He slept!

My little guy slept until 6:40AM today.....

It has been well over a month since the last time he slept past 5am... and his usual is between 3am and 4am.....

Wow, it's so nice waking up in the morning and realizing, did he get up last night?

What was different, what helped him?

That will remain one of life's little mysteries

We have no idea and we stopped trying a long time ago to try and re-play for a repeat!

Doesn't happen....... it's just one night of sleep, that we take as a good moment!

Woo hoo!

And today we have rain, no behaviorists, and we will see what the rest of the day has in store for us.

But at least he slept!

I'm optimistic!

It's Monday once again... boy these weeks fly by fast!

With today came the first time in 3 or 4 weeks that Ty and I HAD to leave our bubble...

We needed to pick up Sarah from school (her ride was sick today...)

I was fortunate to have A the behaviorist with us for pick up- so Ty and her stayed in the car and played Pokemon cards while I went to get Sarah.

It was a great distraction, and was a huge huge help!

He did very well transitioning to the car, for the car trip -all of 1/4 mile...

believe me sometimes that can be the longest 1/4 mile ever.... literally I've had to stop 3 x on that route due to behavior..

so I don't take this positive experience for granted!

So pick up, trip back home, transitioning to a new activity were all successful! That's a big deal in my book!

I was very proud of him-

and I just hope between that little outing, no behaviorists T, W, or Th due to schedule issues- and Sarah on early out schedule all week....

That we continue this path of success, path of coping, path of continued calm nervous system........ I so want to be optimistic, I want to be so confident that these events are now much easier for him to tolerate (and yes it is all about him tolerating these events.... that's about as good as these things can be)

So despite our history on these types of events, I'm going to be optimistic and believe that these "typical setting events" will not be events that turn his ability to cope and deal with the world....into events that once again begin us down a path of dysregulation, inability to cope, intolerant, inflexible and an anxious ball of nerves that spins out of control! I"m hopeful! I"m optimistic! I know we can get through this week- without too much "incident".......

we can do this!!! We will get through these changes in routine this week!

He will be successful! I just know it!

Just what he needed.......

A very fun Saturday for me and the girls.

Lunch with my mom, who we rarely see and don't even ask me the last time I had lunch with her....

maybe when I was in college- some 20 years ago or so?? A long time ago :)

Then off to little cousins 4th birthday party- which my girls think is great because they are the "big kids"....

then back to the birthday boy's house for a little playtime....

Megan laughing and giggling that all these "little kids" want her attention so bad and she's loving every minute of it.

Sarah too is one of the big kids.. which almost never happens!

She just loves playing with her sweetest baby cousin, and it seems pretty mutual! :)

We stayed longer then I planned, and it was honestly so nice to just 'go with it' because that's just not the way our life rolls... it has to be rigid and it has to be as predictable as possible... and I did check in to make sure Ty wasn't sitting and waiting for me as he many times does...... that's hard to watch.

I may only be gone for 2 hours and he is there, sitting on the front porch just waiting for me.. which means it's cause a lot of anxiety for him

But things were fine at home, and I knew based on having a glass of orange juice thrown at me this morning,

he needed a very very very calm house today-

pretty much still recovering from the changes in routine that started on Wednesday.. and wasn't going very well

so these are the times that we know, minimize the number of people in the house, minimize external stimuli in his environment, lots of very good purposeful calming activities....

this is our recipe to help him

So the girls and I were gone almost all day... which I cannot honestly tell you the last time I was out of the house for that long... probably another cousins birthday party back in the spring?

It's been awhile.... and the girls were having a ball playing with all these "little kids", being playful, silly, and just having fun!

It was nice to see them having such a great time, and I had such a fun day with them, starting with lunch!

And when we came home, we were greeted with smiles, and the transition went pretty smooth!

Yep, us being out of the house all day, he getting one on one time with daddy....

Just what he needed..... and it has led us into a pretty good Sunday.

Which hopefully starts us on the right foot for the start of this week-

which has a change in school schedule for Sarah....

But hopefully we've filled his Calm tank up to allow some depletion without too much incident!

