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.

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.