Smelled a whole lot better!

Oh, one more highlight to top a good moment day yesterday!

I was hesitant to even mention it, in fear some crazy people who don't understand any bit of our world, decide- "we're simply unfit parents neglecting our child"

trust me, it happens!

Anyway, you know it was a good day for him when HE decides FINALLY after #### weeks (I'm not even going to say how long it's been)

but pretty much he has broken his already long record, it got that extreme)

oh back to what HE decided to DO..... TAKE A SHOWER!

WOW- Brian and I teased throughout the day- what good parents we are

this is what good parenting looks like

wow, we rock!

Because in our reality- we haven't done anything different, we haven't changed how we approach anything, we are consistent, we are his rock of constant

and today (who knows why, stars in the galaxy were clearly all aligned)

he chose to be kind to his little sister, ate at our dinner table, and for the first time in way too long, took a shower

He's a 10 year old boy, there is no more "forcing" a bath or shower on him when he doesn't want to

it's simply too dangerous- that's a pure "battle" that we just can't fight

him on, as badly as he stunk, he would wash his face (sort of) and he might have gone swimming a few times in the time frame (which almost counts as bathing in our book)

but since we had gone camping, (yes that is right he hadn't showered before camping and he didn't shower when we got home from a week of camping

unlike the rest of us who couldn't wait to get clean, to feel fresh again- you know that long awaited shower that feels oh so good after not showering

(BTW it's beach camping, there isn't too much dirt luckily, and he did go into the ocean ... that's gotta count, right??)

Anyway, I guess it was that kind of day for him, where he took a shower- on his own, came out smiling, said he shaved like Daddy, and well, smelled a whole lot better!

Wish I could take credit for being some awesome parent that her child cooperated so well with our requests

But if you are a parent of a special needs child, and especially a very difficult one with Autism and .... the laundry list

well, things for him are constantly changing, things for him are always different, his response is never the same,

but one thing is, our parenting!

He just responds differently to the same consistent parenting style that comes from love, patience, attachment, rules, boundaries, flexibility, teaching, guidance, understanding, and just simply wanting to help him be happy and successful- no matter what that looks like!

So, I won't take credit- just a pat on the back to know today, what we do helped him- helped him in a way that has been a very long time

a way that allowed him to simply help himself!

That is a successful moment for sure!

It was awesome!

Second day of school, Brian had to take Sarah to school

Ty fell asleep and there was no way I was waking him up

That's sort of how things are gonna go eventually anyway

So that all went fine and then a minor issue with Ty, but he ultimately used his words to scream "I'm Mad"

hip hip hooray!

How many parents love that their child screams I"m mad at them

in my world "he used his words!!!! "

So bonus for the day one!

Bonus number two for the day, he came with me without hesitation to get Sarah

we waited with Gretchen for just a few minutes before she was out of class!

He had several 'did you hear me" I said SEVERAL

amazing moments with her after school- starting with "Sarah can I carry your backpack?

to for the first time (at least that I can remember) of driving all of 1/4 mile back home and him not screaming at her while in the car

hip hip hooray again!

And it doesn't stop there, when we got into the house, there was no yelling, no screaming, no name calling, no any behaviors from him (which is not usually the case, transitions back in are tough for that little guy)

and and best part

Sarah was telling us both about this class play they are going to do, and she has the part of the rooster

and Ty tells her- ready

"Sarah I can help you learn your lines, I"m a good actor!"

wow!

And they did, they read the play TOGETHER!

sat on the floor, reading this play, and Ty was encouraging, loving, and telling her what a good job she was doing!

Quick someone pinch me... oh wait, never mind- please don't- if I"m dreaming I don't want to wake up!

This was just a wow moment beyond wow moments!

I didn't want to move, I was too afraid I could ruin the "moment" so I just sat there on the couch, watching, with amazement- because

well, truth be told, I was starting to wonder where that little boy has been lately!

It's been quite sometime since we've seen this side of him- this side that we know is deep deep in there

but life just makes it way too hard to come out

But today, we got to experience his gentle side- and it was awesome!

First day of school

First day of school.... I'm tired!