I hope! :)

They had fun.......

wow, wow,,,,,, wow!!

My kids never cease to amaze me..... and it wasn't just one, it was 2 that are the least likely to participate TOGETHER!

Ty just simply asked Megan if she wanted to play basketball... (it's an indoor hoop that hangs on the back of a door)

Now, Ty loves sports- all sports. Megan, well not so much.

In fact, if involves moving, she's even less likely to do it- she is hard to get active

And to then play with her brother- well this is just like winning the lottery!

So she agreed..... I think his face lite up like a xmas tree...... he loves to engage with her- she doesn't

And for reasons that are years in the making, Ty has always struggled to PLAY and has such a high need to control those that he plays with

and let's just say, it almost always never ends well

But last night, those two were having so much fun together. Megan was smiling and giggling- and actually playing

Ty was giggling and having so much fun- they were having so much fun!

I honestly couldn't believe my eyes and ears . And especially, for them to play something physical together- well, like I said, Megan NEVER wants to!

They are ok at times to do something on the computer side by side... that's pretty much how their interactions go, and occasionally they'll agree on a show to watch

/

This awesome basketball playing fun went on for about 15 minutes..... Sarah was cheering them on- there was laughter

there was silliness

and for me and Brian- there was an amazing moment for us as parents.

I have never been prouder of my three kids....... and especially of Megan and Ty........ some how, some way they figured things out!

And they had fun!

The slide, but it is just one moment

Well, I would hate to say that I could have predicted events from the past few days.... it would seem like I would always be setting a negative tone...

But ultimately I think too many changes in schedules and routines on Wednesday caught up to Ty's inability to control HIS WORLD!

And for the first time in many weeks..... I love being able to say MANY

he needed minor restraint right at bedtime- he was obviously tired, but started in with aggressive behavior and wasn't staying in control of himself....

I hate seeing him suffer this way...

I know that Wednesday was a challenge to his system, a challenge to his ability to regulate, a challenge to his world....

And yet there isn't anything we can do to prevent things like that from occurring.... IT'S CALLED LIFE

Could it have been worse, sure, and it has, a lot worse, but it's hard to realize the regression that happens, from what seems like the tiniest of things to the rest of us- but to Ty

it literally rocks his world, and not in a good way :(

So what will the next few weeks bring.... we have lots of changes in routine, school times changing for conference week, then it's Thanksgiving break, then Megan's birthday, and this is all before we hit December!

Well, I'm tired of thinking about it... or really, I don't want to think about it... I know we'll have moments,

both good and challenging

so for right now, I"m going to focus on getting things in a better place this weekend- lots of good calming activities, minimal routine changes (other then it's the weekend- )

and we'll just simply take one moment at a time- and do our best to stay calm in the meantime.......

too many changes......

How do your kids handle schedule changes, changes in routine, changes weather, changes in time, changes in other peoples schedules, changes in siblings schedules, changes in pretty much anything.

And pretty much, the one thing that is constant, CHANGE!!!!!

We have started to experience our little leaks in our bubble world... which of course is bound to happen- I mean really, how on earth can we absolutely keep things "one way" .....

well, as much as we try, we can't...... but unlike most other human beings, it does cause great distress in my son!

And distress in him, is equal to dysregulation, behaviors, inability to cope, struggles- outbursts, meltdowns, verbal aggression.... a completely disorganized little boy who is suffering.

And I hate that I can't control the universe to allow him to be the little boy he can be-

But as good of a run as we've had- which has been absolutely amazing...

When I say amazing- I mean..... we have seen our little boy be so happy and engaging.... calm,regulated, excited, a pure joy!

Now, don't get me wrong... behaviors occur, outbursts are still an everyday occurrence, verbal aggression still happens....

But the big difference is- we are able to parent him!

Parenting to his needs. We have had so many periods of time where things were so absolutely difficult, behaviors so out of control, nothing any of us did was helpful or successful: it was all about 'MANAGING' his behaviors to keep him safe and everyone else safe... he's like a spinning top- spiraling out of control... IT IS THE WORST TIMES IN OUR WORLD... IT'S SO DIFFICULT TO WATCH AND FEEL SO HELPLESS!

