Momentarily forget about the days chaos

My girls and I went over to my sister's to celebrate the 3rd night of Hanukkah with her and her new Husband.... who we all just love!

It was so nice seeing the girls eventually warm up and become engaging and silly

They played the dreidel game, and I got to visit with my sister, Paul and my Aunt Sissie who was visiting from out of town. It was nice... it's been a long time since I was able to do that... and it gave Ty and Brian a quiet house which I know he desperately needed

especially after a good morning, then he took a nap, woke up with crazy thoughts, I had to go walk the neighborhood a few times

and then things ultimately settled...... so it was nice to "get out" ....

and it was really nice seeing the girls have a fun time...... this is the constant balance we try to achieve... we can't do things as a "family" it's just too overwhelming for Ty

but giving the girls experiences outside our home, as it can be difficult, especially during more difficult times

but being able to go celebrate, visit, relax, and literally momentarily forget about the days chaos

and best of all..... see them smile!

How to get a resistant kid to shower????

Want to know the secret of how to get a child, who absolutely refuses to bathe, and hasn't done so in now 3 weeks, and yes is stinky, greasy hair, and well..... NEEDS TO BATHE!!!

What's the secret??

oh hell, I thought you were going to give ME the answer!

Oh my goodness, summer is easy, he swims almost everyday!

I love when he decides to take a bath- there are so many wonderful things - he plays, it's like a big giant hug of warmth... and we don't even mind that he usually takes a dog in with him!

So once summer ended, getting him to properly take care of himself, bathe, change clothes, has been challenging!

Don't know why.... usually changing clothes is the opposite problem.. he will change his clothes 10 times a day!

Meaning tons and tons of laundry!

But that was fine!

Right now he is in a "now shower/bath" phase for some reason.. don't know why.. and trust me we have tried motivating him, even down to paying him!!! (as it's a chore, so like other chores he does he receives payment.... $1.50 for bathing!)

But nothing, I mean nothing is motivating him right now!

Bath times has never really been a positive thing, or even an easy thing, okay it's been down right torture most of the years.... him screaming as if we are killing him and we were just washing him... geez, a little sensory stuff happening (however when he was a toddler and little, we didn't know any of this!!!)

But seriously, bathing was torture to him- and then he would go in and out of phases of taking baths, enjoying them, playing in the bath- especially as he learned to like swimming better!

IT wasn't much of a chore for a few years anyway!

And now this year..... when he needs it the most- he's 10, and a boy, and sweats, and plays outside all the time.... yeah you can imagine!!

So, we've been working hard, trying to motivate him- it's a very delicate thing... because if we push "too much"... he will explode at us... and well, that's not good.. we are not trying to induce stress on him, more on the importance of taking care of one's own body..... it's a very important skill he lacks and needs to learn!

So, a few times this fall, paying him was enough motivation for him to shower... with a dog in there with him of course which is fine... he washes the dog too!

But lately he is more resistant than usual... don't know why... we can't push the subject... this week he has "promised" he will, and then backs out...

It's interesting when you think about it... there is clearly something holding him back, something that he considers too much of a challenge

but who knows what!

But this morning, he did it!

He took a shower... even without a dog!!!

Hallelujah!

Why today?????

Still no idea, however he saw that the movie Dolphin Tale 2 was now out for rental

he wanted to watch it... he tried over and over to convince me to "just get it" for him

and HE eventually came up with the idea, he would take a shower if I rented it for him!

Now this is actually how his thinking goes... he would watch it first

AND THEN

take a shower!!!

Oh, I don't think so little man... mom is no fool (at least usually - lol!)

So it was enough motivation for him today to take a shower so that he could then watch the movie!

Thank goodness....... Now let's just hope he doesn't go another long stretch before the next one!

......As if we have any control over that!!!!

Believe me, we try (in the most delicate of ways.... trust me- we are pretty good)... but ultimatley- it's up to him!

And sometimes there isn't a damn thing we can do about it..... no matter how hard we try..... it's not little anymore!!!

Almost....

We almost got through a MONDAY without incident!

I tell ya, transitions for my kiddo suck

and cause him to tail spin... first one was when Sarah got home, but luckily settled fairly quickly

second one was bedtime, and so what does my boy do>???

Decides it's craft time at 10:00pm

He gathered tape, boxes, Christmas lights

and he made a "light show"

When the rest of us know how to adjust to the change for bedtime

he does the opposite

gotta love his ability to always keep us guessing of what is next to come!

Maybe, just maybe today will be 100% without incident, including verbal insults...

I believe we are due for a Christmas miracle ;)

Plus we are still playing with meds to dial them in better... it's quite a process.... but necessary!

Here's to a day I hope I can report that has "nothing" to note!!! I do believe in miracles you know

delayed response

My keyboard and computer are totally not cooperating this morning

freezing up constantly and completely delayed in its response

kind of the way I started my day off this morning

Ty too... he actually slept in till 7:45 this morning

sleeping in and Ty are not usually said in the same sentence!

But as we listen to the rain fall, and it's going to be another wet and rainy day

just hoping I can get him engaged in an activity to help minimize his boredom and keep behaviors positive, rather than negative! I guess it's time to "wake up"..... may need another cup of coffee to help jump start!

my joyful reminders

These are my joyful reminders...... it hasn't ALWAYS been hard (we have had good moments).... trying not to loose sight of that... and keep these reminders more present

Want to know what is hard?

Want to know what is hard?

Always waking up in the morning to "unknown"

Unknown of what Ty's behavior and mood will be

Is he in a good mood?

Is he in a bad mood?

Is he manic?

Is he depressed mood?

Is he exhibiting lots of anxiety?

Is he happy, is he calm, is he tired, is he tolerating "his world" around him?

Every day, we never know, everyday it's something different, and as much as that sucks for us, his family who loves him and is always surrounding him

Imagine what that would be like if it was you?

That must make things really really challenging!

It must make things scary when you, your own body and mind, can't grasp and hold on to the world around you.... and it's just spinning and spinning

This reality of our world, of Ty's world and us that are always watching from the outside in... him on the inside watching the outside around him

must be hard!

No other words to explain it, because in reality, I cannot even dream what it is like for him!

And what's even harder, is we just don't know how to help him when it's hard!

We're trying, we'll always try, we'll never give up

and believe me, it's hard

but we'll keep trying!

Always looking for the next good moment..... I have to!

Ever just want to avoid something, because sometimes it means having to face it, deal with it, take it on, and sometimes you just want to pretend it's not there and then it will go away??

Yeah, this!

But truth be told, it doesn't!

It's always there, it's always waiting, and well, that sucks!

Things have been a bit more difficult than usual around here!

Not exactly sure why, except just can't get our life into any rhythm!

Really ever since school year started, we've just been barely treading our heads above water!

We have a few good days, okay, a few even great days

but it's never sustained!

We've had some incredible moment, incredible progress, incredible experiences

but within a blink of an eye it seems

it's gone

For some reason, right now, we have some incredible good things happen, Ty makes incredible strides

but moments later, things can just slide so far down hill, it just makes me cry!

Like yesterday, morning actually was going fairly well!

After all, it was a Monday!

And pretty much Monday's just suck!

But the day was going pretty smooth for the most part, but as quick as that

he's upset, frustrated and does something he's NEVER done before-

he punched out a small window glass panel in our front door!

WHAT THE HELL!!!!

It did surprise him, he literally said, "Oh, I didn't know it was that fragile!"

But this is my point, I truly believe deep down he is such a good boy, never meaning to cause harm, but he doesn't understand, he doesn't get that even when you are just "not really trying to hurt someone" you are just trying to "get your frustration out" whatever

that things like this happen!

Oops, I didn't mean to throw the stick and hit her!

But when you are swinging a stick at someone, especially when angry, this happens... whether you mean to hit her or not, that's why you don't swing sticks at people, that's why you don't tap on the glass window and then tap harder trying to get my attention, and then keep tapping to the point that know you are punching, and then guess what... it breaks!

