is the obvious choice, but I don't currently have a lesson option. The old lessons at the JCC-now YMCA were great, but they switched the lesson times to weekends. We go away a bunch on the weekends, so that seemed like a bad idea. Now I am re-thinking that decision. Also, I paid for a membership at another YMCA, thinking Sam could go on Sundays when L comes to do respite. They tried it a couple of times, but the weekend staff (young lifeguards weren't super understanding of Sam's need to get in and out of the pool frequently and run around. M went and talked to them, and I think weekends may not be the best time. Maybe when I am unemployed after this week I can try taking him. I wonder if I can go without getting in the water myself? Next week we will be in CA, so he will get to swim a bunch. L said she would try again to take him when we get back. My other idea was to take him during Max's swimming lesswon, especially if I could get someone else (Grandma?) to come with me.
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New glasses

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4 Things I am grateful for...or How I fall asleep at night

1. My new glasses (that I already paid for...should they ever be ready.
2. Sleeping till 5:30. Thanks Sam!
3. Temporary moments of silence between the sounds of the swing I told him it was too early for.
4. CA for Thanksgiving. Grandma said "will you let us get up with the kids or are you going to use the baby monitors (we sleep in the casita, which has a separate entrance from the house). Of course I will let you get up at 4, Gram! Happy Hanukkah.
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I don't know how to do titles for my new BB posts...but otherwise this is kind of cool.

Hi-Tech!

I think I learned how to post from my Blackberry...

Chronological Order

4:45 am this morning: Sam wakes up, pees, and goes back to his room.
5:15 am this morning: Sam is up for the day. I give him access to the basement and T.V./computer and go back to lay down.
5:30 am: I put in an earplug and fall asleep till M wakes me at 7am. He got up with The Little Person at 6am.
7:30 am: M gets in the shower. Sam is running around "nudykins," I am informed. I am told He Is Going Crazy! This all appears to be true. The Little Person tells me he doesn't want me to go to work. He wants to go somewhere with daddy. He wants to go to Grandma's house. RIGHT NOW! I tell him I need coffee and that I only have 3 more work days and then I can be with him ALL THE TIME. Play With Me Momma, he says. We play dinosaurs and I tell him I don't like the word K-I-L-L.
7:45 am: M gets dressed and comes to get Sam dressed. Sam is not happy there is no school today. Either are we.

I support the military without supporting all of our military actions. That said, my cousin Matthew is serving in Guam and it goes without saying that I will be thinking of him today, as I do everyday.

Another haircut

So M gave Sam a haircut yesterday. He asked him if it was okay, and Sam sat right down in a chair in the kitchen. He got up a lot for breaks, and to brush off the hair, but otherwise did well. So he got a little bit of a shave...We may be brave and try it with a professional next time. But he looks cute. I will try to post a picture later.

The sleep thing continues to be an issue, but I am tired of thinking about it. Perhaps because I am just tired in general. Almost went to bed at 7:30 last night after the kids, but had a piece of chocolate and rallied to watch The Biggest Loser.

Sam had spaghetti for breakfast. He tends to eat protein earlier in the day. Maybe I should make him pancakes for dinner?

The case of the unfortunate early riser

Sam has been great. Much easier than The Little Person, actually. With one, large, exception. He awakens in the night to pee, and then gets up for th day in the 4am hour. Which has left us a little, delirious. So we cut out napping at school. We let him go to bed later, made him go to bed earlier. Not let him drink anything before bedtime, tired him out and just plain told him to be quiet and stay in his room. None of it works, it's getting worse, or more consistent, and we are at a loss. Have I mentioned that we are tired? Other than that, he's been great. Handed candy out with my mom on Halloween, even went to one, neighbors house, to trick or treat. So, my posts have been light because I can't think very well. Otherwise, can't complain. Had a good conference with his first grade teacher. Even volunteered to come talk to the kids about Sam. Mrs. C thought that would be a great idea. We'll see...

Had some friends/neighbors/family (mine and neighbors) over for pizza before trick or treating on Halloween. It went well, except for I think I freaked out a little and may have been a little un-hostess-like. M went to pick up the pizza, and folks started comming over. Sam was being Sam, that is, running around, pulling his pants down on the way to the bathroom, feeling that every computer in the house is his whenever he wants to use it, and I felt a little uncomfortable. Stressed out? People in my house (kind, lovely people) who didn't know mw, or Sam, judging us (in my head). Anyway, I'm used to him with certain people, but there were a lot of people (18 including the 6 kids), and M was gone and Sam was doing things and I think I snapped a little. Out of my own feelings of awkwardness? Unsure of what people were thhinkng, and unable to control the situation to my satisfaction. So, I feel badly that I didn't hold it together very well for a time. I recovered, and we had a great time trick or treating. In the end, it was the best Halloween ever, since kids, and I'm sure nobody has thought of it but me, because they are all nice, lovely people. But, there we are.

