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.