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.