Early waking and middle of the night peeing

I have been lax in posting because...Sam has been getting up in the 4am hour as well as sometimes in the middle of the night. So we are...tired.Plus, I went to Mexico, which was so awesome I can't even believe it. But, back to Sam. Yesterday afternoon/evening we had some great family time. M was leaf blowing and the kids were really into it and standing in front of it with piles of leaves. Then we went over to our neighbors yard to watch them carve their pumpkin (both sides!) and run around. Sam has never been in their yard before...they live behind. He did great though, and it was a lot of fun. When M told him it was time to go, he ran back to our yard with no fuss. Then he M let him do some of the leaf blowing. Nothing like seeing your child running with a tool that looks like a chainsaw. Little person and I stayed a while longer and when we came back both kids were pretty mellow. M lit a fire and we snuggled on the couch watching Scooby Doo, with a dinner break of roast chicken, carrots and cous cous. Kids went to bed easily, and we watched Into the Wild. Pretty good, pretty, pretty good.

Apology

Sorry dear readers (if there are still any of you out there). It may sound cheesy, but I think of you all the time. I am just having trouble putting pen to paper. Also, to be honest, things have been pretty good around here. Sam has been affectionate and sweet, and while that is wonderful for us, it's kinda boring to write about. My only complaint is his early (4:15am Thursday) wake-ups. Today he slept till, wait for it, 5:45am! It was awesome, especially since I went to bed a little bit later than normal.

I am feeling a little guilty. Kid number 2 and daddy are at the circus. I am thinking now that Sam might have been able to handle it, so maybe we'll try both kids next time. Anyway, Sam and I are hangin at home, and I feel like I should take him somewhere or do something exciting with him...but it is nice to chill, and so much easier with one! Especially the (sort of) quiet one.

Tomorrow is the Walk for Autism, and the four of us are going to go together with babysitter extraordinaire to help. We have raised almost 3K, and I am proud, and almost excited to go. I'll be sure to update. http://www.walknowforautism.org/greaterboston/ami

Thanks to everyone who supported us with a donation to Autism Speaks. Considering the stats I heard recently (1 in 91 children, 1 in 58 boys), I would be concerned if I were having a baby right now. That's part of the reason we are participating in the Mass General/Tufts genetic study. Of course, I still have to finish the paperwork...

What not to do when you see a parent with an autistic/developmentally disabled child in public

1. Involve them in long conversation while said child is screaming, struggling or wandering off. We are trying to pay attention and not appear rude while also making sure the child is not running off into danger.


2. After saying "hello" to child, make repeated attempts to engage a child that is obviously unable or unwilling. This only stresses the parent out further.
   
3. Insist that the child follow rules that he/she cannot follow (get in line!). Most likely the parent is doing the best they can and unless they or someone else is in danger, that is their job, not yours.
   
4. Compare your typical child to a child with a developmental delay (My child does the same thing...). Your experience is not the same. Our whole world is about an experience that is unlike everyone elses. This does not mean you cannot sympathize. Quiet companionship, or "How can I help?" is most appreciated.
   
5. Offer unsolicited advice. It is okay to ask questions, but remember that the subject is very personal for us. Be gentle and respectful.
   
6. Judge us. Not until you've walked a thousand miles in our shoes.

* Now that I can finally sit down and write this...I seem to be forgetting the good ones. I'll add as I think of them...

Why We Don't take Him Anywhere

People are always encouraging us to take Sam places, whether it is a birthday party, or an autism fundraising walk, or the circus, or a cruise, or to the park to fly a kite, or a field trip. They (sometimes) gently tell us we have to try, that if we never take him anywhere he will never get used to going out in public, and sometimes imply that we are leaving him out by taking his younger brother somewhere without him.

