Wow... last post was December 2014.... so much has happened, so much has changed, so much of everything!
Not sure where to begin, except clearly I felt compelled to post today
One week ago today was a dreaded day
One week ago today we had to do something as parents that we should NEVER have to do
and yet even after we did, the system , medical establishment, completely failed my boy once again
Brian is back to work for the first time today, planning to stay a full work day- for the first time in 10 days, I think?
We've lost track of days, of weeks, of hours,
literally living moment to moment, minute by minute at times, not knowing what will happen next?
But last Thursday, the day we always anticipated and knew would come
because our sweet boy who struggles so much is only bigger and stronger and when he himself is unable to control his mind, his body, his entire being
even with me and Brian together it's hard!
And things had just been continuing, almost a silent cry from our boy for help- almost as if he understands he's out of control, and yet words as usually are escaping him
nothing is bringing peace or comfort to him
He has actually told us "everything is bugging me"
"except the dogs"
and that pretty much sums it up ..... but it's affecting his sleep, his eating, his ability to stay focused on anything, his ability to tolerate others around him, his thoughts controlled by severe rigidity and obsessive thinking
our bag of tools
EMPTY
phone calls made, doctor's called, desperate for appointments, desperate to have others help
just desperate
there is nothing harder then seeing your sweet boy become so desperate himself he has lost his spirit, his joy, and is being robbed right before our eyes of everything that he is made of
In a moment of clarity last week, he told me during a breakdown
"I don't mean to hurt you, I love you"
I know my sweet boy- I know
but his fear of everything, his trauma from everything, has taken hold and won't loosen up
Not since his last hospital visit in May where unfortunately he needed to stay for 36 hours over night due to complications with bowel disimpaction surgery
he got pneumonia
and things have not been the same since
despite efforts great and small by my wonderful love through this journey of parenting
so what did we have to do last Thursday that was so dreaded, so terrifying, so unknown to us
three numbers
9-1-1
it was emotionally devastating, scary, so many thoughts and so many unknowns of how this will play out!
It wasn't the behavior just prior to calling was so outrageous, it was it's been so outrageous and scary for weeks now, and nothing we do is helping, nothing we do is calming him down to the point he can breathe and relax even for a moment
how do we continue with this?
and our medical system is not equipped to handle my sweet boy...... this was eye opening to say the least!
As we've always known, his medical condition along with his Autism and neurological mental health issues have put him in a category that every professional threw their hands in the air and said "I don't know"
what do we do with that?
Are we really super human parents? That we've been navigating this world of ours by ourselves for the most part despite all the criticism, the shame, the blame, and continued lack of PROPER support -
we live this 24/7
365 days a year
and do our best to enjoy our moments that our good and recognize difficult one's will pass
and when it's not, and we feel we are unable to keep ourselves safe and our boy safe
we get backs turned, and even the best medical establishments saying "not sure, call 911"... as if that's the only answer
we're trying to get a path in place and calling 911, we have found out is either still a deadend
or simply a holding tank!
This is just devastating to us- we usually can see some glimmer of light, hope knowing these events of trouble will pass
but for the first time, that's not happening
After all, trauma from his last hospital stay, continued routine changes just because that's life - school got out, his birthday, 4th of july, daddy's birthday
these are difficult and challenging events under the BEST of circumstances
but to throw in a recent hospital stay, puberty-
oh yes, puberty in an 11 year old boy
nothing you can actually prepare for even with best of circumstances
let alone, a child, with special needs, with anger issues, with no ability to communicate properly his wants, needs, and how he feels and most importantly- coping skills!!!!
He's growing, he's changing, he's becoming a young man right before our eyes
does this have anything to do with what's going on?
How can it not?
But it only complicates our already difficult situation, despite our best efforts
And now to find out "the system" is not able, not equipped, doesn't know how to properly support and help our child
sad!
We actually had quite a good "run" as we call it- full of firsts, full of smiles and joy, full of really good times from January till May, when he needed to go to the hospital
It was amazing, it was fulfilling as a parent to see for the first time IN A LONG TIME
whatever we were doing
seem to be working, seem to help him, seem to allow our family some time to breathe, even if for only a few moments!
I didn't want it to end!
Why would I... I was able to see my child truly happy, engaging, wanting more from life
How awesome is that???
And then in a blink of an eye, among the storm of trauma and medical necessities
it begins to be swallowed up like a deep black hole
that we know is always there, always just outside waiting to take opportunity
despite our great efforts
and it not only was outside waiting for him , it's found it's way inside, into our home
into our boy's mind
robbing him of all the things he loved and enjoyed
taking over and not allowing even moments of peace for him
I've spent hours upon hours on the phone, trying to get a path set in place without causing more trauma and harm to his already very fragile soul
But we weren't safe, the girls weren't safe, he wasn't safe
we knew this day would come, we knew something would cause him to fall over the edge and not be able to climb out of the hold, even with all of our tools, and let me tell you- we have a lot!!!
