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
A Priceless Treasure Indeed...
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.