On being forged into a warrior mom
If I could summarize our journey from Hell to HOPEISM, it would be in my faith, which I call HOPEISM. It has been my weapon of choice to get me through each battle I have had to fight in my mission to win our war called life with autism and seizures. Vaccine injury to be more specific. It would also be in committing to heart, soul, & mind the words and motto's from Forged, NDCQ, the Lone Survivor, and Levi Lusko in his book, "Through the Eyes of a Lion." I will be forever grateful to the inspiration, encouragement, and mental fortitude found through all of them collectively. Because of that, I am not allowing this tragedy of vaccine injury that has come into our lives to be an obstacle to being used by God. I am instead turning it into an opportunity to be used like never before!
This blog is dedicated to Brandon. His life has been forged by difficulty, obstacles, & all too often because of seizures - pain, blood, broken teeth, & broken bones. Yet through all that he has shown such fortitude. The bravery, strength, & resilience of a true warrior. He taught me that having strength through adversity means that even if you lose every battle, like the Lone Survivor, you never quit fighting until you win the war. That in the words of "NDCQ," you keep "dreaming," keep "daring," & keep "doing." As Team Guppy has yet to be able to escape vaccine injury, we have no choice but to as Levi Lusko writes, "Run toward the Roar." God has indeed given us such incredible power in enduring such impossible pain.
Some days the HOPEISM in that simply takes my breath away.
August 23, 2018
Celebrating one year of being a part of this Treasure.
Of pure JOY.
One year ago after so many months of being without a program for our son, a friend who is the director of JOYful Learning Center invited Brandon to be a part of their program.
Countless other Day Programs turned him down.
One invited him.
I cannot tell you the dismay at going from center to center bringing my son for an "interview" to see if he was worthy of their time and effort.
To see if his needs were minimal enough for them to serve.
To see if his funding that comes with him for such a day program was enough reimbursement for them to hire additional help.
Most often, that answer was no.
I can't describe the mind-boggling sense of worthlessness one is made to feel in this situation.
To bring your child, one you well know how difficult can be, to some strange place to be evaluated as to if he's worth serving or not.
And that's essentially what it comes down to.
Does he pay enough to make it worth hiring extra help?
Are his needs too much for us to mess with?
Each interview at each place more deflating than the next.
Within the first few seconds of arriving at most centers, I could see that we weren't going to work out.
I mean, the first place had motion sensor front doors.
Wandering risks for most like my son!!!!!!!!
How much easier could it be for them to escape???
Other places only served the high functioning who could with minimal assistance care for themselves, allowing for a high caregiver:client ratio.
Brandon is pretty much the definition of 1:1.
Other places, when you walk in and see a giant screen TV with multiple remote stations, you know only the high-functioning Asperger's are welcome there.
Brandon's only interaction with a TV is to stand in front of it and block your view from watching it.
One place we visited it was clear they would take you if all they had to do was cram your wheelchair in a room and call it "computer time". Brandon could not even walk from one end of the room to the other without touching someone it was that packed.
No one was using any computer.
One place that we had high hopes for, we made it all the way to the back to actually get to the point of filling out forms for his funding - all Brandon had to do was sit on the couch. We were within a hair of seeming like we would be welcome...
Then he got irritated at needing to sit still and started rearranging their papers and things...
Anything within reach.
I needed to leave before he escalated further and asked if I could mail the papers when I was done.
They said, "Sure, no problem, thank you for coming in!"
Yeah, I sent the forms in and have not ever heard back from them.
So is the dismal outlook of the canaries who took one for the herd.
The multitude maimed by the mandates of vaccinations....
Those not gone, left to be totally forgotten.
Brandon, like thousands like him, are those who fit no mold. They can't be expected to sit in front of a TV to entertain themselves. They can't be left alone for one minute. They don't sit for endless hours. In fact, they don't sit at all.
That pretty much excludes them from any program I had visited.
On August 24, 2017, Brandon was welcomed at Treasures of JOY.
An adult day program run by a Christian woman who has her own personal stake in this community.