These are periods of time we cannot parent him..... it's so out of control- he's so out of control.......

But yep, the one thing that is tried and true that HELPS HIM more than any medication, more than any behavior modification, all the OT in the world....more than ANYTHING........

Closing down his world and minimizing all the external environmental stimuli.....

This is what we have known for years and years and years... and we've done what "all the experts say to do, try, etc.." and what happens.................. a chaotic disorganzied, inability to cope and deal with anything little boy! That's what happens.

So, here we are in the beginning of Fall. Weather has changed. Time has changed with the end of day light savings

Schedules are changing, meetings are occurring disrupting the usual routine,

Holidays are coming, birthdays are coming, more holiday festivities, xmas decorations, xmas lights, Santa, gifts, more changes in weather, more changes in other peoples schedule.....

How many more setting events can we throw his way!!!!

I saw a sneak peak of a change yesterday. Day was going well- but the behaviorist can a change in her schedule and was late by 2hours

Brian had a late night meeting and wasn't home until after bedtime

It was a Wednesday, which means Sarah gets home from school earlier then usual for early out day and Megan starts school later for late start day (yeah, sometimes tough to keep up with all the school changes :) )

And for the first day in quite a while, he got upset over me telling Sarah it was time to go inside..... Sarah and Ty had been playing so sweetly in the leaves- throwing them, jumping in them, racking them up... I love seeing that interaction.....

But this is something that he struggles with - transitions, whether it's Sarah deciding she wants to stop playing, or me saying it's time to stop the activity and move on... to blah blah.. whatever it is.... this is still a very challenging task for him- and usually ends in some verbal words that require him to "take a minute"..... but this time, he got angry at me...

and decided to pick up a stick and swing it at me... do I think he really wanted to hit me?

No..... it's his threat that he tries to use to control the situation... because ultimately it's all about control and him trying to control his world

But unfortunately compared to how things had been going- he didn't back down, he continued, and further aggressed.

Okay, he just stepped into new territory- territory we haven't been in for several weeks now... territory that starts to remind me of what our life is really like- and essentially we cannot control the universe.... to help him!

Luckily it ended okay, and ultimately he spent time in the hammock, and ultimately him wanting my attention became a bigger incentive than continuing on with the behavior....

But it is a reminder of how quickly these setting events, other peoples schedule changes, a simple late night meeting that daddy has....... really really affects him- and causes him to struggle....

Now, he recovered from it more quickly- thank goodness- that's one thing that is definitely a positive even when there is a behavior... his ability to recover is improved right now... but

we have another schedule change for today with the behaviorist, next week is a complete change in schedule for Sarah, then it's Thanksgiving break, then Megan's birthday, then December, then Christmas thoughts, ideas, activities (within our home of course, because I think you can tell going out doesn't happen :0.......)

More big changes in schedules, Brian is home for 2 weeks, behaviorists have schedule changes, girls are off for holiday, Lights, gifts, excitement, anticipation, and just after the first of the year... Brian is schedule for his surgery!

So, how many changes can happen and be thrown our way..... we will continue to do the best we can.... we will continue to help Ty through all these "changes"

and I just pray that we as a team are able to help him continue this streak of happiness, of smiles, of a playful little guy.....

Trust me, even on the best of days there are "things" that cause challenges.....heck, we aren't able to leave the house as a family- we aren't able to leave the house with him, one of us always always has to be home with him..... it's challenging to us as parents...

It's a very difficult balancing act... as if parenting isn't already a challenging balancing act... but imagine trying to do it and not ever being able to leave your house.... or knowing if we do........ what will most likely happen!

Yeah, it sucks...... and yet when it's the only thing we know we can do to truly help our son, it's easy at the same time..... but seriously, enough with the changes occurring... please universe stay in one place for my son!!!!! :)

Uninterrupted sleep please!

Things back to the old routine.

Girls back in school, Brian back at work, me and Ty home, behaviorists coming over as usual. Back to a regular predictable schedule.

Back to a quiet house for a few hours. Back to a focused day of meaning, purposeful, helpful activities with my little guy.