Little one is freaked out by all things and is glued to my side right now!

Literally

Big brother and big sister do not help in anyway by "talking more about it" and saying "there's no monsters"... if she believes there are monsters, then she believes there are monsters...

Just like they did when they were younger. and it just tells me how "stressful" starting a new grade, a new classroom, a new teacher and only a a few friends in this new class

and her tummy troubles definitely do not help!

I know she is struggling because she is never like this-

and although she has her own sensory issues and tics

everything is bothering her sensory wise, every tag has been needing to be cut out of her clothes, even though they are not new

nothing feels right, she tells me 100 x a day "she's emotional" and wants to cry

my poor baby- these are the times I realize she has her own "issues" and usually handles them so well- when she can!

She is my independent one, my one who may have fears, but simply goes the other way

usually her room, boy she loves loves her room- to just play hours at a time in

The last 4 days she won't even go in without me

She'll get through it, but these are the moments that when you have a child like Ty,

who takes so much of your energy, your time, your everything

I feel I have so much less to give to my other kids who "at times need me a lot!"

This is the hard part of being a special needs mom, that I wish I had more energy to give to Sarah and patience.

I'm doing my best, I'm really really trying- we made "monster spray" to spray around the house

that always worked for Ty and Megan to keep monsters away

but she confides she's afraid aliens are going to come through our walls, she's afraid of ET- yes the E. T. the movie we watched like 2 years ago and at that time the kids thought he was so cute

and as most parents know, I can rationalize with her till the cows come home, my words of telling her it's not real just do not have an impact

so for the time being, I do not mind her being glued to me, I don't mind her needing me every time I turn around, needing me to come to the other room so she can tell me her secrets

which are she's afraid aliens are real and going to jump out at her, and monsters are real, and probably a whole bunch of other crazy things that she wants so desperately to stop invading her head

you know, all those negative thoughts that even as adults sometimes in moments of stress, and more difficult times take over -

the negative things that deep down bother us, scare us, worry us that during tough times, know when we are feeling weak and invade like parasites

controlling our minds and taking over our abilities to make sense of things

I know, it happens to me, and always has!

My poor girl wants to know how to "stop thinking" like that, to stop "thinking about the bad things" to stop it all!

This is how I know it's been a tough week for her... :(

And really the only thing I can do is listen, hug her and tell her I"m always here for her no matter what!

and I hope that's enough to make her feel safe!

But boy am I tired!

Last days of summer

Where did summer go??

How on earth is it almost over and school is about to begin in 1 day?

I'm so conflicted about how I feel about school starting up- I know it will be easier for Ty

that part is good, it is just so hard for him to have all of us in the house - it's just too overwhelming

but my girls, will be off to school, littlest in Second grade already and oldest eighth.... how is that possible?

I feel like we didn't get enough time to just "be together" this summer, we were always kind of managing each day, to try and maintain some civility in the house

and I hate that- but it is what it is

that was the summer.... kind of a lot going on and it absolutely affected Ty

Gretchen helped him out so much in so many situations, but the reality is

his brain continued to misfire and run wild with over stimulation

and I"m sure the fact the my boy is now 10 and beginning to enter "pre-puberty" doesn't help all the things happening to him, all those hormones- ugh!

It's the reality, but yet makes things even more out of our control to help him, since he is still struggling so much to help himself!

The roller coaster ride has been very up and very down

and he's very hard to keep up after when it's that way

However, I feel very confident that with the girls going back to school, us doing a trainer to trainer model of ABA and not having people in and out of the house every day of the week

he and I can get focused and really bond and work together!

I'll just miss my girls-

But the kids did have a few good moments today-

Megan and Ty set up a "boutique" in our family room for Sarah to school clothes shop (from all of our hand me downs that are stored in buckets in garage.... love hand me downs!

and so does she, so she thinks it's the greatest thing in the world!

They spent well over an hour setting up, putting clothes on hangers, setting up different departments for the different items,

including a dressing room

and although Ty was absolutely trying so hard to control everything, Megan too was trying to control at least something- and therefore

the explosion occurred and Megan opted out of the "play"

but I was proud of her for that- she had every reason to not want to participate, Ty was being very controlling

so she was out of there!