My HOPEISM was again rekindled in at least this aspect of our journey in "Life with Autism, Seizures, and a side of PANDAS."
She knew Brandon's good, bad, and ugly - and accepted him.
The transition to this place easier than most have it. It's hard to trust. But easier when you personally know the person running the program. I mean, Joyce knows my good, bad, and ugly and how I'd hunt her down if someone abused my son!
Where Brandon came from was a strict ABA center. It served him well for many years. But as an adult there comes a time when they need more. Brandon was Brandon. Some things in that no amount of ABA would change and to continually try to force that ends up being more harm than good.
That's where we found ourselves.
Most of these ABA centers have to follow a strict clinical protocol with little room for freedom.
And after all his life in the constraints of ABA - he needed more.
He needed the balance an insurance funded ABA program simply did not allow for.
Once again in this life, we were between a rock and a hard place.
I needed Brandon to have fun, have some freedoms.
I didn't want to always be told that he bit his hands 600 times in a day.
I know why he was.
He was frustrated.
He needed a place where I could be told how often he smiled in a day.
Because he was actually enjoying his day.
The words "Thankful" and "Grateful" will never be enough for what Treasures of JOY, the Director, the staff, even the myriad of other clients - have brought to our lives.
That there is a mixture of all ability levels. Verbal, non-verbal, high-functioning, and totally dependent.
It is nice to walk in (late as always) and have a client greet Brandon by saying, "Good morning Brandon" knowing full well that Brandon will walk right past him and not even acknowledge him.
I've laughed so hard at when a client would attempt to talk to Brandon and the caregiver would remind her that Brandon doesn't talk and she say, "Yeah, I know Brandon...".
Those things mean the world to me...
That Brandon is in a setting where peers know him, and love him anyway!
To know how difficult and trying my son can be, how challenging to care for in the most menial of ways, and yet how the staff still care, still smile, don't quit.........
To have become friends with them, to feel like family with them......
Those are the rare, priceless treasures we seek for our children.
Yet there are so few places like this one.
Is it a perfect place for those like Brandon?
Our adults need more than what their funds will allow for.
His center does the best they can - but they need more.
More volunteers to be able to take community trips.
More funding to hire more staff.
Each day I take Brandon there I am humbled to even be able to take him there.
I am beyond thrilled that such a place exists for him and that his funding pays for it.
But at the same time I am saddened by how much better this program could be if they could have the funding they need, the volunteers they need, the many more locations they need!
If you are someone who can die in peace, never having to worry about what will happen to your grown children after you die, please consider donating to this program who helps those of us who do nothing but worry about that ---
This program that gives us HOPEISM for the now - in that at least for a few precious hours each day our care giving burden is lifted and our adult loved one is safe and well cared for....
Treasures of JOY
Please, donate at the link above...
Thank you Joyce...
Thank you Trish, Jayson, Sydni, ----
Everyone who cares for the precious adults with disabilities or special needs at Treasures of JOY.
August 20, 2018
A testimonial from Team Guppy...
For Autism Rescue Angels
Todd & I have been married for 30 years. For the 24 years of that time that we've had autism in our marriage, I can count on one hand the number of times we've been able to go on a vacation together. A real vacation, one out of our state for a week, a whole entire week, doing something extravagant (to us at least)...
When asked to share what receiving funds from Autism Rescue Angels has meant to us - I thought about that...
And the floodgates of all that our "Life with Autism, Seizures, and a side of PANDAS" has taken away from Brandon, from us as his parents, from us as husband and wife, from his typical brother, and from us as a family unit - came gushing out in tears.
I thought about the endless sacrifices.
It seems that is all we do...sacrifice something.
It's hard to paint a picture with words of both the depth of hardship of this journey and the height of thankfulness for the help received along the journey.
The need, so great.
The help, so sparse.
I guess for me I could describe it in terms of this stage of "Life with Autism, Seizures, and a side of PANDAS" we personally are in...
Where infinite need collides with finite resources.