Thank goodness he wasn't cut.. my goodness, that could have been really bad!

So, I feel like a lot of my time and days right now are filled with "picking up the pieces" of his very poorly thought out reactions to most everything... and it's more than exhausting!

And it's moments like these, that make me really worried for him, and for us!

His obsessions with videos have been controlling him, (obsessions of any kind are just not good)

his lack of ability to engage, lack of wanting to engage, it's scary!

It's his obsessions that drive him much of the time, and there is absolutely nothing we can do about it, except do the best we can to manage

and if it's not one obsession, there is one right behind it replacing it

So, I find, when things are tough, especially this tough.... I really don't want to face my true feelings!

It's just too hard!

I had to call Brian home from work early yesterday.... I hate when I have to do that, but I absolutely felt I had no choice, I was out of options, he was out of control, and being way more dangerous than usual and what the hell am I to do! Both girls were locked in their rooms so they would stay safe, but nothing was calming him down and he's just bigger and stronger now that he's older!

Damn all the doctor's and professionals that absolutely dismissed every worry, concern experience we had when he was only 2 and 3.....there was reason to be concerned- we were not just crazy parents!

3 year old don't tip tables and chairs over out of anger..... he was suffering in pain with his bowels and tummy

Damn all the doctor's who just sent us on our way when he wouldn't eat food, why?? because he couldn't swallow without vomiting it back up or choking

Damn all the doctor's and professionals who didn't listen to us and said my infant was having a temper tantrum when all he would do was scream and cry for 4 hours every night and nothing soothed him

(oh because his intestines were full of ulcers and sores - )

Damn all the doctor's and professionals who didn't understand anything to do with my son and so let their ego's get in the way of helping him and dismissed him as a suffering little boy who was so so sick

Damn all the doctor's and professionals that just didn't do anything...

And now 10 years later, people wonder why we're here!

I don't.... I knew not getting him the proper help, proper medical care, the proper interventions early on when have devastating effects..... his pain experiences were so real, I knew it... and although we did our best to advocate for him, nothing happens very fast, especially when you are fighting the medical system..... once we got done fighting the medical establishment to get him proper care, then we were on to the schools... and guess what- they were even harder and damaging

and once again we advocated, we fought, we did everything in our power to get him what he needs no matter what that looked like, no matter what lengths we had to go to...

Hell, we fought the medical insurance system, making sure we got to see the right doctor's, the school was not about to stand in our way!

They tried... oh boy they tried... and I do believe they absolutely have contributing greatly to the outcome we are in.. because when you believe people have your childs best interest at heart, how can they not... we had information, we had diagnoses, we had "proof" we were dealing with a very difficult and complicated child... so once again, ego's or whatever...... stops us, threatens us, derails us, drains us from what we need to do to help him!

We had worked with the district since preschool- age 4

never getting anywhere, but deeper into a hole!

And then we are the one's being placed in the spotlight because we have to stop all the games people were playing rather than actually helping our son, but we needed to put our energy back to where it matters most- our son, our family...... and screw everything else.

And truth be told, we do know our son best, we have been by his side since the day he was born, since he was 5 days old and we were telling doctor's how odd his stools were, how much he was crying, how difficult it was for him to eat, how hard it was for him to sleep,

we were there... and we'll always be there...

But I just wish Ty could understand how much we are trying to help him, how much we love him unconditionally, and that we know he's struggling

and we're still trying... and we'll never give up...

even on the most difficult days

But it doesn't mean we don't have our own fears, our own struggles, especially when we do feel very very limited in our resources

very limited in our supports

someone the other day asked if my husband and I ever get out for a date?

I said, it's been years!

and I saw the sadness in their eyes, the inability to comprehend how that can happen!

Don't we have family, don't we have people who can watch our kids, don't we have support

so that we can simply get away even if momentarily!

And we don't... that is the straight up answer...... because when we do "get out" and have to "get people" to help, it's not for enjoyment activities, it's so that we can take him to the hospital for a bowel disimpaction, it's watching him while girls are at school, so that we can get to an appointment, take the girls to an appointment, pick up the girls, take them to an activity, whatever... so so so many other "life" things.... that when you can't have one other person in this entire world watch all 3 kids at once, the juggling act is just too fatiguing, exhausting, and well, when we have tried it... let me tell you how disastrous it went and picking up the pieces after the failed attempt...

makes it so that it's just not worth attempting right now.... it' s just too hard!

does it suck? Hell yeah it sucks... I miss my husband, I miss our happy times together.... don't get me wrong though.... we are really awesome at taking a moment, when we see it... simply enjoying a glass of wine or margarita, we take moments.... that's all we can right now!

And really, people will never ever understand, we don't need people to understand... we learned that a long time ago.... but again, see this is why I've avoided here... this... this feelings... this frustration, ... it's not like it goes away... but I want to focus on anything but the negative..... as hard as it may be!

But that's also why we do our Charity Children's hospital toy drive...

it gives me a better focus, and a focus for our family and especially for the kids... because we NEED to do good things for others..... as hard as our days may be... it's critical!

So, it does feel good to get out the emotions, put them into words on paper, release my mind from their grips....

and once again take on the day, whatever it may bring, to always look for the one or two good moments of the day, not dwell on yesterday's bad moments, not dwell on difficult and challenging moments an hour ago... look to see what positive moment will be in the future moments... try to create a positive moment, a fun moment of engagment... our life is in moments..... it has to be..... otherwise we would miss a whole hell of a lot of good things that keep us motivated and gives us strength!

No matter how hard it can be.... okay, I"m ready to take on today's moments... whatever they may be!!!!

please please please be some good one's ;)

Yes, I've been avoiding you!

I've been avoiding you! I've been completely trying to stay away from this

this place where I can put my thoughts in perspective

put my happy and sad feelings down

a place to let it out whether it be good or bad

But definitely been avoiding you!

Why?

Because sometimes it's just too hard

too hard to put into words what I'm feeling

whether it be good or bad

The feelings of some moments hopelessness

and the next moment of joy and some light at the end of this very very dark tunnel

Can you see why I"ve been avoiding you now?

This roller coaster of emotions is so exhausting, so draining, and sometimes (okay a lot of the times)

it's just simply easier to just stuff it all way down deep, and well, just be in the moment at that moment, nothing more, nothing less!

Avoiding feelings, absolutely

The minute I have wonderful happy joyous feelings, before I can even process them, we're back to a difficult moment, full of rage, anger and hurt!

This is why I've been avoiding you!

It's so hard to be so proud one moment and then in a blink of an eye, something else happened (that of course no one has a clue about except my little boy) and now his world just collapsed and he is taking everyone down with him

We've experienced some really really amazing proud moments, moments full of surprise, full of new, full of laughter and smiles

And we've also experienced, some very very difficult moments, full of rage and anger and hurt!

And I try not to, but it is really hard many times to move past that difficult moment straight into the happy moments!

How does he do it? How does he jump from one extreme to another, literally in a blink of an eye, without processing, without much thought, without recognizing what that did to the person involved, how does one move past the bad straight into the good and not feel resentful, or angry themselves?

This is what I struggle with ... whether it be directed towards myself or the girls!

Personally I find it easier to move past it when it's directed at me, but the intensity towards the girls, it's frustrating, it's sad, and it makes me feel helpless to protect them physically and emotionally

And physically he's not aggressive towards them, it's just if they "get in the way" of one of his bad moments of throwing something

but many times especially towards Sarah lately, he emotionally can be so hurtful- and yet in a moment later, want so desperately to gain her attention, to engage in an activity, to participate in something with her... without even realizing a little bit what his actions moments before do to her, and how that affects her

and as amazingly forgiving as that little girl is, (she truly is an amazing little sister)

it's heartbreaking to see the hurt he can cause her, and then want so badly to play with her

and if I can hardly process these strong feelings quickly, how can she?