Despite Ty's later plea to sort of try to compromise which to him is a compromise, but in reality his proposal was still very controlling every aspect of the play

but he was trying

Sarah loved it all, she loved pretending to shop, and try things on, and I think for her, knowing her,

she loved participating with her brother- because she (unlike Megan) really tries and tries and will give Ty multiple chances to figure things out

and only after many attempts and usually him being very mean to her does she finally decide to walk away and not want to play

but boy she is forgiving and really tries to help him so that they can play together- but some day's it's just too difficult

but today, the school shopping play went on for about 45 minutes which in my book is pretty good !

So, it is nice to have had a good positive experience today, I enjoyed it, and this also makes me a bit sad because this is pretty typical

things historically start to settle down for him in August, it's rough after the school year ends, then the holidays, then finally August comes rolling around and things start smoothing out, falling into place, kids laughing more, smiling more, getting along more,

and then BOOM school is back in session and we are back to another transition!

and then before you know it, Halloween, Christmas, and then New Years.. and well, it's hard to sometimes catch your breath when it's going by so fast!

So tomorrow, on the last day of Summer vacation for my kids, I will just breath, and enjoy the last moments we have before everyone is off to school!!!!

The week in review.....

Loved being at the beach- incredible weather the entire time!

A pretty fast transition for Ty, at first

but we planned to go to CCI for a follow up check and for Brian to get certified as a handler

and let's just say that kind of threw everything back to square one, just when we were making progress

We had some great great great moments,

and some very very very tough moments

Ty learned to boogie board and even went waist deep in the ocean for the very first time

and had a great time

Ty and Sarah had a fun time playing at the beach, which was definitely a highlight!

We were all at the beach together

As a family

more than once

but not without struggles

Brian was amazing, getting up with Ty every morning at 7:30am to go for an early walk with the dogs

That helped him a lot!

It was our Anniversary the day we came home

and let's just say it was a hard hard hard time coming home

Ty melted down, Sarah struggled all week with horrible tummy cramps

and we couldn't get home fast enough

at that point because

well, sometimes it's really really hard being on vacation!

So back to "life", school starts next week for the girls

have no idea what "will happen" with Ty

I just want him to be a in much calmer, happier, less angry state of mind!

Those major ups and major downs are really hard

both emotionally and physically and

well, I just know we are still really missing something in him

So vacation was a vacation in that we were not home

but not enough time has passed where we would say we want to go anytime soon!

Or at all,

Ever have a vacation where, well, everything was just really hard and makes you re think if the reward is enough ?

This trip, wasn't so much...

but yet we had some "nice moments" ..

ugh these are the ups and the downs of a kid with special needs,

another kid with current health issues that cause her a lot of pain and cramping and we can't get to the GI doctor soon enough

and I'm sure being "away from home" didn't help her one bit so lots of tears, lots of pain, and well, that sucks and brother is anything but sympathetic!

So yeah, lots of "mean" behavior towards her and I hate that... Brian hates that

and again tells us, boy he is off!!!

Every little thing made him explode out of no where

He was so volatile, we never knew what would set him off

and then he would retreat and lose himself into an activity like digging a hole, building the campfire, lego's, or boogie boarding

but it was always very temporary and short lived!

So, I'm ready for some relaxation, some calmness, some more predictable days!

And that is our week in review!

My one wish....

I need a vacation!

Good news is we are- yeah!

But the prep and packing and all the stuff to get ready

well, you know- sucks!

But I"m hopeful once we get to the beach, life will slowly mold into the soothing sounds of the ocean waves crashing, melt into the warmth of the sand between our toes, laughter of just being in one of the best places on earth

Well, I can dream- but it will certainly be a nice change of scenery, change of pace, and hopefully a little relaxing!

Ty said he was really looking forward to vacation because it's the first one with Gretchen

oh and we have all agreed to have a family Nerf war

It is the perfect place, but I just hope he hasn't built up what it will be like in his head, because well, he'll quickly get disappointed when everyone just wants to "have fun" and play nerf wars, rather than follow "his rules" that pretty much no one but him understands, despite the constant explanations!