Where once we had the ability to spend as much as we could - and more - to do anything and everything to help our son recover or at least be out of pain and somewhat independent; we are having to face that we aren't there yet. Such a long way yet to go. But no more money to spend in attempting to get there. It's incomprehensible how little support there is. We have all the insurance in the world, but none of it covers what he needs. Everything that has helped him and that does help him, out of pocket. So many promising things to try, but no funds to try them with as we must shift gears in plan for how to pay his constant needs once we are no longer living to provide them.
It's a horrific place to be.
A sucker-punch that for this past year I've not quite caught my breath from.
Now, more than ever, it will take a village.
A village of those willing to help in whatever way they can - the need for respite, so great.
The need for donations, even greater.
As an adult - allow me to describe his situation in this way. Our son is essentially a homeless person. We have given a vow to love and protect and advocate for him as his guardians - but with that comes no financial help to do so.
We are the only village Brandon has.
Let that sink in.
He cannot care for himself, work, or live independently.
His needs and care are too great for just us.
He needs a village.
He needs many people helping in whatever way they can, and what is most needed, is donations.
The times we have received help for Brandon's financial needs - have been the times we've seen HOPEISM shining the brightest.
It's when we've felt the love of a village.
People donating to Autism Rescue Angels and saying "I want to be part of someone's village" --
That you want to be someone's HOPEISM.
And in a journey where you feel nothing but all alone and isolated....
It is a life raft to receive such HOPEISM in the form of a grant.
Something tangible that says, "We care."
We can't take the burden away, but we can lighten it in this way.
There just aren't adequate words to describe the love felt in that.
Thank you, everyone, who donates to Autism Rescue Angels.
Thank you for being a part of our village in this way.
August 8, 2018
I suppose because I share so openly it is known that my son has suffered from so many seizures for so long, and so when a rookie parent is just beginning the journey, they are sometimes given my name to contact for support...
I sit here and chuckle at that, because the running joke in our home is that I should never, ever, be allowed to answer a suicide hotline. I am way to literal to have the social grace of, well, grace. Or maybe it's because I'm way too deep in "Life with Autism, Seizures, and a side of PANDAS" to have sympathy for the normal stressers of typical people who have the luxury of living a typical life with all the typical twists and turns that I would exchange them for in a heartbeat.
To me, if you aren't a warrior parent or deployed fighting a war, or are a combat veteran, you have nothing to whine about. I know that is a very insensitive thing to say, perhaps I should instead say, "Come live in my house and care for my son for a year so I can catch up on all the breaks, clocking out from work, sleep, weekends, holidays, and vacations I've missed out on over the years and then you can whine about anything you want to."
(those of you who think measles is worse than autism, please be first in line)
But for those in this life I have found myself in, with all these seizures as one of many a-la-carte's to autism - I wish I did have some magic words of comfort to make it all better.
But I don't.
My son has had seizure upon seizure upon seizure.
We've had days, weeks, months, and years of seizures.
We've had absence seizures, atonic seizures, myoclonic seizures, petit-mal seizures, but mostly the grand-daddy of all seizures in grand-mal seizures.
There have been thousands of seizures since our first seizure, and yet each seizure is like the first seizure.
The feeling and response from the very first seizure will never go away.
You will never get so used to it where it doesn't affect you.
Now maybe like me you will learn to cope with it better, but you will never get used to it.
At least I hope not.
Because while you can numb your response with alcohol or drugs I suppose, if you truly become numb to it I think that would make one a bit less human. That your child has all those seizures, a bit more normal...
And it is far from "normal" how this world is trying to desensitize us to the horrific tragedy that has been done to our children.
And it is even farther from "normal" that an entire generation of children have been so maimed that they have these debilitating disorders - seizures merely one of them.
Part of me feels that's a major thing wrong with society today.
It's become numb to injustice.
Numb to what has happened to an entire generation of children.
The enormity of wrong has numbed the desire to make things right again.
I suppose that's why I can't tell someone else how to not be affected, because I have learned that while each seizure chips yet another piece of my heart and my soul, at least I know I am not numbed.