And yet many times, she does!

She too wants to feel accepted and loved by her big brother, and we do talk about his struggles, why he does some of the things he does, and how she can help him by her response.

Did I mention how amazing she is?

Anyway, the day to day over here is one of surprise usually

one that in a moments notice will change

one where I have absolutely no control over what will come

and I guess these days I feel a bit on edge because of it

One where I never know how he'll respond to anything at any given moment

HE is so reactionary and it can be with great joy that makes him smile

or one that is with despair and frustration and anger

So, yes I've been avoiding you... sometimes it's just hard and I have to just get through the day

the moment, and breathe

I just don't have room right now to fully process all the good and all the bad

these are my issues.... I'm not good with this huge range of emotional roller coaster

It is hard..... but I count my blessings of all the good we've seen lately

and pray and want to believe that all the difficult times too are a lesson and will pass..... but lately

It makes me wonder what our future holds...... and that scares the crap out of me. So I'm going to avoid it and stay present...... for my own sanity and I definitely don't want to miss out on any of the good that I know will happen!

A lot of good stuff!

There have been so many good things this week, where to begin.

And in those same 24 hour periods, some how we've also endured some very difficult times!

For example yesterday, woke up with a stressed little boy whom I love beyond words

hitting me (it's 6:50AM... what could possibly upset him this much already???)

So not a good start to the day, by any means.

And then the day continued on, and well, was a pretty awesome day. In fact, he simply said at 8:00am "I"m bored" which is his catch phrase for all things... and he simply can't stop his mind from circling around and around enough to just exist

and so I reminded him about earning money (a system we set up a few weeks ago)... and he can go rake the front yard for 75 cents.

A value he and I agreed on

And this is the part that still floors my mind

(because you know I"ve never ever asked him to rake the leaves or give any suggestion of what he could do when he claims he's bored, nope never!!!)

And yes I"m being very sarcastic, because this is the world we live in where what we do and say which is always the same works wonderfully, we are the best parents in the entire world one moment, one day, and the very next moment or day

well, it's bad and unpredictable and well, nothing we say, don't say, do, don't do is right!

This is Autism!

Anyway, so he happily goes out and begins raking the leaves.... WHAT!!!!

Are we really seeing what we are seeing... and yes we watched him through the window.. because well, these are the things that fascinate us... and make us so proud.. and we don't want to miss it!

He rakes the leaves, into a pile, then he throws the rake, and then proceeds to get the leave picker uppers.. you know the leaf scoops!!

Then he uses them to put the leaves in the street gutter for yard waste pick up

then

he throws the leaf scoops on the ground and goes and gets the push broom!

Yeah, he's doing all of this on his own!!!

And then sweeps the leaves in the street into the pile, and then even goes and sweeps neighbors areas into nice piles

He created 8 piles... going to neighbors houses on both sides of us and down a few houses

(I am usually the leaf sweeper... and yes I commonly will sweep neighbors side walks, walks ways, and clear gutter of leaves and put into piles.. it's just something I have always done to be one. neighborly, two I"m already sweeping so, yeah.. and three it's good exercise, right!

And he did this too!

He raked, swept, and worked so hard out there!

How amazing!

And not only did I pay him his 75 cents, but he got a 25 cent tip!

Definitely so proud of him..... and he continued for the most part to have a good day, we all had a pretty good day!

Until bedtime..... and then he started to hit again!

ugh

He was becoming a bit obsessed with watching a show, and watching it for a good part of the day "Boy Meets world"

My friend had dropped off some new videos her kids had outgrown and Ty was very excited

But like many things, it's his entire focus!

Could be worse, yes!

But this is where the problem came in... it's 10:30pm and we did stay up a bit late to watch a Movie as a family- it was nice

But then he say's he's not tired and is going to watch a video in bed!

oh no!!!!

We have worked so hard to get him off videos in bed, and only allow books.... he will get into the habit of literally not going to bed until 1 or 2am when watching a video, where as reading a book with daddy (that is daddy reading to him), well, it's a good thing on many levels!

But it has taken a long time to get this expectation established with him

and tonight he runs into my room yelling Daddy won't let me watch a video, and proceeds to hit me!

really, here we are again just like the morning time- ugh

And it's been such a good calm day

It's amazing how quickly his mood can switch, and his obsession to watch this video at bedtime is absolutely ruling his being!

Well, eventually all ended, and luckily this morning, it's the first morning in 4 days he hasn't come running into my room, upset over something in his mind that is important, and hitting me

yeah....... this is why we don't miss the moments... because if we didn't pay attention and appreciate the moments, we would probably only remember being hit in the morning and being hit at bedtime!

But there was a whole lotta good stuff happening bet ween those 14 hours... a lot of good stuff!

sunset, fire pit, wine

A hard start to our day...

but ending with a beautiful sunset beaming through our amazing fall color trees.....

a fire pit and wine...

kids playing basketball in the street, and even some laughter!

another night walk

And another WOW moment

Ty wanted to go for another "night" walk with me and Gretchen, and we even ventured beyond our typical "comfort zone around the block" walk... we walked more than a few blocks, and he even was happily jogging, running way ahead of me!

Just WOW!

And then something else happened tonight

the sweetest quote coming from my little boy

when Brian asked if he was "ready" for something..... Ty simply answered him

"No, Sarah and I are playing!"

And they were playing, playing so well, playing for more than 5 minutes in fact

Don't wake me please!!!!!

voice of Autism

I just love this...... and it is so true!

A fantastic night walk....

With all the ups and all the downs..... a moment like tonight.... Ty wanting to go on a night walk with me and Gretchen.(as I do every night)..

not only is this HUGE because he never wants to, but he is deathly afraid of the dark -

and it rained today, so even this afternoon when he briefly went outside and yelled "worms are everywhere"....

. this is a huge huge phobia of his, always has been... AND we went for our walk.... at night, it was fantastic!!!

Another great one

And then he invited sister

At a usually really tough time of day. A transition. This is what happened instead of the usual fight and outward behaviors

Trains

First Monday that hasn't been , well a little hellish, and we played trains,  creating a world with passengers, farms, animals, police station, fire station, and lots of great engineering , and engagement, and sharing of ideas, and conversation, and a good way to start the week for sure.  And today is definitely not hellish!   Well the first part anyway:). But definitely a good way to start

from yesterday.... a huge huge first for him

A horse was at a neighbors house yesterday, and he so graciously allowed us to pet him, then lifted my Ty up on him

and led him around the backyard

Not only has Ty never been that close to a horse, never been on a horse, never been on a horse while it was moving

but I can remember to the exact moment the first time in his life

he stood in the same view as a horse, which was on the other side of a big fence, and Ty stood in front of the fence with the horse behind the fence, and about 500 feet away

and he was so proud of himself.... he was 6 1/2 years old.. when he did that!

so, yeah, a huge huge first for him on many many different levels!!!

And I couldn't be prouder!

know what's hard????

Want to know what's hard?

Seeing your little boy break down crying over the last two bites of coleslaw

even though he had the last real serving

so little sister who was "done" with hers but didn't finish decided out of the goodness of her heart to give the last few bites to Megan

why?

well, because Ty rushed so quickly to grab the last of it and didn't let anyone else have seconds of coleslaw

which was fine, except for the fact that he

was kind of rude about it

and then would Sarah offered her last few bites

he lost it!

He broke down.. he couldn't handle the emotion he was feeling

he threw some things off the table (luckily nothing major, could have been much worse)

and wept!

Then would get angry and try to fight

then wept some more!

This is how even a good day can so quickly end up in our household!

over coleslaw

It's really hard to see him get so so so upset, over coleslaw

which I know in my mind, was really not about coleslaw

what was it really over?

Not sure, I have theories

but you see, in our world here

I"m kind of celebrating too

he wanted to be mad as hell

and he kind of was, and then would allow himself to cry

as much as I hate seeing him cry so hard because he's so incredibly sad

it's an emotion we haven't seen in more than a few weeks!

and to turn his "mind" around after this "emotional turmoil" he experienced

well, it's tiring, it's exhausting, and it takes everything we have as parents!

