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!