I was shaking as I held the phone.
A beautiful friend came and picked up littlest, oldest was already out of the house doing what she loves so dearly- theater
things were "in place"
as he ran and climbed on top of the backyard shed, hiding, scared, never crying, but so scared he cannot make any good decisions and doesn't understand anything that's going on around him or within him
his only reaction is to escape
to get away from what he perceives as a threat
and it's so hard, but everything including mommy an daddy are threats
nothing has been calming him down, nothing can take his fear, his pain, his incredible sadness and anger away
And in that moment, we are only making it worse for him
I literally breathe, my hand is shaking, my voice is quivering, I hear a voice on the other end "9-1-1 what is your emergency?"
My son
he has Autism, ADHD, OCD, PTSD, medical issues with a cecostomy external to his colon......
I am hoping everything I am saying is right, is helpful to have them understand we ar dealing with a very scared little boy despite his very aggressive nature at this moment
I tell the operator , he is having a behavioral psychiatric crisis and we are out of options
she asks me a lot of questions, good questions, questions that I feel will only help them make good choices to better help him despite his threatening words and actions
he's only 11 physically
and maybe 5-6 developmentally at best in this moment
and scared.
The police were really wonderful, they wanted to help him and not make things worse
Many of my fears of this day were relieved at how helpful they were in those moments, those 3 hours
but like everything lately, he calmed down, those difficult dangerous moments passed, and they didn't want to take him to ER since he was calm appearing and not in danger of himself or others
we understand, even a little bit of me was relieved
but this is the pattern, his inability to control himself, control his anger, to not explode over EVERYTHING
to not put us or himself in harms way- it's just temporary , something will upset him to the point of exploding and throwing something
and as much as we know him, what that something will be
what it will look like as to anticipate the next major meltdown, explosion of anger and fear
We have no idea?
So one week later- many explosive episodes later, more days of Brian being off work so as he and I can manage Ty together
keep girls safe, keep Ty safe
try to keep him focused on positive things, distract when the negative begins to take over, to have a very intense sensory diet, to help calm his literally overstimulated, overwhelmed, nervous system that is failing him at every moment of the day right now
This is why eating, sleeping, regulating his core, using his language, controlling his fears and anger, inability to engage with his family, to bearly engage with his beloved dog friends, inability to filter, to keep out all the things that "bother him" lights, sounds, smells, negative thoughts, negative feelings, keeping his obsessive thoughts from controlling him,
he is in absolute crisis, absolute nervous system shut down, absolute inability to exist in this current state that his body is in
and once again, we are just doing the best we can
with a system that has turned him away (literally- the only peds psych hospital in the region said they cannot take him due to his medical needs
there is not hospital in the region that can help both his medical and psychiatric needs
911 is only option, and yet that is truly a temporary holding tank because they don't know what to do with him next... I don't want to wait in a hospital ER while decision makers try to figure out what to do.... this only makes things worse for him- it is not helping him in the mean time......
but it is our only option- and we just hope and pray that when we get to the ER at some point.. it's not an extended stay... and we know he won't be able to stay in the local region area
he'll be sent hours away
and what will this look like?
How will we manage our family unit with our sweet boy so far away?
And as scary as this all is...... we're prepared for it (well as much as you can be)
and yet today
Brian is off at work, Ty woke up calmer, so far so good
can't help but wonder is it anything we've done, how can we maintain his calmness?
And my deep understanding that this is nothing we've done, this is all within him, even out of his control
we are not doing anything different today that we've done other days over the past several months
it's just a morning so far where his negative obsessions didn't take over and cause him to lash out
it's a morning that he was content with what is available to him
it's a morning that his being has allowed him to just breathe, eat his morning bagel, snuggle the dogs and be here
I wish there was a magic wand to help him, to calm him when he's so scared and out of control, but even our emergency meds we have on hand for such cases, was ineffective
there is not magic anything, except not giving up. That's all we can do
and I just pray that this if the first morning of many that bring calmness and smiles back to our boy, and to our family. Because in our reality, it's the smallest of things that we find joy in, the smallest of what life has to offer that shows us there is so much more meaning to life then anything external to us... and to keep our eyes and our heart open so that we don't miss it. Not even once! This is the gift that our sweet boy has taught us over these 11 years.... and it's pretty amazing, when we see it.
