I was recently asked this question by a complete stranger to me:
How have you and your family been affected by the coronavirus situation?
I was going to do a quick answer for them, then thought no. I'll answer it, but in my open, honest, raw, real, completely transparent way.
I think what hit me hardest about the question, was that it was a perfect stranger to me who even asked it.
Through this whole "COVID-Quarantine-Quandry" we've been in - not one family member, church member, typical friend, or worse enemy has initiated any call, e-mail, text, or smoke signal asking that question.... Sadly that is the same story I hear from the hundreds of fellow warriors I hear from. Outside my warrior-friend community, with a few family member & long-time friend exceptions, I can't even think of a time anyone even checked on us. Certainly not any state agency asking what those like me need!
During our quarantine - we have been blessed by a few respite opportunities. For that we are Thankful, Grateful, & Blessed. The trifecta of Grandparents came so we could sneak to the beach for several days in March. We had one respite evening at church because I sent an e-mail begging for help. We have had a few other opportunities for Todd & I to at least go for a short walk and quick bite of dinner together because of a fellow warrior giving me the name of a guy who might be brave enough to care for Brandon! So far he has been brave enough and we have been Thankful, Grateful, & Blessed by him and the time he allows us to go, be, do.
It's just unfortunate that the freedom of those rare opportunities is not able to be stored for use during the endless other times of no break.
Outside of that, and the Saturday respite we had through "Brandon's Bunkhouse" - we've been pretty much on our own.
I do realize that many do not even have those few reprieves we've had...
Which is why I wanted to answer that man's question with raw reality....
The reality that far too many face, and that few to none realize they're facing.
As always, it is a risk to be raw and real.
I have had Adult Protective Services called on me for sharing the raw reality of what vaccine injury did to our son.
I've had people question my sanity and think they needed to be called because I'm in danger of doing something dangerous because surely no one could survive such horrific images and not "Do a Dorothy to their Alex".
If you don't understand that reference in italics, be thankful.
I wish I didn't.
But I assure you, I am no Dorothy.
Brandon will never be an Alex.
So before I proceed further, my disclaimer is that I am sorry if the truth of the video at the end is disturbing. I assure you that as my son's parent, guardian, advocate - I very much believe that he would share his hell if he could. I believe he would want the truth of his life to be told. And so I will tell it, no matter what the risk.
My disclaimer is that while I share the raw reality and the challenging darkness it envelopes us with, the light of HOPEISM within us pierces that darkness. Faith sustains us when solitude suffocates us. Brandon is my Beninah. He has taught me that I can survive being in a pit with a lion in a snowy day. He has taught me to "Run to the Roar". He has been my personal #NDCQ challenge coin. About the only positive thing I can truly say while holding back a flood of tears in typing it, is that I have never admired my son so much. As maddening as this time has been for me, it is he who has had to endure even more hardship.
He has taught me how to 'just keep marching' on our neverending journey from hell to HOPEISM.
Perhaps that is the simple answer to that man's question.
We survive anything we must, because we have no choice.
That has been the most heartbreaking thing about how we, "Team Guppy", have been affected by the coronavirus situation...
Realizing how all alone we truly are.
Realizing how little our son's life, our life, our marriage, our anything matters to anyone else.
I am not a person that gets down or depressed.
But the picture above that I took of Brandon during one of many endless days of quarantine, pretty much sums up what it must be like for him, and what it feels like for me.
I've been worn down to weariness.
I think more than any other difficulty, challenge, grueling obstacle in all this - because my heart has been truly broken.
When the corona-craziness began and we were in the Hunger Games scavenging for toilet-paper, at least Brandon still had his day program to go to. Life was still manageable. I could go searching for supplies and doing what I need to do in the course of a day.
Then the Day Habilitation Program closed abruptly - Group Homes could no longer transport clients to the programs, so for many, the day program staff had to go to the Group Homes. Which meant that for parents like me who care for their loved ones in the home, there was no extra staff to still operate at the Day Program. Which meant that the only "respite" we received, and the only "habilitation" Brandon received, was shut down.
I still cannot put into words the sucker-punch of that.
I was told it was only temporary.
Was given a date of reopening, and so that gave me a goal, something to look forward to.
The heartbreak came when after that "goal post" was moved three times - I realized we were truly alone.
The claustrophobia of that sent me into a panic attack.
It sent my husband to the emergency room for high blood pressure.
For someone as severely affected by "Life with Autism, Seizures, & a side of PANDAS" - the quarantine and shutting down of the only help we had isn't a matter of an opportunity for quality family time at home or doing projects or hanging out.
Brandon's behavior has declined the last couple years because of PANDAS and the total lack of medical care available for him in the way we can afford.
I cannot simply "take him with me" to exercise, to the park, to a friends house, anywhere.
I never know when something will set off a flare that causes him such pain he can do nothing but scream and bite and hit and run. There is no way I could ever handle him outside our home if something like that happens.
So we have been stuck in solitude.
Our only break from him closed down.
His only break from his prison in being able to go to his program, see his peers, have fresh wind and fresh fire in dedicated caregivers caring for him, - closed down.
The realization of that is something that has taken my breath away, and frankly I've not been able to breathe deeply since.
Calling my Texas Representative has been fruitless.
They have had issues trying to figure out who to contact about this situation for us, which is inexcusable.
The number of "me's" and "Brandon's" out there is staggering.
And no one even knows who to contact to share our struggles.
There has been absolutely no communication to us as parents from those agencies set up to help us.
No survey about our needs through this, who we can contact through this, how we can be a part of the decision-making process in the re-opening of this.
Nothing.
It has been endless days of nothing.
To add insult to injury, for the first time in forever for my husband's career - he has been given the opportunity to work from home in a new position with his company.