Let's just say it will be interesting, and I just hope he "let's his guard down" and goes with the flow and has fun with it!

I hope!

But we usually have a good time eventually while at the beach- it's good for all of us!

Campfire from morning till night, relaxation usually at some point in the day

leisure time, beach time, kids "playing",

us playing with them, riding bikes, scooters, playing catch, basketball,

building sand castles

watching Gretchen experience the beach with us

and my only one wish is for us to all be able to go the beach together, as a family

the past few years, it was too much for Ty to be at the beach as a family- so it was either me taking him or Brian.. and we would literally switch when the girls wanted to go

it just is how it is, it's simply too much and he has behaviors... but when it's just one parent and him, it's a much better experience

so just one simple wish, to be able to walk just across the street (literally that's how far it is from camp site)

and as a family enjoy nature's wonderland together!

My one wish!

not just exisiting, but playing

A good moment going on over here

Ty and Megan playing Wii

TOGETHER!!!!

Yeah, it's been quite some time since those two have been able to even exist in the same house, breathe the same air

and here they are in the same room playing Wii

and I have yet to hear one argument or scream the others name

Pretty good moment!

My champ!

It's been a much nicer change of pace around here....

in fact, some pretty damn good moments-

from watching the movie "Mr. Mom" with Michael Keaton yesterday morning with the kids, which by the way is just funny

then watching in memory of one of my absolute favorites since the days of Mork and Mindy, Robin Williams, we watched "Mrs. Doubtfire"

and once again, lots of laughter!

In fact, the day just got better for the most part when Ty and I used a bunch of fresh veggies our neighbor had given us from his farm to make homemade chili in the crockpot

Now for some reason I have always been intimidated by making Chili, probably made it once.... don't know why- it was so easy and so delicious

everyone ate it (even Ty, despite his first negative impression and words about it, that's kind of how he is- bark first, then realizes, hmm pretty good, in fact amazing!

Then today, he came and snuggled me in bed as Brian was getting ready for work, and despite some crazy anxiety OCD stuff, he simply just sat and stared outside, obsessed with waiting for the mail...

now I used to worry about this, waiting, for hours for one particular point in the day, maybe someone coming home, or leaving, whatever

now as long as he's "not bothering" others as he typically might be in this kind of situation, well then he can stare out the windows for hours - fine by me.

The alternative wouldn't probably be a good one!

And of course I"m speaking from experience!

So, after mail came and what he was hoping for arrived, his mood shifted to joy and excitement for our camping trip to the beach coming up

And Sarah and I got to bake zucchini muffins with some of the left over zucchini from the box the neighbor gave me, and well.... cooking, baking, watching movies with the kids

I even heard Ty yesterday, when he, Megan and I were out front altogether (which in of itself is quite amazing)

But I hear Ty's sweet voice say to Megan "Megan, do you want to pet Gretchen?"

Don't know who was more shocked, Megan or myself..... but yeah that's the little boy I know is in there... That's the little boy that I will continue to help and fight with every ounce of my being, to help him when he struggles, and life gets in his way, and to continue to love him always, even when it's a hard day for him.

Because I know, even when it's tough, he truly just wants to be happy and loved-

it's nice to see him happy- and we love him unconditionally with all of our hearts..... He is a fighter, and a champ!

maybe strange but.....

You know it is a good moment when I am assigned.to be the judge for an impromptu dog show with three participants ....after he watched a fog show on Tv this agternoon Good stuff. And now another good moment as a family watching a very interesting. documentary called "Hitler's jurassic zoo" Kind of a weird doc to watch as a family....but these are the moments we take advantage of to educate....Ty is very interested in WWII ....so .....yeah ....a proud moment o lots of levels.

A friend.......

We got through the weekend... and it was by far better than the weekend before and the days before

What turned around?

Who knows, because that's just how things are....

I can take a guess?

One incident that happened thursday came full circle back to his hospital visit, once again,

and how mad he was about it, and we lie to him, he gets shots, he hates the doctor's, he's just so so so so angry!