And even though it was a long weekend, full of changes in routine, full of unpredictability, a little more chaos moving about the house

it was indeed a pretty nice long weekend!

Ty and Sarah were really into playing together- and did a great job. Ty loves teaching her all about football, and she's a willing participant.

But even with things rolling along, I cannot for the life of me figure out why he is waking up so much at night.

He's regularly waking up at 2am all last week- he gets up, fixes a bowl of oatmeal, watches a little video, and then heads back to bed. Now, this is better then it used to be.

At least he isn't waking me up, or the rest of the house. We have definitely had the periods of time of this night waking and him thinking it's party time... and causing chaos and purposely waking everyone up..... that was not a fun time :(

This, well, he wakes up, (Brian helps him because it's dark and Ty won't walk into a room that is dark- so Brian turns lights on for him and gets him set up. And then goes back to bed

So the last several weeks it's been 2am, even some days at 1:00am or 1:30am- ugh

This morning Ty gets out of bed at 8am and tells me "well I got up at 4:00am- that's better then 1, 2 or 3am, right?"

well, um sure, I guess 4 is better then 1, 2 or 3am.....

But when I think back to when he was much younger- before we even had any diagnoses, when he was just a little guy, 2 and 3....... what did he always do?

He ALWAYS woke up around 2 or 3am...... crying, screaming..... and then would continue to cry for the next several hours,

This was every night.... it was so tough, and we got so little sleep- Brian went and slept in his "dedicated" room, and Ty slept in our bed with me

Brian had to go to work.... it was so hard sleeping so little, night after night after night- for years.... talk about feeling like you're going crazy- not sleeping - does that!

Ty would just cry and be inconsolable for 3-4 hours every night- the only thing that would ultimately help was me bouncing him vigorously on the big yoga ball.....but even that wasn't always effective, but the only thing that would some what soothe him.

Not exactly what I wanted to be doing at 3am- bouncing on a big yoga ball for an hour while holding my toddler.... and still being up for 3 or 4 hours every night-

oh and then having to get up to get Megan off to school.

Those were really tough times and really tough nights.

But that is what is so puzzling to me.... because he's done this night waking thing more years in a row then actually sleeping well. We've have good periods of time (all were before he started school)

But we have not been able to ever consistently count on sleep, consistently count on him not waking up and wandering around the house at night

and even if he's not purposely waking us up...... him wandering around the house, fixing himself food, well it's not a time I can easily just fall back asleep, until I hear him crawl back into bed with Brian.... and so I"ve lost that sleep too.

It's funny, Brian can sleep right through it all.... but I can't... I think it's back to that whole mommy / daddy thing when you have a baby... and how mommy's can't just ignore different cues the baby gives.. heck I can't ignore cue's other babies give... it's such a maternal instinct to help a baby.... soothe a baby, comfort a baby... where as for dad's, well it's just different and I don't think anyone will argue with that!

So this whole night waking, not sleeping through the night, waking up and eating something- then about an hour later returning to bed is puzzling me....

and even with reinforcements, even the rare one time he doesn't wake up and sleeps all night, well...... never consistent.

the only thing that is consistent these days is his night waking.... and whether it's 2, 3, or 4am...... it just happens.

And it's happened more times then not throughout his entire life.....

But with the days we've been having, with him waking up and not waking everyone else up, what are we to do?

It just is, what it is..... and whatever the cause is, it is stronger then any reward, incentive, threat, plea, that we may do.....

It is what it is.....and pretty much there isn't a damn thing we can do about it!

It's just like the picture I have posted above on this blog.... Autism sleeps, just not where or when we want..... that is so true...

He naps more often then not.... regardless of the situation.... sleep just over takes his body at some point.. and that's it.. he's asleep..Very much like a newborn- where boom- they're out like a light

We just have to nurture it, accept it, and allow it to occur..... he's a kid, a growing, developing, little boy that needs sleep....... so when it happens, we just let it happen.

But seriously, it would be nice to have at least a few nights in a row of uninterrupted sleep..... just a few.... we don't have a high bar of what we expect.... but just a few, and in a row..... please!!!