In fact, we do take him places. First of all, he goes to school five days a week, and sometimes getting him on the bus is a major accomplishment. Sometimes, not getting a call from the school or the bus driver in a day is a major accomplishment. He goes swimming at the YMCA and out for french fries (that's all we will let him eat there) at McDonald's every week with L, who does respite with him/for us and willingly gets into a bathingsuit almost every week. She also takes him to the park, and the zoo. He regularly goes for car rides with his grandparents and parents that sometimes end in french fries or donuts, sometimes not. His grandparents take him out to dinner, usually for pizza. We go to VT as a family about once a month, and depending on the weather have taken him swimming in a friend's pool, in the river (or just to throw rocks), for walks on local trails and to the raptor center. We are members at both a local zoo and a children's museum, and he is able to go with us as a family to both. For his birthday we took him to a huge indoor water park, and last year I took him to see Disney On Ice. This weekend we are going apple-picking (with our local Autism organization), and tomorrow I am taking him with his class to the movies to see Cloudy With A Chance of Meatballs.

It may sound defensive, and maybe it is. But, (as my MIL would say) my point is, while Sam does not go everywhere, he does go places. And as his parents we make the decision on whether or not to take him someplace based on a few criteria; our own version of a cost/benefit analysis:

1. Whether he has to go (physical or other required doctor's appointment). If it is an activity or appointment that we have no choice in, we take steps to make it as easy as possible for him and us. We will take his ipod, and put games or movies on it, along with icons/pictures he can use to communicate. we bring snacks, specifically something appealing that he doesn't get all the time, like Annie's bunny fruit snacks. We tell him where the bathroom is, and ask him frequently if he needs to go. We try to minimize the time he is in a small enclosed area. Sam does not like to be contained against his will. We don't show up too early. Waiting is not an option with Sam.
2. We examine the safety and security issues. Can we, or the person who is taking him, manage him if he gets unruly? Can we/they pick him up and carry him to the car? Is the car close enough to bail if it all goes to hell and a handbasket? Is the area contained in any way or is it too open so that he could bolt or try to wriggle away? If it does go to hell and a handbasket will we be too far from home or will the whole family have to miss an event?
3. We figure out whether it is something he wants to do or is interested enough to behave appropriately.
4. Is the benefit to Sam enough to make it worth the energy it will take us? Will it be a positive experience for him?

These are the kinds of things (and I'm sure I have forgotten some) that we think about EVERY time we take Sam out somewhere. We WANT to take him places. I hate the thought of him missing out on something. Especially something that I think he would enjoy. Also, every time he misses an event or activity, it is just a reminder of how different he and our family are. That's why I was so upset about him not being in the class picture. Next up: musings on the little person starting to notice that his big brother doesn't talk. that's how he says it. Matter of fact.

" Sam doesn't talk."

Good News and Bad News...

The good news is that apparently Sam's school picture came out great. The bad news is that he will not be in his class picture. Sigh...I guess he started exhibiting some "behavior" and they decided to skip it. I'm not sure how I feel about that. I understand him having a hard time and his teachers having to make executive decisions, but last year they planned for it and he did really well, and it makes me really sad that he's not in the class picture. It plays into how well his new teachers are able to work with him and manage his behavior. He's had a resurgence of challenging behavior at school, and it's hard top watch him go through it again, and to hear about it in his notebook, and at our meetings, and in phone calls (the "exposing himself" incident).

On the other hand, I have the best friends and the greatest family. I am doing this Walk for Autism, and I put out a plea for some donations. I am totally overwhelmed with people's generosity. People, so far have donated almost twice the amount I committed to raising. As I told my friend and fellow member of team tiny, when it doesn't suck I remember what a good life I have, and when it sucks I remember what amazing friends and family I have.

To haircut, or not to haircut

Tomorrow is picture day at Sam's school and he could technically use another haircut or more specifically "shaping," but I'm not sure if I feel like it. Actually, that is M's job, to do the shaving, I just hold the child (back when we had to do that), and in the most recent, breakthrough haircut, I got to trim the sides with a scissors. I hope that he would be as good as he was the last time, but you never know, and aside from the autism thing, I'm just tired and not in the mood. Last year, he did great on picture day, so this year we got the huge package. We may have jinxed the whole thing by doing that...

Sam had a great time with L yesterday during our respite. She forgot her bathing suit, so she took him out to lunch and the park, until the combo of Friendly's and a runny nose caught up with him and then he went home and spent some time in the bathroom. Except, poor L, and poor Sam, he didn't quite make it home. They both survived and Sam seems fine except for a sporadic cough.

Walk Now for Autism

On Sunday, October 18th, I will be participating in the Walk Now for Autism at Suffolk Downs in East Boson. Please visit my personal web page to join our team or support a cause that is very dear to my heart. I look forward to seeing you there!

http://www.walknowforautism.org/greaterboston/ami

The more things change...