I'm glad we ultimately were giggling over the dogs

but Autism does control our family most of the time

and all we can really do is try to "tame" it in the moment

that's what is hard.... hard for my son most importantly

So so hard for him

and most of the time, we can't do anything but be patient with him.

It's hard to see him suffer, it's hard to see him so out of control of his own body, it's hard to see him trying his hardest to "control" his world

but losing the battle in that moment!

That's what is hard..... but I / we will never stop trying

we will never not try to help him

we will never not keep him safe.... period! Just sucks when it's over coleslaw! That means he tried so so hard!

and for that, I'm proud of him!

Time change transition, it's been hard!

My day in a nutshell: lots of object flying

then calmness

playing baseball, playing basketball

more objects flying

ugh.... up and down is tiring!

And a lot came out with his rage..... ultimately he's mad at the time change because now it's dark when daddy comes home!

Yep, he thinks we have the power to " fix that"

Oh and it's a full moon, oh and did you know the spaghetti sauce I made last night had too many tomatoes in it

and that was cause for an eruption last night

and then when he found out we were having leftovers

well, yeah you can probably guess!

Funny part is he rarely eats what we are having, he's so picky

so last night he ended up eating a bagel for dinner

and check this out- he had a sandwich tonight for dinner AND

he had some spaghetti

Brian simply picked out some "tomatoes"

but either way, it's just that kind of 24hours!

Hope the next 24 are a bit brighter!

I have to admit, today was tiring.. I just couldn't keep up with his emotions

and I was reading him all wrong!

That's I"m sure not just frustrating for me, but I"m sure for him too!

Hope this "time change" transition, ends sooner rather than later!

It's hard when we mess with the time!

How to explain the time change

I am in such denial that it is now November!

And it's been so funny, hard, exhausting trying to explain to my littlest that yes even though our clock currently says 8:00, (I had not changed them yet and well, yeah...) it's really 7:00am ...... but why? they would both ask

and we would do our best to explain day light savings and how it's ending

but why

you mean yesterday at this time it was really 8:00am but today it's now 7:00?

Yes, that's how it works

but why?

and then oldest chimming in with her "opinion" and how lame it is and the government shouldn't mess with the clocks.....

and then that starts a whole round of questions and once again the question of why!

It's pretty comical, and yet wow their persistence is now well, getting annoying

hahah I just have no other way to explain it for them to understand, it just is what it is!

And what is so funny is for myself, especially as a kid, man I just accepted it... and moved on, never thought another thing about it

but I have to say, my kids question everything, are curious about everything, want to make sense of everything, want to understand everything

I guess that's not so bad..... more of fatiguing at times

especially when I know I will never have the answer to fully satisfy their little minds

which of course means only one thing

GOOGLE it!

So the next time they bring it up (as I've set it aside for right this minute) it will be time for a history lesson on Day lights savings time.

and of course with my one little guy, I"m just really hoping that this gaining of an hour doesn't totally screw up his "system" as the change in time is playing with our natural circadian rhythms which until better adjusted causes dysregulation, and in a kid that is already so dyregulated... how can he possibly "regulate" when this change in time occurs.... We really see his regulation and abilities to regulate change with seasons- so many "external" inputs that are always changing... and it literally messes him up for at least a few weeks until he "more or less gets used to it".....

when he was little, he would never wear a jacket the first month or so it began turning cold

I had the kid that people would say "shouldn't he be wearing a jacket?"

how annoying that was, as if I didn't put a jacket on him, or at least attempt to, or offer it.. and it always was rejected and thrown back at me

But trust me, as the season continued, by the time it got "that cold" he was willing to put a jacket ont

I learned, who am I to say he is cold? Just because I am, clearly his body processes everything so different

but we saw this repeatedly through his younger years... and then also he would take a while to "take the jacket off" even as season warmed up..... he was used to wearing the jacket, and that's what he did, even on hot days

and again ultimately he would eventually take it off, and again the comments from "public" of "isn't he going to over heat?"

why, just because he's wearing a winter jacket and it's 85 degrees? I guess he won't-

he'll take it off when he's good and ready!

but like all things- things happen on "his time" "his way" "his idea" "his decision"

Because that's just how things are......... so here we go again, into a "new external change" change of time, with the upcoming changing of the seasons

changing of weather, changing of how much daylight we experience

which means how long he can play outside doing what he loves- basketball

before we tell him it's not safe to be in the street playing when it's dark- our rule is "when street lights turn on"

boy that's going to happen pretty early today! Better be ready ;)

Halloween!!!!!!!

Another Halloween has come and gone!

wow!

But one thing is certain- my kids love Halloween!

and as far as behaviors go..... one of 2 things is happening- either the higher dose of the new med is doing it's thing

and /or he was so super motivated and was in such a happy mood yesterday!

Now I'm thinking there's a combination of things going on, because reality- he just isn't in that kind of control over "his mood" or his" reaction and body"

I wish... but until neurology is in a better place, all the brain chemistry a little less "off"

well, how could he?

But it was a really great day! Despite the pouring down rain here in California during the middle of the day

and the outlook of trick or treating was not looking good, so Ty and I made a pinata so that we can still have a very fun halloween party of our own!

But the weather cooperated- rain stopped before evening time, so Brian and Ty and 2 dogs went around the block (as we started off all of us, but after Sarah took a huge face plant spill - can you say OUCH) Ty was becoming more agitated because well, that's just what happens when he has "a plan" and things are not "going according to his plan"

So ultimately we split up.... best thing we could do (Ty didn't want to start this way originally, because all along I knew this would be the best for him)

But that's how things are sometimes!

So trick or treating finally ended, Ty was quite the halloween host answering the door, complimenting costumes, and dishing out candy to all the other kids!

Yeah, I know.... woo hoo!!!

Then the evening festivities began!

candy sorting, candy trading.... and then PINATA!!!

Didn't think it was possible for the evening to get better then successful trick or treating!

But it did!

Megan, now that she is older was off with friends, so it was just Sarah and Ty

And quite honestly, the 2%Ty that we hardly ever see (because all things are just too tough all the time, but obviously stars were in complete alignment for him yesterday allowing him to

be present, be happy, be caring, be

well, himself that hides most of the time!

It was beautiful!

And I just love the candy trading negotiating that occurred.. especially because Sarah, was not going to be taken advantage of this year!

That girl had some tough negotiation skills, and under other circumstances that would have infuriated Ty

But instead, he played more fair!

YAY!

So proud of those two, and after Megan came home, it was late, 10:00pm

the candy trading negotiating continued with all 3 of them!

WOW!

And then

they decided to play 21 using candy as the currency!

REALLY!!!

I know, things just got better and better- and well, Brian and I would just smile- it was great to see!

It was a good day for my kids!

And as I know to never look past a moment

we celebrated, we glowed with joy

and well, let the moment happen, with always the thought

in our world

this is usually just a moment, a few moments rolling into the other

But moments end, the day ends, and with a new sunrise

we just never know what it will bring!

October 1 starts his obsession with Halloween!

All things Halloween!

Now it's November 1

what will come up next ( I am pretty sure I know, but I"m trying really hard to hold off - because Christmas is so big and honestly, I just can't believe we are almost there already!

So, November 1 will just be November 1, the day after a good day!

simplest of things, just isn't

My boy wants so badly to go the pumpkin patch!

I want to so desperately take him!

But I am not confident even a little bit that he will be able to tolerate it!

He had a good day, he slept a lot which tells me his system is right now in a "recovery mode"

it just is what happens to him

but still during transition of Sarah coming home

she and I had to walk!

Walk down the street, away from his threats, his verbal aggression, his raising fists

so despite him wanting so badly to "earn" the pumpkin patch

the simple thing is he is not in control of himself

period!