Which PTSD sucks by the way!

He has every right to feel this way, his entire existence on this earth has been painful, full of medical tests, G tubes, bowel clean outs, invasive tests, blood tests, illness, more pain, and absolutely no way to "express" what he is feeling

that sucks!

So back to Thursday, it all came back to this in the middle of a behavior... and throwing and hitting

girls locked in their rooms safely

and finally I matched him- I matched his intensity and I gave him words to say how mad he was, how angry he is, how totally upset all of this stuff makes him

and with the mini pool stick in his hand, I told him to hit the box in front of him

hit it hard, tell it how mad you are

scream at it, hit it harder, you're so angry, you're so mad

and I just kept verbalizing the words to him

telling him it's okay- to be angry and mad and frustrated... and it's even okay to hit this box, hit the couch cushion because in reality the need to hit something for him is so high, there is no way "anything else" can replace that

and don't we all sometimes feel this way

I'm a believer in expressing the anger and frustration in a way that is healthy and not harmful to one self or others-

I tell him it's okay to his the box, it's okay to hit this couch cushion......

This is okay- (just never okay to hit others or himself, or throw things, or threaten others)

and I don't know if this was the turning point, don't know if this got out all his anger

I don't know, but that day was a turning point

in a much more positive direction..... not that life is ever easy with this kid

ever

but we certainly are finding more happy moments, more calm moments, more just breathing and existing moments

more laughing moments, much less anger and defiance and literally chaos

Thankfully

I really don't know how many more days (even just one day) we could handle what was happening- we just couldn't break the cycle, we had no idea how to help him

we honestly had no idea how to turn the situation around,

It's funny the "circle" of people who you know in person, who you know from support groups, who you know have similar experiences

I guess it's sticking together since so few "get it"

But I received a sweet note from a friend I know

who has similar situation, sort of, cause everyone really has such a unique story that even when we are similar it's still all so different

but she sent me this note that definitely provided some comfort, knowing that sometimes even when we try our hardest, it's not enough for what the need is

and whether voluntarily or not by choice, circumstances happen

and it's once again seeing how the positive comes out of that situation

even when it was completely out of our control and seems to be a horrible situation

It was helpful, so thanks friend!

Because we may have "gotten" through this period of time,

but you and I know there is always another one around the corner at some point

esp as our kids get older

It's just not the same as when they were little

so here is to thinking looking up, being a little brighter, and a little more joy in the day!

And I won't let my fear of "what's next" cast a shadow on these good moments.

Not a good feeling....

Although I hear laughter coming from the other room right now,

and he's writing a story with Daddy to occupy his time during his bowel irrigation

my heart is shattered right now.

I'm glad to hear some giggles, and silly ideas

but this day has been full of complete over the top meltdown aggressive behaviors directed toward us all

I can't help but believe in my heart of hearts, something is wrong with him!

As unpredictable as he is and can be

this even is so out of character for him, even on the worst of days!

I don't know, I don't know how to help him

I don't know what to do to "pull him out of this hole"

Everything is triggering his PTSD

every day

many times a day he will blow up and then it comes to he's afraid he has to get his button changed

that he's going to get a shot

he is so oppositional and defiant

and he is short circuiting literally the minute he isn't able to control something

and right now his need to control EVERYTHING is so high it's absolutely unattainable

I can't even explain what our family is going through right now

and trust me, we have pretty much seen it all (or so we thought)

but his behavior and aggressiveness is relentless backing down for nothing

flipping the switch in less than a millisecond

for nothing that even remotely appears sensible to us

and trust me, sometimes we can see what the trigger is

sometimes it's to be expected knowing him and his response and especially on a particular day

but whatever is going on with him right now, ever since last Thursday hospital visit

has absolutely sent him spiraling

and just when we have a moment that we feel he's breaking free

the switch is flipped once again into pure anger and physical behaviors

Just feeling so helpless

nothing we do is helpful for more than 5 minutes- and believe me we have a good bag of tricks ... and still nothing

is working

the flip is switched faster than fast and we're right back into the storm

We just don't know what to do

and that's not a good feeling :(

In fact, it's the worst feeling in the world and if there was anyway I could take this agony he is experiencing away for a second

I would!