Wow, when you haven't written for a while, it gets harder to write. I have posts in my head, but somehow don't find the time to sit down and commit. And I hate it when the blogs I read go dormant for periods of time.

Things have been pretty good here at the Sammy Noodles household. The kids are getting into the swing of the new school year. Actually, Sam and I have not been butting heads much at all. I think part of it is the sleep. M was in VT for a few days to do some work on the farmhouse and I was alone with the kids. When Sam would get up at some ungodly hour, I would do what I normally do: let him go pee and encourage him to go back to sleep, trying to keep him in there till at least 6am. It helped that one day he actually slept till 6:30. Then I would open the door, let him out and grant him access to the basement ( computer and TV) and go back to my bed, with the door to my bedroom open. Then I would snooze till the small person woke up, around 7am. I did it today when M was back, and it worked pretty well. Sam is fairly self sufficient in the morning, our house is safe for him, and the extra snooze time seems to work wonders for me.

Sam has been doing well at school in some ways, and having some challenges as well, which is not unusual. The two steps forward, 4 steps back thing is exhausting for me, though. I just wish he could get past some things, instead of having to revisit the same issues again and again. I know that is the nature of the beast, but this months clinic meeting was difficult. I cringe at hearing all of his behavior detailed into charts: the number of bites, the number of attempted bites, the number of tantrums, and episodes of flopping (resistance is futile). On the other hand, he has made stopping into his first grade classroom to do work, a regular part of his morning routine, which is great. And I got a chance to meet his new first grade teacher, Mrs. C, and she was really lovely. Of course, I was the only parent weeping at the Open House, but still. Sitting among the parents of his typical classmates discussing all of the things they were doing that he is not ready for yet, was hard, but I made it.

Next up, going with Sam's class to see Cloudy With A Chance of Meatballs, and taking him apple picking.

I love school!

Sam has been doing great at school. There has been one incident where he, ahem, exposed himself (peed while on the playground), but we seem to have overcome that by getting him to use the bathroom prior to recess. GENIUS, I know. See, when a child doesn't speak, sometimes you forget to talk to him as much as you would a Chatty Cathy like the little person in our house (which is not always a bad thing), and forget to tell him things like where the bathroom is in a store, or remind him to use the bathroom before going outside. Because, he's a boy, and he's certainly not the only little boy I've seen pee outside, but he forgets to do it privately...like in the woods instead of in the middle of the playground, or off the top of a climbing structure.

Sam did fall out of a tree this week. In our backyard. A tree he climbs frequently, but he was hanging off of a branch that was a little smaller and less strong, and it broke. He was not hurt, and because not sustaining injuries is kind of his superpower, he landed perfectly on his feet. Like a Puma. The branch was huge (bigger than his six foot tall Dad), and the two of the kids spent the rest of the day trying to "plant" it in the ground or attach it to another tree.

Ways in which my children drive me crazy...as opposed to ways in which the internet drives me crazy

1. The constant talking. And I don't mean the autistic one. Geez Louise, I can't even hear myself think through the CONSTANT TALKING.

2. The lack of volume control. And I do mean both of the children. The autistic one, because when he wakes me up at an ungodly hour and I finally let him out of his room and give him access to the computer, actually TURNS UP THE VOLUME, interrupting my pretend nap on the couch.

3. Hot dogs for breakfast. Added to that is spaghetti with meat sauce for breakfast, and any non breakfast item that makes me want to vomit.

4. Whining. Goes along with the incessant talking and lack of volume control. FYI, you don't need to be verbal to whine.

5. Not listening to said parental figures. Applies to autistic and typical child. WHAT DID I JUST SAY!!!!

6. Waking at the crack of dawn. See number 2.

7. Hitting living beings and throwing toys. I DON'T HIT YOU (often). And, GO TO YOUR ROOM! But Mom, I'm sorry! Good! And when I catch you...

8. Doing the opposite of what I say. SERIOUSLY! ARE YOU KIDDING ME? But Mom, I'm sorry! I BET YOU ARE!

9. I am running out of material. See items 1-8 and expand...

10. And the number 10 thing about my children that pushes me around the bend...well, I'm going to have to think about that. They are awful cute, don't ya know? The reason they are still alive. That and my high tolerance for stress. NOT!

Long time no post...

