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