Structure & Schedules & Expectations.

Ali,
I totally relate. Josh is *very* into schedules, and he benefitted tremendously from a picture schedule when he was Simon's age. Remember, though, that while a picture schedule does require some adjustment now, is not a life sentence. It will help Simon while his verbal skills are developing, and while he is likely to always be fond of routines and predictability, but you will not be putting little pictures up to tell him the schedule for prom. {grin}
Also, I once met a woman who had a very interesting perspective on balance. She disliked thinking about achieving balance, because she thinks that balance is inherently unstable and thus found it to be a somewhat futile endeavor. She instead liked to think about her *life collage*, where she may want to add a little more of this or cover up a little of that, but while she was modifying she didn't feel like the current thing was wrong, but rather that she was just seeking something that she liked better. I quite liked the idea that instead of being off balance, perhaps I just need to play with my collage. She has a book, "Creating Your Life Collage": http://www.amazon.com/exec/obidos/tg/detail/-/0609804103/qid=1117199927/sr=8-1/ref=pd_csp_1/104-4808486-7159122?v=glance&s=books&n=507846
Ali, as always, thank you for sharing yourself with us.

ya know ali, i am so like that too, don't feel bad. we have NO structure here....it's go to bed whenever you want, get up as late as you want, breakfast at 10 , lunch at 3, it's CRAZY.....but it works for now....i figure i have to get on lifes schedule soon as savannah starts kindergarten next year......i feel for ya, i do!
tara

Ali,
Gotta love the Boardmaker program (for the little picture signs) We used it all through preschool with Ethan. Many non-verbal kids use it to communicate (known as PECS). Wasn't our issue so we used it like you are for structure & a schedule. Funny thing is that I got to really enjoy the schedule - (I just scheduled my me time in as well...)
Once you get Simon used to the schedule and anticipating the next steps on the schedule THEN you work in the flexibility and go with the flow-ism 'cuz many kids on the spectrum have real issues with rigidity.
***For those who might be interested (?Cathy), there is a device that you can buy called the "Time Scout" that you plug into your TV or Computer (or any electrical device you have time issues with). You load a usage card with a set amount of time and when you want to watch TV, slide the card thru to activate, when your time is up, the TV shuts off and can't be turned on again without another active card (parents can reload cards each day or as often as they want). We use it in our house during the summer 'cuz I find the boys will watch hours of TV/play on the computer & I hate nagging.

Ali - I love the edited/added part of your message. It's so awesome that Simon just 'gets it'. Jacob will turn 2 in July. We started doing a picture schedule with him for bedtime a couple of months ago... and it's amazing - HE GOT IT. Immediately. What was once a challenging task (bedtime), turned into something that he enjoyed. All because he knew what to expect.
Our SLP has told me that it's impossible to put everything on a schedule. To just focus on those things that are challenging. For us that is bedtime. We're also trying to work on some First-Then boards. Basically, Jacob LOVES to draw... or I should rephrase. He loves to watch us draw. So I have to use that activity as a sort of reward. "First we eat, then we draw". This way you can still have some flexibility, and don't have to plan an extended sequence. And your child still gets to know 'what's next'.
Anyway, thanks for sharing. :)

Having kids is os hard isn't it? It's hard to let go and give up the life we were usedto before them and re-structure. It's hardto find that new balance. I havefound Mack loves schedlues and nknowing what is coming next. The way I relate to it is that for me I always know in my head on any given day what "I" have planned out- what my internal schedule will be but I have to remember to share that schedule with Mack and let her in on my plan - makes it so much easier. She has so little control of what happens in her world that she thrives when she knows what is happening when. It's tough though. Parenting is such a hard job.

Just remembered a CD you might be able to use for Simon's picture schedule. It's called
"Pics for PECS CD." You can find it in the Beyond Play catalog (www.beyondplay.com in the communication section.) It is basically 1000 Boardmaker pictures commonly used in early childhood (food, classroom items, playground equipment, etc.) Would be awesome for choice time activities on the circle part of your schedule. Just a thought! :^)

"get off your ass" will now play in my head each time I am in the middle of a LO and it really is dinner time:) Thanks Ali.
kellicrowe

looks like the "get off your ass" club is getting bigger...(let's just hope our actual asses don't get bigger)...thanks for the kick...you're great...