And even if he tolerates the 30-40 minutes (because experience has always told us leave on a good note after about 30 minutes...

anything past that, well, it's anyone's guess how things will end!

so even if he tolerates that brief time

what will the rest of the day be like

What will he be like!?

It is too difficult when he becomes physically aggressive, so much that it's not worth it

I want to take him

I want to enjoy a very special outing, and I want him to be successful!

But this week, the past weeks, right now, I do not believe he'll be able to do it successfully!

And that's just not fair to him

He has no connection to what happens to his body during anything even remotely stressful to his nervous system

When he's aggressive, verbally or physically

he is completely out of touch with what is happening to himself, to his body, his behavior, his actions

fight or flight is almost an alternate universe

sending him beyond what he is able to handle appropriately

sending him to react as if he is being attacked, as if he is being threatened, as if his entire being is being assaulted by his entire environment around him!

How do I protect him , from himself!

How can I possibly take him somewhere, when I know darn well, it will end up causing him to "react" and cause him to behave in a way that is completely out of his control- he's not there when this happens... he's just not there!

I want to take him to the pumpkin patch, but I also know there isn't a thing I can do to help him when (not if) when this happens

and I don't want to get hurt, and I don't want him to get hurt

Right now, it's literally dropping him out of the nest without wings to fly- no tools, no ability to reason and come up with a plan to survive other than panic and fight with all his might!

How can I possibly put him in this position, knowing this is the outcome

This sucks- because the simplest of things, is

not that at all in our world!

It's just not that at all!

What a day....

Man.... over 3 hours spent at GI doctor's today - for littlest.... wow she has some serious patience!

Then after meeting her new teacher because we have switched her out of her current class for reasons that will only improve in a new class-

she was excited, she was thrilled there are class pets, and they do art, and then

and then........ she and Ty were outside at the same time, playing

not together, but outside, in the front yard, he playing with his bow and arrow set

she jump roping!

And I swear, she really is an Angel on Earth- because for the amount of time she spent crying because Ty was being just straight up mean to her- hiding her snoopy, just honestly being a jerk (however, I get that he isn't really being a jerk, he clearly was struggling greatly to gain some sense of control over his world, which was evident by him trying to control Sarah, although she doesn't go with that and then he says very unkind things to the kindest sweetest, and most forgiving little girl he will ever know!

and to prove that, there she was, playing outside

invited by Ty

although not to play with him, just to be outside with him!

And that is a gem moment!

And boy did I need to see that.... that is the kind of moment that reminds me

he is just a little boy who is trying so so hard

even if, well, he makes things very difficult.

It's a lot of effort on his part, and I will remember that for tomorrow!

I just love my little Belle and my little guy..... and it warms my heart to see a good moment between them - it's been a while!

It's a start.....

What a week!

We start off this weekend with RAIN

my boy waking me up at 7:30am politely asking if we can make pancakes for daddy

and before we could eat them - he's back asleep!

This is the first morning he has taken a nap in well over a week!

Lately it's been an afternoon event

I swear just when you think you understand and he switches things up on you ;)

But another switch was how he woke up this morning

my dreaded saturday, which is tough because it's different then Monday thru Friday, everyone is home, daddy is home, everything is different

therefore behaviors, and everything being a struggle...... but today

Ty has decided to switch it up on us and well, things were definitely calmer for him

despite it being a saturday!

That is a good change up!

On Wednesday we increased the dose of his Memantine, he wasn't appearing to have any side effects and the low low dose just didn't seem to be doing anything- so psychiatrist said go ahead and double it to 7mg

(which is great because I' m no longer having to split a capsule!

That is not easy

It's been 4 days.... on a scale of 1 to 5... one being a really really hard day and 5 being a really really good day

day one was a 2, day 3 was a 3 and day four

I would say a 3.5.....

so moving in a good direction

maybe the med is working? It's always so hard to say

If we see a continued increase in good days, then maybe

just maybe?? the Memantine is having a positive effect!

I hope so, but we've also been down this road before... esp when meds are proven to be effective, but in my boy

it's different, esp the side effects.. he simply cannot tolerate so many

but when brain chemistry is OFF

no therapies in the world can help until you get that under control, that is the challenge!

But maybe it will be different this time, maybe even just a little bit??

again don't like to put my hopes on the line

as we try and continue to do the very best we can for him

and we'll never stop

but the past few weeks I'll admit

has been purely EXHAUSTING!!!

and stressful, and simply really really hard

and I can't even imagine what they must have been like for him

I"m sure about 1000 times worse for him

and as frustrating as it is for us, can you imagine how frustrating everything must have been for him

so, we the rain has come down

and now the sun is shining

we are starting off this weekend in a very nice way

don't know if it will continue, but at least it's a start!

sleep is beautiful..... it free's him of his obsessive thoughts

Well, he is asleep right now

after almost 2 hours, okay, 1 hour of really tough behaviors- OCD obsession with "buying" seeds "buying " a frisbee for Gretchen

and not having anything else but that focus and destroying anything in it's path of not getting it

so needless to say, house has stuff thrown EVERYWHERE

my purse contents thrown all around the living room, paint bottles thrown at me in the family room

well, to say my house looks a bit like war zone

yeah, it does

on a positive note

it ultimately ended,

he got "focused" on something more productive, healthier, and got off the OCD buying thoughts

and started playing with Lincoln Logs, building

then wandered into my room where I was finally getting dressed for the day

and although his thoughts started to come back as he lay on my bed

I could tell the boy was going to fall asleep

I didn't move, I didn't talk, I didn't do anything

I just sat there, and ultimately

he let go of his thoughts, he let go of ideas and he let his body slip into slumber

to regain energy, to organize, to relax, to be calm, to be free of thoughts, fears and worries

sleep is beautiful, isn't it!

And I'm tired now too!

This too will pass..........

trying to not be negative

but it is absolutely exhausting beyond exhausting when you have a child, who requires 100% plus of your attention due to severe anxiety and dysregulation and his ability to cope is in the hole and all he can do is bounce off the walls trying his hardest to "make himself feel better"

We are in the midst of a huge transition

changing meds, he's growing, the environment around him is in transition- Halloween festivities are on his mind, the days are getting shorter, the nights come much quicker- when he is used to playing outside till 7 or 8

It's now dark, there are more dark hours than light hours

and for a child who desperately fears the dark, well that creates for a very uncertain child who feels more anxious, more out of control and more fearful of his surroundings

and that sucks!

We started on a higher dose of Memantine today- as he doesn't seem to be having any side effects, and really having no effects- so we went up on the dose!

We'll have to wait and see... and I'm going to have to dig really really deep into my patience vault because he is on my last nerve these days

He is very difficult to be around because he's angry and constantly having outbursts

but yet seeks desperately to be with me or Brian because he is so insecure and out of touch with his own body

These are the things I know, and I know it too will end with time, he's changing, we're in a time of change, and well that is the hardest thing in the world for him to handle

He can't help it- if he could, he would!

This is my rational brain side... then there is the tired, exhausted, frustrated, not getting one quiet minute during the day

it's constant chaos, it's constant inability to focus and make good choices, his constant everything

and it's not his fault, it's not anyone's fault

This is just how life is at times-

but hell it is so hard sometimes!

It starts the minute his eyes pop open and ends only when his eyes finally close at the end of the super long day

and even that, he is NEEDING to sleep with Daddy again- which tells you how hard this time is for him

he was doing so well, sleeping in his own bed, with Gretchen and well, he just can't right now!

So I need to stay strong, he more than ever needs to rely on me being consistent with everything else is crumbling around him in his mind

I will do my best to stay calm and balance his inability to be calm and grounded

and I will as always just continue to love him, no matter how hard some days and moments are

and I do know, that this too will pass!

I"m just hoping sooner rather than later :)

challenging him beyond his abilities......