And what is this all doing to the girls

This just sucks for them- no other words- just sucks!

We will rise above...... it's just tiring

These are the kinds of days that scare me!

Scare me to my core that we are not able to help our son!

That his team of experts, physicians, who ever are failing him, as we are as parents!

Is this all we can hope for for him!

My paradise in a bubble has been anything but the last week

his trauma that he experiences every time he goes to the hospital is so real

but his ability to cope is getting worse!

Is it because of the hospital last week? Is it because of all the meds used while at the hospital? Is it because ... is it because .... is it because/???

I just don't know and we'll always be able to ask a hunded, a thousand questions

and probably still get no answers!

But is this all we can hope for for him- just doctor's shaking their head, saying we don't know?

People saying to just "put him" somewhere?

sorry, no options?

I don't believe it- I just don't!

I know him, something is wrong with him, something is down to his core wrong!

This isn't him!

This is the expression of what he feels like on the inside, which if he were able to communicate it- he is not his behaviors! That is a symptom of what is happening!

Why is this so hard for "professionals to get" ; some do, but most do not!

What do we do???

Why does the system make things EVEN harder, why...

why can we not get him the proper care and resources and supports he NEEDs?

He was doing so well, up until last Thursday when he HAD to go to the hospital!

We need to do things different, but believe me I have no idea what that looks like!

But this blog paradise in a bubble, is one that I know, is how he is able to "be himself" to be calm enough to be the Ty we know!

And right now it is anything but that.... our days are hard- very hard!

Brian is having to come home from work because I cannot control him, I cannot calm him down, he is raging!

He is obsessed, he is controlled by his thoughts

he himself has absolutely no control over his entire being!

Yesterday was particularly hard, and today, although I wanted so badly to call Brian- I couldn't!

I hate what it does to him, I know it makes him nervous to leave the house if he feels I cannot control the situations!

And yesterday, I couldn't physically emotionally - it was a big loss for me!

Today seemed to be better, overall

it seemed he was calmer, more capable

I thought it would be fun to make pancakes!

and then his negative thinking once again got stirred up and he lashed out that "megan cannot have any"

and that is what he was sticking to the rest of the morning... why??

According to him, she was "mean" to me last night when she wouldn't type in the password for the TV!

Those are his words.... but he couldn't get passed his negative thoughts and wanted to get back at Megan!

This all scares the hell out of me!

He becomes obsessed with the thoughts that Megan is the problem!

And after yesterday, when he was really out of his mind, and body

and the girls locked themselves in their rooms as I directed them to

I'm just so F######## tired of this ...

Our every move thought is controlled by him and his behaviors inability to cope, inability to effectively communicate pretty much anything that can be helpful for us to understand what the hell is going on inside that head!

And even more so, I hate when I feel this way because he clearly has absolutely no control over himself

so what does that mean?

We just give up??

These are the days that are so incredibly draining, exhausting, and so emotionally tiring

and physically scary!

I didn't call Brian today, we ultimately sat down and ate pancakes

I did give him some Valium we have on hand in situations like these... but the only other time we've used it, which was half the dose, wasn't effective

the psychiatrist said to use 10mg

and I would say, that is still a very ineffective dose for him... it didn't calm him down, he continued to struggle, to obsess on Megan not having pancakes

Is it that everything on the inside of him that he feels is so out of touch and he is trying so hard to grasp some control of SOMETHING?????

No matter what that looks like- controlling everything else around him, controlling what his sisters can and cannot do

Controlling what happens in this house, and how everything goes from A. to B. to C?

But he can't, it doesn't fulfill the need he has because there is always something right behind it that again gives him the feeling of being out of control!

This is a damned if we do and damned if we don't situation- all the time, every waking hour, since last Thursday!

He's so dysregulated no matter what attempts we do to help him

he is so oppositional and defiant, that his need to control the situation, rather than allowing us to help him get control of himself

is just rendering us into a brick wall every time!

