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!
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