Things have been busy here at Sammy Noodles House. In a good way. We went on vacation to VT, and then I had to work, and then my BFF Mrs. D came to visit. And now I have to work again for the next few days. I have plenty of material, and when I have some time later in the week, I will be sharing Sam's most recent escapades. The kids are both back in school as of today (Sam started last Wednesday and then had Friday and Monday off) and we are looking forward to getting back to our regularly scheduled programs. Sam has been pretty good lately, but we are looking forward to the continued structure of school. We had to stop Sam's swimming lessons (more on that later), but got him a membership at a local YMCA and he went for his first swim with the woman who does respite with him on Sundays. They had a great time, swam for 2 hours and then he was exhausted. Which is the way we like it!

He Wants Spaghetti for Breakfast

I am back. Actually, I have been back since Friday, but even though I have had several blog posts in my head throughout the week, I have had trouble committing pen to paper. Oh, you know what I mean. It is as if the more time that passed, the more overwhelming the task felt. I had too much too say and didn't know where to start to catch up. And somehow, if I didn't tell you all of it, then I would forever be behind.

It was a good week, though not without its challenges. M erased the videos on Sam's ipod and we had no internet except for our Blackberrys. This was our first trip to VT since Sam started really using the internet, and being a whole week without it was hard for him. For us too. The combo of the internet and his ipod are calming for him. Sam is an all water all the time kid when he has access, so anytime you were outside you had to be prepared for him to go in the pond and monitor him once he was in there. It was spectacularly buggy, so sometimes I sat with my head wrapped in a towel. This was only moderately effective, but it did give my family something to poke fun at. Sam did a great job swimming this past weeks. Lots of laps in the pond and at a friend's pool. Seems like the year of private swimming lessons may have paid off. The weather was great, and we were fortunate to have access to a pool with a view. Also, some good, understanding family friends to hang out with while we were there. We went in the river a couple of times, one of which was a total mud fest where we had to drag both kids out screaming. That was fun.

One night we had dinner with some AK friends living in VT. We had a great time, and while we were there the kids gave my MIL a run for her money. The little one, who has been almost completely potty trained for weeks, a month (?) totally regressed and started having accidents the minute we got there. The night we went out, he pooped his pants, and so she took him up to the bathroom to clean him up. She was cleaning out his undies in the (clean) toilet when she heard the front door (we have a chime on the door), signaling Sam's bolt for freedom. She told the little one to stay where he was and not move, and ran down to look for Sam. She looked out the door, didn't see him and started yelling for him and he came pretty quickly. By the time she got back upstairs to the little person, he had flushed the toilet. With his underwear. In the 200 year old pipes...So the plumber came the next day.

It was a great week, but a hard one for me. No school/break every day and limited childcare has been exhausting and frustrating. Today, I am already tired, as it was my day to get up with Sam. I was a little crabby with him this morning. He wanted leftover spaghetti and meat sauce at 6am, and I couldn't cope. Of course, now that I've succumbed and warmed up the pasta, he is happy as a clam. Unfortunately, me seeing the error of my ways didn't come until after we had woken M up.

School doesn't start until Wednesday, and then they have Friday AND Monday off. As if they need a four day weekend after a whole summer off. Actually, Sam has only been off for a week and a half. But still...

Give It Up

If you have kids and are up with them on a day you don't have to get yourself or them ready, like the weekend, at what point do you admit defeat and actually wake up? As opposed to pretending to sleep on the couch or in your bed. I tried to think of an equivalent situation for those that don't have kids, but really, why would you get up if you didn't have to? Maybe if you have to get up for work and you are still pretending to sleep? And if you are fortunate enough to have more than one child and one gets up earlier than the rest, is anyone else obsessed with not waking up subsequent child(ren)? Edited to add: Sam just took his whole family of stuffed animals down the basement stairs in 3 separate trips. I guarantee you they are being put to sleep comfortably, under the desk.

The noises that drive me crazy are the swing, the computer, the TV, and the squeaky basement door. Also, the grunts and squeaks of the autistic child who is totally awake and energetic the second he wakes up running up and down the basement stairs, turning on the too loud for morning TV, swinging on the swing that I can hear from my perch on the living room couch, and surfing the net for the loudest web sites. Did I mention the UP and DOWN the stairs and the CREAKY door? And the requests for more juice? It has occurred to me that I may have sensory issues of my own...

