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!