If I can still feel the pain of it, I can still fight it.
And if I have that desire to fight it, I am still alive.
I haven't become a defeated victim of it.
One of the things that make me laugh hysterically, is when I see a post from a typical person living a typical life that goes somewhat like this:
"We've just completed our remodel, certificate, project, -whatever- and life is so good!"
"We just went on our dream vacation -- God is so good!"
I can literally feel insanity setting in when I read those things.
I always use too many words when only a few would do - and in this case I suppose - if I were to be asked how I cope with it all - it would be that I have found a place - a HOPEISM - where I can say that life is good even when it's not, and that God is always good even when my situation is not.
It is, literally, as simple as that for me.
If life is only good for you when everything is going your way, you won't be able to cope. That is a shallow existence and you will not survive.
If your faith is in a god or religion that only shines in the light and not in the darkness, then you are in for great disappointment.
I think that's why I love storms so much.
Those dark, thundery, rainy days.
Anyone can be warmed by the sun when it's shining. But only those who have true faith, true HOPEISM, can see the sun through the darkness. Can feel the warmth of a perfect summer day while hunkered-down in the depth and barrenness of winter. Can feel the presence of God in the isolation of a bottomless pit.
And our seizures seem to be that.
A never-ending bottomless pit.
I can't tell you how to get to that place of seeing light through the darkness. I can only share how Team Guppy has. Thanks to our Navy-son - we have embraced a mental attitude found in the words NDCQ. That we are not dead and we can't quit. In the words of heroic military men and women who in battle against all odds have had no choice but to Never Quit. In phrases like "Strength through Adversity" that is the Forged motto.
In the motto of NDCQ that when life is tough, BE TOUGHER.
And for me personally, from forging a faith in HOPEISM. In God. The one constant in a life of inconsistent. The calm in my crazy. The sane in my insanity. HOPEISM is my faith in God. I have described my HOPEISM in many ways over the years, but recently I have found it described most perfectly in the book, "Through the Eyes of a Lion" by Levi Lusko.
He describes hope (he meant HOPEISM) in this way:
...to have HOPEISM is to believe that something good is going to happen. That help is on the way. That it's not over yet, and no matter how dark it seems, there's going to be light at the end of the tunnel. HOPEISM is a confident expectation. A joyful anticipation. An active, dynamic, energizing enthusiasm. When you have HOPEISM, gale-force winds can blow and tsunami waves can smash into the hull of your life, but you are buoyed by the belief that the best is yet to come, that brighter days are ahead. HOPEISM quietly tells your heart that all is not lost, even as storms rage.
Do I act out that kind of HOPEISM every day? No. Some days my HOPEISM is barely a whisper, and that's ok. Do I sometimes stand at the edge of that cliff and dare myself to jump? Wish someone would come behind me and push me? You bet.
When I wake up to the sound of my son choking and gasping for air or hear him crash into a wall and see that his head has yet again knocked yet another hole in yet another wall - I want to just die. I scream, I cry, and I curse, and I beg for God to take my son so that he does not have to suffer seizures any longer.
There was even a time I told God to go to hell.
And I meant it.
But those things are flesh.
Our flesh is weak and temporary.
I have learned to rely on my will, which thanks to HOPEISM in God, is strong, and eternal.
I have learned to not fear the roar of any lion (hardship, autism, seizures, whatever) but to run toward it.
I have learned in recent "lion" books that we must live a fearless life.
Be lion chasers.
Don't fear being "In a Pit with A Lion on a Snowy Day"- but instead be a Benaiah who came out victorious from being in that pit with that lion on that snowy day!
That's the advice I would give a new mom having to hold her seizing child while they tremble violently, choke, and gasp for air.
That's the advice I would give to a new mom on this journey through hell...
To keep your eyes fixed on HOPEISM.
To know that God is good even when prayers aren't answered.
That life is good even when your situations aren't.
That it's always darkest right before it becomes pitch black.
Ok, so maybe that sentence doesn't belong...
But it proves that laughter will be your best medicine in this journey from hell to HOPEISM.