What an awesome golden moment I witnessed between Ty and Sarah last night

pure golden

in fact, it's been more than several weeks since I"ve seen THAT kind of interaction and engagement with him and well, one of his sisters

In fact, he INVITED Sarah to play lego's

told her she could be the princess

and this is the new rented set that came in the mail yesterday

This was so wonderful, and even after all the bologna Ty has given Sarah for over the past several weeks

really targeting on her and literally just upsetting her over and over again (again negative or positive attentions, doesn't matter most of the time to him)

so so frustrating and here Sarah is so happy to be asked by her brother to play with him

and well

it was a pure golden moment!

Can't say the same for this morning now, with Brian having to work today, when Saturday's are already really tough on him

today has proven to already be challenging him beyond his abilities today!

So, I'm having a second cup of espresso coffee

it may need to be something stronger later today- hahahah lol

but that's what this day is bringing

so that's what I will do to best support these overwhelming difficulties he is having

but it just sucks!

Tired and... well........

Feeling a bit tired today!

Luckily the new lego set arrived that is "RENTED"

this is the greatest thing ever for a kid like mine!

But in about 1 hour and 20 minutes (probably not quite that long)

over 400 pieces of lego builders set

constructed

and done!

That was fast!

He did start playing with it a bit which was nice to see

it had a catapault which is pretty cool!

But feeling tired, and as October is quickly running into November

I"m feeling a bit sad at the thought that

probably no pumpkin patch visits this year!

Our yearly fun expedition I just don't think we can manage

I don't think Brian or I have the energy, the stamina to tackl the pumpkin patch

sometimes things so simple

are still so so so so hard!

I'm even hoping to take girls out and then

seperately maybe take Ty

but not sure

just don't know if the price will be too high to his nervous system

Just not sure if he is in a place right now that he would be able to handle that simple outing...

just some days are harder than others to stomach this

and that just sucks.

My golden moment

The days just seem to be flying by!

Is it just me or wow... wasn't it just July??

Gosh, Halloween is almost come and gone then onto the Holiday season

then the new year...

and.. well I just want everything to slow down , even just a bit!

As wonderful as the holiday season of Thanksgiving, Christmas, New Years (those are the celebrations we have in our home)

but wow... slow it down!!!

On a different note, and fun Halloween, I made Megan's Peacock Tulle no sew skirt for her costume today

I"m loving it.. and it was so so easy!

And although the morning with Ty wasn't horrible

his over reaction to "things" got my focus elsewhere until he could better pull himself together (boy he was overly tired!)

and as I started to work on Megan's skirt, he got his own creative thoughts pumping through his brain and "created" a costume for Oliver, made Sadie a Zombie, and well had fun with the dog Halloween concept

which allowed me to finish Megan's skirt- and well, that was quite nice!

Not having behaviorists come into the home any more certainly doesn't allow me any time for myself (not even to go to the bathroom by myself, maybe that's TMI, but my kid is at my side ALL THE TIME!)

So, I know this is the best thing for him right now, but it can and is down right exhausting

all the time!

So for me to do something of my choosing, even for 20-30 minutes, and without him freaking out on me

well, that truly is a golden moment for me.

and I"m not one that is well, one that has typically gotten "me time" or has even been good about setting time aside for "me time" and I guess after almost 13 years of motherhood, 16 years of marriage, it's just not a huge "worry" in my book- sure at times it would be nice, sure at times I desperately need it

sure at times I wish the world was one in which I am just simply granted a little R and R without having to step back into the world and still having to take on the things that went wrong while I was out, or have struggles upon my return because transitions are still very difficult and at that point all things are null because it's just too hard to handle the transitional behavior... so you know, it is what it is.. so when I can get my little guy to maybe possibly, even for just a little bit of time get engaged with an activity that I choose, or I like to do, esp if it has to do with crafts, or something.. well again - a nice golden moment for this mommy! Now for all those that are thinking, I should take more time for myself, I'm going to burn out, blah blah blah.. yeah I know all that and more, Yeah I've heard it over and over like a broken record

and as I always say to my hubby, I wish more "professionals" "people" would ask how my son is doing, even half the amount of time Brian and I are asked "how we are doing" ....

that is a pet peeve of mine- don't worry about Brian and I, we are adults..

now my son, yeah be worried for him, help us help him, seems like all too often it centers around "us" and not on "him" and that is frustrating since we are still constantly trying to gather info and resources to better help him

so again- I liked my golden moment, I liked that my son participated in it with me

and that is just that.... my golden moment!

Our creations today

Almost two hours of awesome Lego time with my boy...and look what we both made.   And as the start of actually documenting for school purposes...we both made presentations to each other on our creations and details of them and what specific things do

like ladders that go up. Or like mine was a research vessel and took people shark diving.  Fun time with him

My first pumpkin latte

'Tis the season to try something new..... a pumpkin latte.   Happy fall

Playing

Day3: After a rough start to this morning, things pretty un routine

Megan staying home for just a bit due to a headache- it really threw Ty into well, a bit of a fit

But finally things calm for now..

in fact, he's engaged with Lego's right here by my side

playing in a world of helicopters, trucks, and little Lego men

and I don't dare interrupt him

I know the moments will end sooner than I am ready

by his own doing and own "ready for the next thing to do :

But for now, I'm enjoying peeking out of the side of my head, catching glances of his sweet play

reminding me of why we do what we do

It's meeting him where he is at in this moment

but seeing him

play, create, build, and re build

and interact with his lego scene as if he is a apart of it

that's how a little boy should play

nothing else around him distracting him

just pure focus on "playing!"

Day 2

Day two: not much to speak of with day two trial of new med

But that could also be good because hoping for no adverse effects

that is first and foremost

it's such a low dose that lots of room for bumping up as long as he's tolerating

So, the "no news" is also possibly "good news"

too early to tell, but no matter what

one positive from yesterday was

Ty deciding and agreeing and following through

on taking a shower!!!

Thank goodness.... he took a dog in with him

and he and Oliver both came out sparkling clean smelling good!

That's just a plus in every way!

Everyone deserve at least "one positive" in a 24 hours period, don't you think?? !!! :)

Day one

Day one of a new med: Namenda, Memantine

Starting off very low dose (having to split a capsule, not exactly easy)

Hoping for no adverse side effects, and then if necessary we can bump up dose in a week or two

Fingers crossed, and I hate thinking - a medicine could be helpful.. because so many times it just hasn't

or he reacts negatively to it, or has too many side effects to get any benefit from the medicine

But admittedly, this one is different, a different pathway in the brain, but with his positive experience with Ketamine in the hospital

and our anesthesiologists recommending we ask about it

well, gives us a little bit of hope

because all the "therapies" in the world don't mean jack if brain chemistry totally messed up

and that's where we are!

So, it's day one.....

advocate, fight, love, hope, listen.......

We advocate, we fight, we love, we hope, we listen, we pause, we reflect, we hug

We advocate, we fight, we love, we hope, we listen, we pause, we reflect, we hug

and after 10 years of advocating, of fighting, of loving, of hoping, of listening, of pausing, of reflecting and of hugging....... we have reached another level

a new understanding, a path of compassion

and that's exactly what Ty needed, what we wanted for Ty

and absolutely what he deserves from everyone

Music to my ears

I can't believe what we just witnessed!

Ty and Sarah being so incredibly playful... Ty initiated of course, because, well that's how things are always

but he got playful with her, and out of nowhere

picked her up and carried her

which of course my mind can't help but think how awesome that proprioceptive input is- he's carrying a 50lb girl

and then he gave her piggy back rides, and they are laughing and giggling together as two beautiful carefree spirits

and then I just heard them yell to me, look we can still do it

remember when we did this.... and they are practicing dancing routines, with lifts and tricks, and twirls in the air

OMG OMG OMG... Brian and I just simply looked at each other,

because this was so out of the blue, this unbelievable positive mood, this playfulness like we haven't seen (in I have no idea how long)

and his engagement with his sister, which the look on her face is absolute priceless (she loves her big brother so much and just wants to be able to "participate" in fun things with him

and the giggles - oh the giggles!