What are we supposed to do?

How do we get him "back" and stable?How do we do any and all of this without compromising our safety, his safety and very importantly, the girls safety?

There isn't a day that goes by that I wonder if we are making a mistake- on many different levels!

Are we totally damaging our own relationship, the girls, and our selves?

I know it's just we are tired, so so tired, I myself am feeling very defeated and unable to help him

and that is by far the most difficult and worst part of all of this! We honestly feel constantly backed into corners by "professionals" who simply throw up their own hands and say I don't know, and are left to "figure" it out at times, especially difficult times.

How is that fair to Ty?

Schools and the district have failed him and us

the medical community failed so early on, by dismissing everything that he was experiencing, his pain, his development, his difficulties to eat food, to be able to sleep without waking up crying for 3 hours in agony

and back then we always knew we would have to FIGHT, fight so hard to help him

and we did, and we got answers, for that time being

but we still don't know so much, and so much continues to make him struggle

and we need a better plan - a plan with helpful information that will guide us to better help him

Especially on these most difficult days after hospital visits

We can't help him when he's like this

but he's our son, he is only 10 years old, he lacks much of the abilities to cope, handle, and process things around him to better appropriately respond

to control his obsessive thoughts, to control his "anger" to not lash out physically, to allow us to help him

or is it time?

time and even a greater amount of patience, which I try so hard, but when it is day in and day out, it's relentless, it's taken over our family, it's never backing down

my patience is beyond thin, I've yelled, I've cried, I do feel helpless and defeated!

And that is why I have to post this, I have to put my thoughts, my own crazy negative thoughts onto paper, or computer screen

my way of processing all this "stuff"

so that when he wakes up from a nap, I again have my patience to better handle "him"

to better handle the situations that may come up

to better be able to help him because this is not his choice

there is no way in the world I believe a child "wants" to behave and feel this way about anything..

it's simply a sign of his struggles, his internal and external struggles that are probably so so so

much bigger than any of us still understand

and has been for his entire life

I just pray I have the strength to "help" him in a productive meaningful and useful way

to not let my own weaknesses cast a shadow and drive me to my own negative place that interferes with my ability to help him

that my patience is what wins every time and my understand and unconditional love will in the end help him pass through this difficult time

That my own strength will help him have the courage and strength to push himself past this difficult point

That we as a family once again become grounded, allowing ourselves to lean on each other for support and strength and not letting the difficult moments control who we are and what we know to be true to this world

To continue to fight like hell to preserve the strength we have as a family- and again allow our own inner strengths to drive this, and to guide us back to what we know about ourselves and each other- we are a strong family, we are unique, we are full of love and compassion, and we will get through this difficult time, as we always do!

But moments of weakness happen, it's about what we decide to do next that makes our Paradise in a bubble our happy place once again!

without those tears of weakness, we wouldn't be able to know the true depths of our patience and commitment to each other, to our children, and to once again rise above to fight for our son!

Just not himself........

It's Monday now.... a pretty rough weekend (to say the least) but no time for posting!

Funny thing is I actually had a fantastic afternoon on Saturday- hanging out at my dear dear friends house, her daughter who is friends with Megan, my Megan and Sarah.

It was clear Ty needed to be HOME, and needed pretty much everyone else GONE!

back to a divide and conquer sort of situation, but that's okay-

I had a nice afternoon calmer than calm which was lovely and needed, the girls had a great time with us, and Brian and Ty also had a fairly descent afternoon- Ty slept a lot, but having a quiet house

allowed him to catch up!

Ever have those days where you know something is wrong with your child, nothing you can actually pin point, but things are just so different, you feel so helpless!

This is what we are experiencing with Ty right now, something isn't right with him-

and it's so hard to say why- we are used to his challenges, we are used to tough days

but this is different, both Brian and I see it

and he just is not able to tell us anything that is going on with his body!

Is he in pain, (more pain than maybe he usually is?)

He has been complaining about his throat ever since his procedure- which we know they put a breathing tube down, for ventilation since he is under general anesthesia

and we know the pros and cons blah blah... but in 5 years, he's actually never complained about having the sore throat they talk about

and it's gotten better he says, so it's so hard to determine if that is causing him more pain than usual?