Wow! I have never thought about the evening family schedule as really being "my" schedule, but you are right! What interesting insight and definitely something to think about....
I hope that the picture schedule works for you, Chris, and Simon. Hopefully, it will become a habit and part of your normal schedule.

you are so right. Something I struggle with daily. Why is it that everyone can't just follow MY schedule? :) Because I'm their mom...here for THEM. Thanks for the reminder...

3 years ago, I was a teacher in a room for young children with autism. I'd taught early childhood special ed for 5 years and thought I knew what a schedule was and how to follow one. Nope, I wasn't anywhere near structured and routine. How I hated it and how it had me in tears. But by the 3rd year, I'm wondering how I could have ever done anything different! You'll end up loving it. It is more work, and does require more planning, but it's what Simon needs to learn to be flexible. So you'll do it.

Ali - I don't comment all the time (or really much at all). Just wanted to let you know that you are in my thoughts as you struggle through this. No autism, but a second child who needs his structure and can't deviate from it without severe consequences to those who changed it (me). Course I was suckered in by that first "go with the flow" child! lol! Keep at it...sounds like you are doing a great job!

You are doing an awesome job - you're a great mom (((hugs))). We are a family that thrives on schedules, so it's hard for me to go with the flow when it's needed. I like the picture schedule and I hope it all falls into place for you guys soon.

From me as a mom...don't be so hard on yourself. From me as a teacher...THANK YOU for setting Simon's schedule (a little wiggle room is ok too!).
I've gotten on my soapbox lately about multi-tasking, over scheduling, etc., however, my rants are about the extreme. Kids get a sense of security in knowing and thrive when expectations are clear. They will test boundaries to the point of consequence...just to make sure they can trust. In Simon's case, a schedule is what helps make sense of all the noise...it's like a life raft, or a favorite blankie...and maybe not just for Simon.
I've said it before, you and dear hubby are doing right by your little guy...I wish other parents would step up to the plate as you have.

Ahh structure... schedule.. I was so good about that when the kids were babies, and now I am not as good. We do have a great night-time plan - dh is the instigator and leader of this - and it works! I feel selfish a lot, too - who doesn't want some me, time?

Me too. Going to get of my ass and make summer fun for my kids. No more winging it here either. The kids grow up too quick. Thanks for putting it out there!

hi ali ~ just was thinking of you and simon as i was reading a CK and looking at your mud paint art LO. you give simon everything he needs ~ don't be so hard on yourself. love reading your blog.

Oh Ali, I just made my way here yesterday after hearing about your blog some time ago. Speaking of schedule my online time is somewhat limited. So, I start reading about Simon and begin to realize something's not quite right so I go back to the beginning. Dread, shock and sadness reading about Simon's dignosis. It hurts to know that Simon will be challenged by many things that should come easily to him, that come so easily to other children. It hurts to know that you and Chris will have to see him struggle. Because you love him so much you will do the tough schedule and the tough diet to help him.
At the same time, seeing all of the charming photographs of Simon--pure delight. Reading about his accomplishments--joy. Does Simon's challenge change the affection I've some to feel for him through you and the scrapbook pages you have so generaously shared with us? Not one bit. He's still the same sweet, adorable little dude he has always been.
As for schedule, you are not alone. I think just about every parent has experienced that "get off your ass" moment at one point or another. All children benefit from structure, Simon needs it. Think about how many changes you have been through in the past several months and how much you have had to absorb and learn. Don't be too hard on yourself for not getting a more structured schedule in line before now. One thing at a time.

Hi Ali!!
I totally hear you 100%!! Actually I often feel that way about Sean. With his Autism, I feel like he craves a schedule more so than anyone else I know. And that is the tough part---especially on the weekens! I (try) to get up around the same time and such, but often it changes from week to week, and Sean gets thrown off. So, I am not inspired to make more structure for Sean.
Best!
Pam

That's the true secret of parenting. Giving up what's best for ME, or at least what I like best, and doing what's best for THEM. Which is why parenting is character building. Kids don't get a lot out of it. But the parents always do. You're doing a great job too. -E