My real point in this post, before I got riled up yet again about sleep (or lack there of in my case), was to discuss putting limits on Sam's access to snacks, TV and computer. Now before you get all holier than though with me about how my child has fairly unlimited access to these EVIL items, let me say in defense that I am tired and it is not easy. I am not as interested in his having to request things (as opposed to just taking what he wants) as I am in his having appropriate things at appropriate times. Cereal for breakfast, hot dogs for dinner, and Chex Mix for snack. Twenty minutes of computer now, 30 minutes of TV after dinner AT THE TABLE. Basically, we need a little Annie Sullivan for our Helen Keller. But as that involves locking cabinets, and activity schedules, screaming and 24 hour monitoring on our part, I am a little hesitant. Did I mention ALL THE WORK? Quite honestly, it seems like something that should at least wait till this week of vacation is over and Sam is back in school, so we can get some help from his teachers.
Now Sammy Noodles has added his chenille blue blanket as a cape/blanket for hism and his family. I saw him float by, Harry Potter style.

The Good News

The good news is that Sam got up after 6 am today. This begs the question, how come he never sleeps in when it's my day to get up? We've been a little housebound since it is CRAZY HOT outside (actually, it's the humidity that makes you appreciate the cool breeze of the A/C) and the kids are both off from school and camp until September 2nd. Our childcare is limited this weekend, so we are taking advantage and doing some indoor projects. The kids have been pretty good about this, though the little one is driving me a little CRAZY with whining and pouting and bouts of rage. Tough life, I guess. He doesn't understand why we cannot have ice cream every day, whenever we feel like it, or have macaroni and cheese or hot dogs for breakfast. I can't say I don't sympathize, though I prefer bacon and pancakes to cased meat. And dessert whenever you feel like it is one of the benefits of being an adult, though his metabolism is way better than mine.

Sam has been pretty content to play on the computer and graze on array of snacks, though he has been really into the stuffed animals. We, like most folks with little kids have enough stuffed animals for twice the kids we have. The irony is that they usually only play with whoever is the current fave at the moment, and Sam rarely plays with any of them except for his PUPPY. Lately, however, the whole lot of them has been traveling from the basement to his bedroom and back again via toy basket. Sometimes they sled down the basement stairs, and this morning I found them napping under the desk. At night he gathers them all into the basket and surrounds himself with them in his (queen sized) bed. It's pretty cute, except when the poor dears are launching in a luge down the steps.

Not Enough Coffee in Guatemala

Sam got up particularly early this morning. Unfortunately for me, it coincided with a bout of insomnia from 2-4am. Also unfortunate, it was my turn to get up with the little monkey. Sometimes, I analyze the reasons he gets up so early, in hopes that tweaking some small thing will make a difference. It rarely does, but it makes me feel better to obsess for a while on a solution. Lately my focus has been the bed, which is on coasters and moves around a little bit, and the mattress, which is not the most comfortable (Hard and squeaks when you move). I know because it used to be our bed. It's a big investment for a theory, and I haven't totally convinced M it is necessary right this second. Edited to add...someone forgot to take Sam's ipod from him last night, so he was watching a movie when he got up at the ungodly hour of 4:30 today. Good to let him watch for a few minutes in bed, bad to forget to make sure to go get it when he falls asleep.

Sam is in good spirits now, but I'm already anxious about how the van will go today. Today is the last day of the summer program and then the kids have a week off before school starts. Being around the house with both kids all day can be challenging, so we are going to the farmhouse in VT next week. Looking forward to the nice long stretch there.

Hugh Hefner

Well, we had another bad van morning. The van came back with Sam right after it left and the driver said he was getting out of his seat and did M think he would settle back down. M said no, not now that you've brought him back, and took him to school himself. It's hard to explain how the same consequences that would work for other kids won't work with Sam. And yet, we know he needs to behave himself to stay on the van. Fortunately, I was home to watch the little person, so it wasn't a big deal to take Sam to school. But, we don't want to do it everyday.

On the other hand, it's not all bad. Sam came home and put on his pajamas and his red chenille robe and spread out the classifieds and started pointing to all the junk he wanted. Like Trix cereal and gummy bears. Not gonna happen, kid. I did give him some organic gummy snacks I found at Whole Foods (somehow made with juice makes it better). Funny kid.

The Van

As I've mentioned before, the van to school can be an issue. For whatever reason, Sam can have a great morning, and then get on the van screaming and crying. Apparently, he is usually fine by the time he rounds the corner, but it is still stressful and anxiety producing to place a screaming/flailing child on a van and seat belt him in.Today, though, he was happy as a clam to get on the bus and giggled his way to and on the van. You never know...