Music to my ears... absolute music to my ears!

This is just the most unbelievable moment- those two have always had a very special bond

I think it's because Sarah truly has an absolute unconditional nonjudging love for her big brother

and when he allows her to participate with him

she glows with glee!

OMG OMG Omg.. how can it get better

He just asked her if she wants to play a board game!

A Board game - holy crap!

What is happening over here..

It's so uplifting to see- just something I have been needing with things going so bad soso bad lately!

But this is EXACTLY why we will NEVER GIVE UP

otherwise we would miss moments like this one tonight!

Absolutely amazing and precious!

Trending upward?

this is a good post- a good reminder of what T bone may be going through, and clearly we are always guessing.......

important to remember we still don't get him...

and I do believe he does not WANT to "cause the chaos and problems" .... that his behavior does...He does not enjoy it- HE struggles so much

. I like this guys post about it- the kids perspective...

because we know Ty is a loving caring boy who wants to do good on the inside- it's just so hard for him almost all the time... -

this morning is first morning he simply fell asleep without any ANY behavior first... that's a good thing!

I love that my hubby is always ready to help him .we make a good team, actually we make an AWESOME team... Ty loves daddy so much- and Brian is such a good role model for him- someday it will show more...

but for now, we'll just keep loving him and helping him......

last night after he threw something and hit Sarah.. she started to cry- and he ran away angry,

but came back a few minutes later on HIS OWN, saying sorry Sarah.....

it's in there.. it may be deep deep most of the time- but his true beautiful loving soul is in there-

and he doesn't want to hurt his sister ever- or us... because he does love us- He loves his family..... ! We love him! :)

hoping today is a trend upward kind of day!

Autism Discussion Page 6 hrs · Edited · Do you think I am having fun? From the child’s perspective! “Do you think I am having fun when I scream, fall to the floor and repeatedly slam my head?” “Do you think I am enjoying it when I meltdown in the middle of a classroom with the other kids staring at me?” “Do you think I am having fun when I cannot sit still, and am running around the room, bouncing off the walls, ignoring your assistance?” “Do you think I am having fun when I am staring into space with glassy eyes, and turning away to block you out because I am overwhelmed and shutting down?” “Do you think I am having fun when I repeatedly hit my face with my fists until all the frustration is gone?” “Do you think that I enjoy hitting, kicking, and biting you when I love you?” “When I hear people discussing my behavior, what is there that leads them to believe that I like to do this; that I find enjoyment in creating havoc, stress, and anxiety for myself and others? Do you think I would do this if I had better ways of dealing with the problem? When I am continually acting out to gain your attention, you say I am “seeking attention” (like I enjoy it) and then put me on extinction. Do you ever think about “why” do I need constant attention in the first place? Why am I acting inappropriately to obtain attention? Instead of ignoring me, try and listen and understand why I “have the need” to act this way. Seeking attention may be the obvious reason, but ask yourself (1) why do I need so much attention, and (2) why am I using this behavior to get it. Don’t just “ignore” me. It doesn’t teach me anything, but makes me feel isolated and unwanted. It does not deal with why I need the attention, or teach me better ways of getting it.” “When I act out because of the demands you place on me, you force me to comply so my acting out is not rewarded by allowing me to escape. You say I act out to “manipulate” you to avoid things I do not like. Have you asked yourself “why does he feel the need to escape or avoid?” “What is there about the demand that makes me want to run?” If most children willfully comply, why am I resisting so adamantly. Don’t you think if I had the tools and felt confident enough to do it successfully, that I would also “want” to do it? If my brain is overwhelmed how can I think and cope? “ “When I become overwhelmed in events with overpowering sounds, sights, and smells, why would you think that forcing me through it is somehow helping me? If my brain becomes overloaded with stimulation, how can I be expected to “handle it?” What is that teaching me, if my brain doesn’t allow me to learn during those moments? How can forcing me to be overwhelmed help me learn to “handle it?” “I wonder why you do not ask these questions. You call me a manipulator, lazy, disrespectful, oppositional, etc, like I somehow intentionally choose to act this way; assuming I know how to act differently. At your meeting, you sit at a table and discuss among yourselves how I must learn to act better, to not be spoiled, learn to respect others, and comply with your demands; like I am so how having “fun”, intentionally choosing to act this way. You do not look at what you might need to change, but try to force change on me. You scold, force, punish, and restrain me, like I purposely want to be this way. Are you that DUMB to not think that if I knew how to do it right, and I felt confident doing so, I wouldn’t have more “fun” being cooperative and receiving the positive attention and rewards like all the other children. Look at my face! Look at my actions! Look at my emotions! How do you assume that this is fun?” “Please let me tell you, if I felt good about myself, confident in what I am doing, and safe and accepted by you, I would not be acting this way. Either the demands of the situation are greater than I can handle, the way you are supporting (or not supporting) me is overwhelming me, or I do not feel “safe” in doing it. I do not mean to “piss you off!” I do not find joy is making you angry and lashing out at me in frustration. I am not having fun in watching everyone stare, scold, and ridicule me into submission. How do you think that timing me out, taking away privileges and restraining me helps me to feel safe, accepted, and competent in your presence?” “Please, when you look at me struggling, assume that I am feeling anxious, insecure, and most importantly “inadequate” at the moment. The stronger the opposition the more insecure and inadequate I am feeling. Then, ask yourself how can you (1) change the expectations and demands to better match my abilities, (2) how can you provide greater assistance to support me, and (3) teach me better skills for meeting these expectations. And most importantly, in the heat of a meltdown, think “how can I help him feel safe”, not “how can I control him.” And when it is over with, ask yourself how you can change the conditions next time to avoid setting me into “fight or flight”, rather than how can you punish my behavior into submission. You are the one placing me in these conditions; you are the one who has to learn to change! Yes, like for all children, I need realistic boundaries and consequences to learn to be successful; however, meet me where I can realistically succeed, be a supportive mentor, and please do not assume that I am having “fun” and “prefer” to act this way!” “Thanks you for listening to me. Please do it more often!” This series on Challenging Behaviors can be found in the green book "Autism Discussion Page on Anxiety, Behavior, School and Parenting Strategies."

Playing is good

He s playing tonight! He using his imagination! This is good

We don't need anything other than love and support

He's asleep! He's quiet! He's peaceful! He's sweet to look at!

Tough weekend for my little guy!

Not only was it "the weekend" which throws a wrench in the "routine"

but daddy had to work in the morning of Saturday

then mommy was gone most of the day once daddy arrived home because I was working at the theater for Megan's performance!

That is what we call a "double whammy!

But with some of us out of the house, that's one positive - it makes it less stimulating environment!

And the day certainly could have been worse!

In fact, when I checked my phone before the show started- I saw that home had called!

of course, I"m always quick to think- oh no!

So I called back and there was Ty's voice on the phone

and I have to say, there is something about his voice on the phone- he may be 10 years old chronological age

clearly developmentally he's NOT

and on the phone, he sounded so sweet, and so little and reminded me of when he was 4 or 5!

It did melt my heart- he's so cute talking on the phone (which by the way is a fairly new "experience")

He has started wanting to call mom or dad when one of us is out to tell us "something of great importance of course or to say what someone is being mean - his perception when he doesn't get something he wanted when he is in a more regulated state of mind"

It's cute and funny and of course I would never dare say that to him- that would flip him inside out!

But again, his sweet voice when he's talking on the phone, and you are on the receiving end - it's heart melting!

Anyway, we definitely threw some big holes in his already unstable mind set from this week and well, waking up this morning wasn't even a little bit comfortable- but he without incident now is back asleep!

NO fits, no tantrums, no meltdowns, just laid his head down on the dog bed, in front of the TV watching sports highlights, and quietly went into slumberland!

How great is that... just what his little body needed, and more importantly he didn't fight it!