But he certainly isn't himself, and believe me, not in a good way- it makes me feel so sad for him-

We don't know what to do to help him- and he is absolutely so unhappy and miserable- everything is causing him to meltdown and become aggressive!

This morning he did come crawl into bed with me to go back to sleep

which was very nice... I love when he's sleeping- he seems (usually)

so peaceful and content!

Here is a picture of what he made for himself this morning- he said "dad didn't buy any cinnamon raisin toast

so .....

love that he improvised... and this is what he made

which he always makes about 10 x more than he actually ends up eating- so out of the 3 pieces of toast, you can see he ate almost one- and the rest is left

But this is how he is now, taking a much needed nap

I just pray that when he wakes, he feels more himself!

He even will say, he doesn't quite have his appetite back

so maybe he also recognizes something is going on, but he just isn't able to express it!

This is where functional language is soo so so so so so important

without it, behaviors will continue!

With functional and expressive language, others understand!

who cares if he knows everything about dogs, or dinosaurs, or every model of John Deere Tractors

if he hurts and can't properly tell us, or if he's sad or angry or frustrated

and no one is responding to him because WE DON"T KNOW

this is key to living is being able to express your needs and wants

and although he has WORDS

very rarely (because we are constantly working on it, and sometimes are better than others because his cup is only half full and not 3/4 full)

but very rarely is he able to say "I don't like that, I don't want to do that, please stop, please don't make that noise, that bothers me, that is frustrating me, whatever.......even when he likes something, it's not as easy as him expressing it- in fact, sometimes he over reacts negatively, because he doesn't know how to enjoy the moment of something he likes!

Communication is hard, words are easy, expressing and being understood

is hard!

Behind us for now..

Well, yesterday is finally behind us....

that was a very hard morning for Ty, to say he fought us the entire time to get to the hospital is well

an understatement....

I swear that boy's survival instinct is beyond super human!

Which I guess it has to be in order to endure the things he's had to in his life!

But man, certainly makes things very hard for us- thankfully the hospital surgery center staff know us and him so well, so when I call them at the time we are supposed to be there

to let them know we are having a very difficult time getting him there- and we are still home

well, to have others be patient and empathetic is just nice!

We are already pretty stressed at this point- because when Ty doesn't want to do something....

and especially going to the hospital.. to him it's like "bring it on"

And for some reason, tells you how different each day can be for him,

our usual pre med regimen that we have been doing for the last 4 visits and has worked

never had an impact on him

and if it did, it tells you how "heightened" his survival instinct was

holy that was so hard!

but I know I say this a lot, Brian and I

we make an awesome team

someone needs to make up 2 superhero characters who are an awesome badass team

and not that we are fighting or taking out bad guys

Nope, we are a superhero team of love, compassion, patience and advocacy for our son (and all our kids)

But especially in a situation like we had yesterday morning, Ty hid himself under Sarah's bed

and damn that kid new exactly where to wedge himself- under a bed, that is not easily accessible except through a tiny hole

and Brian and I put on our capes, I counted to 3 and lifted the bed

while Brian gently pulled Ty out from under

we know he is scared, that is the only reason he is fighting, he doesn't really want to hurt us- but that survival instinct doesn't allow him to think, to rationalize, to help him stay calm..

nope, it puts him in complete fight or flight- and he was trying his hardest to do both

but once again our dynamic duo of Mr. and Mrs. took the situation over, kept our boy safe, kept ourselves safe and got us (somehow) to the hospital

It was certainly not an easy feat... but we did it!

But it breaks our heart every single time to see hims struggle like that, to know how scared and afraid he really is

and with good reason,

the boy has been through so much in his short 10 years on this Earth

and unfortunately it just doesn't seem to ever get easier for him!

But in the end, it was all successful, he is cleaned out for the next 6-8 months and I know he feels better!

So, we'll move on, that day is now behind us, and I hope he can get focused on something positive today

and allow us to be a part of it!

And if not today, maybe tomorrow... we'll be patient.