The second problem is the unbuckling. He does this occasionally, but increasingly rarely, in the car with us. He's more apt to unbuckle himself as we approach our house or our street. But on the bus, it is such a regular occurrence that it is a safety issue, because the driver has to stop the van. First we tried a seat belt lock, which he quickly figured out (but which I had a difficult time figuring out). Then they got a monitor to ride with Sam on the bus. Another stressful, embarrassing thing to think about and wait for phone calls about. The monitors seem to only be marginally effective. They are not trained in any specific way, and so I think they just sit next to him and tell him to stay in his seat and not unbuckle. They often ask us what we do when he unbuckles, which makes sense, but doesn't really apply since we can stop the car and turn around and give him THE LOOK. Which comes with THE VOICE. We end up feeling kind of dumb and helpless since there is not a whole lot we can do to fix the situation. It's like someone continually telling you about something you can't fix and that makes you feel like shit.

Goin Commando

Today was pretty uneventful for Sammy Noodles. The highlight was the call from a teacher who said he'd taken all of his clothes off in the bathroom, which isn't totally unusual, but in doing so had dropped his undies in he toilet. So, no, he didn't wet his pants but in case we were wondering why he had no underwear on and his undies were in a bag...No worries, he got home and took off his clothes again, I assumed because he was hot and put on a pair of his little brother's silky shorts. So now he looks like a European boxer.

In other news, the ipod has been replaced and reloaded and he has been instructed NOT to take it into the bathroom. M is out getting the replacement parts for the swing in our basement, which fell out of the ceiling last week when Sam was on it. Twice.

Yesterday I took the little one and Gram to the beach, and L, Sam's respite person, took him to the zoo that has a splash park (Capron Park Zoo), where we are members. Apparently, he did great, until it was time to leave, and then went ballistic in the gift shop (you have to enter and exit through the gift shop). We think he may have wanted popcorn, which we often get him when we are there, but L didn't know that, and even if she did, as she commented, she should have been able to tell him no without him flipping out. Sounds like it was a full blown freak out complete with knocking things off shelves and people staring at them. Plus, she had her bag and his, and she's pretty tiny anyway, so she couldn't pick him up and carry him out. Then a couple came up to her and the woman said to her, "I work in early intervention. Can I help you get him to the car?" L said yes, and the woman took his other hand and they walked to the car. The man told L that if she needed it he would pick Sam up and carry him to the car. So, all's well that ends well, but I suspect a little traumatic for L. Sam fell asleep in the car on the way home. L said she felt badly because he was so good until then. Been there-those episodes are exhausting.

Meanwhile, due to traffic near the beach, we were running later than I planned, and M met L and Sam at home. They were hanging out, Sam on the computer in the basement, when M went to water the garden. The house was locked except the back door where the garden was. M figured he'd hear Sam if he came outside, as this is not an unusual situation and our yard is fenced in. M came back from watering the garden and Sam was nowhere to be found. After checking the house and yard, M started to panic and went out front. He found Sam in front of the house next to us with an elderly neighbor, a former elementary teacher, holding his hand. She lives across the street and two houses down. She said she came home from grocery shopping and found Sam in her house. She has no idea how he got in the house, as it was locked. Nor do we know how he got out of our yard (we assume he climbed the fence). He said "hi," and then didn't respond when she asked his name. She asked where he lived and he pointed towards our next door neighbor's house (they weren't home). She was really really nice about it all, and obviously wasn't scared to find him there. She told M she knew his MIL and that she would check to make sure Sam hadn't gotten into anything dangerous in her house (Matt had told her Sam was likely to poke around). Again, it couldn't have ended better, except by then, M already had that fear of something horrible happening to Sam and the embarrassment of having our poor neighbor come home to find Sam in her house. We also don't want Sam to think this behavior is okay, but we're usually so glad/frazzled by the time we find him that we don't end up disciplining him to the extent we normally would. That said, this time M had a nice chat with him and needless to say he was fairly docile by the time I got home. Also, needless to say, no bike ride for me, AGAIN. And then today it was so hot, I had to come in and recoup after harvesting tomatoes from the garden.