It didn't overwhelm him, he just went with it rather than resisting it!

That's a good thing! A very good thing!

After Brian had the appt (since Ty wouldn't go) at psychiatrist, and she believes he has outgrown his current dosing regimen for the meds he's on, which makes perfect sense when we see behaviors, agitation , occurring when environmentally things are improved- we just know these things... so increasing the dose of one of his meds - which will hopefully help him with his mood, irritability which then sends him into meltdowns- and then we in one week will be trying a new med. It's a bit scary to think about "trying" a new med- but we are at that point.... he's just not functioning in our home environment, everything is difficult no matter what... it's time to "consider" something different! That will start next weekend... don't know what it will bring

But we have to try something....

We are committed to him, will never give up, and trying medications at home is priority rather then "placing him"

People can suggest that to us till the cows come home

That right now is not an option for us, and I love love love that my wonderful husband advocated on his behalf and in only a few words said "but he craves love, craves snuggles, that helps him- and needs that - he is our little boy, he needs us!" "somewhere else, there is nobody to love him the way we love him!"................

what does the future hold, who knows, he is only 10

and no matter what, we don't believe that would be a better situation

no matter how hard things are, and can be

we are in a funk, but we always know, it will improve

good moments come with bad moments and good moments will fill us up once again!

People just don't think we can sustain "our bubble"

but as hard as it may be, when you see him thrive, shine, grow, my goodness it fills us up with hope and confidence that we are providing what "our child needs"

Even if it's not typical, even if it's not easy, even if it's frowned upon by others because they simply "don't get it!"

None of that matters- we get it- Brian and I get it!

And why on earth would we not do everything in our power to help our son- we simply would, we simply are, we simply will continue!

Family looks different for everyone- this is what our family looks like

please don't judge!

Please support with a simply smile

we don't ever need criticism, we don't ever need harsh looks or words

we don't ever need anything other than love and support-

and on that I will end ..... it's been a whirlwind week, a whirlwind weekend, my head as you can tell is spinning with my own thoughts, emotions

and I'm going to take this time while he is asleep to gather myself, ground myself, to take on the rest of the day and what ever it presents to us!

what a long day it was......

I know it's been a few days since I last posted, and well

the last few days have been quite the hell over here!

Ty just has been so extremely difficult, so extremely dysregulated, so extremely everything!

Outburst after outburst after outburst

Brian had to come home yesterday after I had been already out of the house since 8:45 (due to his behaviors)

me escaping is the best

but just couldn't get him calm

Those days are hard, those days just make a parent feel so helpless!

He had a psychiatrist appt in the morning, which we don't tell him about until that morning, he has been seeing her since he was 5

and hasn't seen her since July

no big deal, just update, plus we had medication questions, and well it's just time for her and us to check in

and mind you we had to do virtual appt because we couldn't get him to go for about 2 years-

anyway- yeah you guessed it, he refused ... I of course offered the motivation aka reinforcer of getting french fries after the appt

quite appropriate, it's a highly sought item, and some thing to motivate him

and well - no.. that was not what HE WANTED

I had just sent him back into a major OCD compulsion of "buy me a toy"

and he's now spiraling and obsessed

and it really just means he's not handling the news of having to go see the psychiatrist (we don't call her a doctor, because well that sends him immediately into PTSD)

and yeah, behavior, aggression, verbal insult, throwing.. everything

everything occurred!

And after HOURS of this and me being outside the house, and I hadn't even been able to make my coffee

my dearest BFF friend in the entire world drove by my house just to "check in and make sure I wasn't locked out of my house because she knows my situation and says she does this regularly just to make sure I don't need something and how amazing is that- how awesome to have a friend that cares so much that she simply knows I very well may be locked out of my house at any given time and just drives by to check in on me

and yep, she found me walking around the neighborhood and yep she went and got me a coffee, and yep kindly got Ty and smoothie

and well, that was exactly what I needed in this moment of quite honestly depression and not anger, but so extremely frustrated at this situation

but of course nothing smoothed thing over for my little guy, it continued on for several more hours, and that's when I ultimately had to call Brian to come and help.. I didn't know what to do! When he's like this, it usually takes 2 of us to help him

Long long story short

Brian by 1 went back to work, Sarah came home from school, (again thanks to my dearest friend for picking her up)

Megan came home, Ty and Sarah actually played a bit together (making potions)

and well, the day continued on as usual

putting the earlier events to rest and in the past

Because well, that's just how it is in this crazy world of our life!

And I"m sure it will be a "to be continued" story as it always is

that's just the ups and downs of living with Autism (and OCD and ADHD, and PTSD, and medical problems, and mood disorder.... yeah- ups and downs is the one thing that we can count on!

Words-

love this from Autism Discussion page:

"The biggest mistake they we make is assuming that people on the spectrum with good verbal skills, have good ability to understand the "gist" of what is being communicated. When we do we interpret their misjudged behavior as intentional."

Words are words, but it might as well be silent if you can't COMMUNICATE ..... very misunderstood with my son... he is so verbal... and if you pay attention close enough (or you know him).. it's script from ESPN, from sports shows, from movies, from TV shows, from us his parents

and he gets very frustrated when he can't properly communicate his needs/ wants/ desires properly

leading to behaviors

and we've literally been told "he can't have Autism, he talks so well"

Pay attention people, pay attention!

and more importantly if you don't know anything about Autism, then really nothing should be said about my situation! Thank you very much!

My boy talks, he's smart, he's funny, he's caring, he's loving, he's an amazing athlete

but he struggles, he struggles some days to just exist

he struggles to communicate, he struggles to sit in a chair, he struggles to understand what is being asked of him

He struggles and well, he struggles more than the average child, and I will continue to fight stereotypes, fight to make life better for him, fight to help him be happy, fight for him and fight to get him the resources and tools he needs to succeed! I will fight for him- and I will continue to give him the words, language skills so that one day he may be able to fight for himself!

Today- ......... I will just breathe at this moment!

today- in one word

sucks!

It's been high

and it's been low

and then it's been lower!

The minute things seemed to have been turned around

boom

he's exploding again

his mood is all over the place

he has no idea what he wants,/p>

but is angry we don't know what he wants

so today- just sucks!

Quite honestly, I'm so tired of the explosions- I"m on the receiving end and he has no idea his own strength

I do, it HURTS!

So, feeling sad- feeling frustrated, feeling confused, feeling a lot of feelings!

ahhh I need a new day, a new sunrise, a new 24 hour period to get myself in check so that I can then better help him get in check

this is the vicious cycle of Autism meltdowns- Mood disorder, ADHD, PTSD

whatever the cause

the vicious cycle of uncontrollable behavior, uncontrollable emotions, uncontrollable everything

and as the parent- trying- desperately trying our damnedest to get a grip, get control, help everyone lost in the cycle to reach solid ground once again!

But it is really hard sometimes!

Just really hard..... and this cycle, happening these past few days, going on right now

is hard to get a grip on

and is taking hold of me!

Breathe- deep breathes,

I will just breathe at this moment! I will breathe

I will feel the depths of my soul touch solid ground

and then reach in and stop this cycle

This cycle is just a cycle

It will end

It will move on!

It will be forgotten.

Just breathe!

Oh boy......

Once again- perfect timing of a good reminder: From Autism Discussion Page: "We need patience, consistency, and frequent repetitions to teach consistent routines."

" 1. Poor ability to check their impulses long enough to “think” about what to do. 2. Poor ability to “appraise” what is needed and how to do it. 3. Poor ability to monitor what they are doing, while they are doing it. 4. Poor ability to read the effects their behavior will have on others. 5. Poor ability to “think” about the consequences that will happen. These are all “executive functions” that occur in the prefrontal lobes of the brain, that are weak in all young children, especially those with Autism and ADHD.

Yep,.... all of this!

and yep, it is tiring!

I'm sure for all of us.... this is 24/7!

Needed this reminder