Dream a Little Dream

Let's talk about sleep and kids with autism. Or particularly, my kid. Kids with autism often have sleep issues. Either going to sleep, or staying asleep. That is they often don't sleep a whole hell of a lot. I guess I should count myself lucky. After the first year of hell, during which he slept with us and nursed every few hours and only napped for 20 minutes at a time, Sam has been mostly a good sleeper, as far as going to sleep and staying asleep. His fatal flaw is getting up at the crack of dawn. As early as 4:30am to pee, and then we make him go back to his room till about 6. But generally, one of is up letting him out to go to the bathroom between 4:30 and 5:30, and then refereeing his requests (knocks on the door) to at least 6am. At which point, if it's my turn to get up with him, I go lay on the couch with a blanket. Sometimes he goes back to sleep, and sometimes he plays/reads quietly, but more often than not, one of us will keep putting him back to bed until we finally let him out. Mostly me, because M doesn't have the resolve to keep getting up and telling him to go back to bed. M will just get up with him, and I will die before accepting defeat on letting the child out of his room before 6 o'clock. Also, we lock his door from the outside at night. I hesitate to write this, because I know folks will have all sorts of opinions about locking a child in his room at night, but it works for us. It is a safety issue, and neither M or I could sleep listening for Sam up and wandering the house at night.

To be honest, though I resist getting up on my days (we take turns), Sam is pretty easy in the morning and fairly self sufficient. The problem is when he wakes his brother up early, or Max gets up too early for some unknown reason. Max is much more high maintenance in the morning, and there is no pretending to sleep on the couch. There is toasting of big or small Eggos and requests to come in the basement and play or sit with him on the couch. None of which is bad, it just involves being more awake then parenting on the couch, or OTC as my friend Jenny calls it.

A Day in the Life

Today was supposed to be fun for Sam. He was going on a school field trip (he goes to school year round) to Davis Farmland, a farm/petting zoo/splash park in Sterling, MA. This was a big deal for 2 reasons: 1. Sam needs one-on-one supervision and they had enough supervision for this trip that M and I didn't have to go, and 2. We thought Sam would have a great time, between the splash park, corn maze and snack bar (Sam loves french fries and hot dogs).

I'm not sure exactly where it all went wrong, but it had something to do with the van. The van picked him up sometime after 8:30, and at about 8:45 I got a call from the woman in charge of transportation. The woman from the town said that Sam was uncooperative, that he wouldn't get in his [car]seat and that they were bringing him home so that we could either calm him down or take him to school. After that change of plan, I got him off the bus and put him in the car so that M could drop him off at school. Then, I got a call from another parent, wondering why the van was late for her child. I explained the incident, and went to get dressed. After a little while, M showed up. He said that S was fine the whole way to school, but then on the way home got a call in the car that S was again crying and uncooperative and if it continued he wouldn't be able to go on the field trip. We were unsure whether that meant he could stay at school or need to come home. As we waited to to see if the teacher would call again, I struggled with a mixture of panic and anxiety.

Sure enough, the phone rang, and M went to school to retrieve S. The change in plans didn't feel great, but part of me felt like maybe he just didn't want to go for whatever reason, and better to find out now than when he was a an hour away. Maybe he was upset he didn't bring Puppy (his beloved stuffed animal), or maybe he just didn't want to miss out on fun time with the cousins that were visiting.

Things seemed tolerable for a good part of the day. We helped the kids ride their bikes, and Sam did pretty well. We still need to get better training wheels. We went in the sprinkler, and then M went to the hardware store and the kids and I were relaxing. A little while later I went to help Sam in the potty (still needs some help wiping) and while I was in there he dropped his ipod in the toilet. The water was clean by that point, but I'm pretty sure the ipod is toast. This is frustrating because obviously ipods (this was the touch) are expensive, and also because Sam uses his for communication as well as entertainment. He has lots of pictures loaded on that he uses to tell us what he wants, as well as a couple of programs that simulate speech when you touch an icon, word(s) or picture(s).

Also, at that moment, it felt like the culmination of everything that is hard about our life. I found some white sticky substance (toothpaste) on the bath and hand towel and a couple of the cabinets open. Sam likes to go through cabinets and squeeze/pump things out of their tubes/bottles (toothpaste, sunblock, soap, bug spray, room spray). I went ballistic and felt such rage for the injustice and indignity of it all. For the difference between how my life is and how it was supposed to be. (Apparently I was more upset than I thought about the field trip.) I usually don't dwell on the unfairness or comparisons, partly because it's useless, and partly because most days I can find some joy in my life with Sam.

As I calm down and get myself together, I recall the good things that happened with Sam this week. He lost his first tooth, he got his first trauma free haircut (trust me, that's a whole separate post), and did well at his end of the summer school party. Edited to add...There was a bathroom incident prior to bedtime that involved lots of cleaning of rooms, furniture and a child which left us drained and me too tired to go for a bike ride that I'd been looking forward to all day. Fortunately, we have plans with friends tomorrow; a nice break and free childcare.