Finally - he can enjoy his house in peace.
Brandon had his Day Program to go to during the day, and Todd could work from home, and when his schedule allowed, he and I could go have lunch together.
In our world, it was as perfect a world as we could hope for, at least during the day.
That perfect for us world barely started when the Day Program ended.
Yet another sucker-punch.
Perhaps the ultimate one that broke my heart.
More for what that meant for him, than me. So much I cannot give him that he deserves because of the demands of Brandon, but at least I was so happy for him that while he has to still work, it could be in the peace and quiet of his own house. For him to have finally been blessed with the opportunity to work from home - only to have to go to work to even be able to work because of Brandon now home every day all day - it is cruel.
My broken heart now shattered in a million pieces for what that meant for him.
I was told by my DSA, that I could hire an attendant care for Brandon in our home.
That's not what we need.
We need time in our home to enjoy our home.
My husband needs to be able to work from home. Which means Brandon needs that attendant care outside the home.
Why?
Why are there no choices for families like ours?
Brandon needs a place to go to.
We need a place for him to go to!
As much as we need a break from Brandon, Brandon needs a break from being eternally in his home!
I need to be able to do things I need to do in our home. This picture below is of what happens when I try to mow the yard with Brandon home. Sweep the floor. Mop the floor. He gets over-stimulated by those things. Then when I stop, he goes in full melt-down where he bites himself. Pinches himself. Screams endlessly.
How does having an attendant care provider in my home, solve that issue?
Those like Brandon need a place to go. Need some way to keep their services when their parents need them most. We cannot just yank away the only help parents like me get!
As hideous as it seems to say out loud, I am jealous of the parents who are in the opposite situation I am in. It seems either you are like me who have had your only break from caregiving taken from you for months in the closing of the Day Programs - or you are a parent of a loved one in a group home and you haven't been able to see your loved one for months.
What I would give to miss my son!
What they would give to see their loved one!!!!!!
It is cruelty, that is the only word I can come up with to describe what coronavirus has done to me, to my son, to my marriage.
It takes all I have to get through each endless day, evening, night.
Even if it happens to be a fairly calm day, my adrenals are stuck in high-gear, I am unable to down-shift and relax. I know all too well what the next moment can bring in terms of his behaviors, his screaming, his constant need for supervision.
My son isn't someone who can entertain himself with video games, television, or anything. If I'm not looking, he's climbing something he shouldn't. If I'm not on guard, he could have a seizure, fall, and split open something, yet again.
It is cruelty to expect a mortal human to function as if they are superhuman, and that is what this has done to many of us. It has made us have no choice but to bear the unbearable with no breaks.
My husband comes home from work, and all I can do is run out the door. I spend the first 2 miles walking just trying to calm my nerves from the stress of the day. Everything in a day I need to do, errands, exercise, have a moment to myself, must be done in those few fleeting hours that I am able to flee.
Operating in shifts, we don't even eat dinner together hardly, where before, at least we had that time.
I get home after 8pm - then if Todd isn't too tired after working all day, cooking for himself, caring for Brandon while I'm gone - he goes to exercise.
Then it's time for bed to wake up and do it all again.
We barely get to talk, we are ships passing in the night and the guilt of that is crushingly cruel.
I would love to stay home and see him in the evening, cook, at least be in the same house at the same time.
But to survive, I have to escape Brandon. His noise, his demands, him.
To survive I must stay healthy, I have to exercise, I have to get out.
How?
How do you do all that when the only help that at least allowed you to do some of that, has been taken?
And for how much longer?
How much longer must we be 24/7 caregivers with no consistent opportunities for freedom for our son and respite for us?
Day, evening, night, weekday, weekend -- it is all one endless blur.
My heart has been broken by that.
Physically broken, I can feel it. I feel the crushing cruelty every day. The suffocating thought of what if his Day Program never opens?
I mean, we are #80,314 on the state waiting list for a group home - even if I decide I cannot do this any longer and need to find him a group home isn't an option any time soon!
And even if I could get him in one, do I want the risk that someone can just cut me off from checking on the well being of my son at whim? For however long they feel like it?
I don't think I could risk that.
And that is cruelty at its cruelist.
As I said, I cannot find another word to describe what it has been like since March.
Cruel.
When?
When do we get a say? A choice?
We are married, yet for the most part have been made to live as if we are single.
When you have someone as profoundly affected by "Life with Autism, Seizures, & a side of PANDAS" and you have had the only help taken from you - you have no choice but live life and your marriage around that huge elephant in the room. Constant interruptions, constant distractions, constant needs to attend to. By the time you have done all that - there is nothing left for anyone else.
That is the cruel reality of what this time has been for me.
I love my husband with all my heart, soul, & mind. He deserves so much more than I have had the strength to give lately because of all this. I cry myself to sleep from the cruelty of that. It's like to survive caring for Brandon with no "return to Day Program" date in sight, I have to shut out everything else. I guess I'm too old to multi-task anymore! I don't know. I just don't know. This has thrown a definite curve-ball in our already over-PTSD'd regular chaotic lives.
To go exercise and be totally by myself sometimes causes me more stress because I feel so selfish.
I laugh at the insanity of that. Feeling selfish during months of 24/7 caregiving, in taking a few moments of doing something for myself.
But if I don't get out, get away, I know physically, mentally, emotionally that there's no way I'll survive. My health will decline, I won't have the stamina to care for my son, (or lift him from seizures!), I will be no good to anyone.
I can share how I am doing through all this....
But Brandon cannot.
I just wonder what he is thinking, feeling. I know it is hit or miss if he has a good day either at home or when he was at his Day Program - but I know for sure it has been more "miss" than "hit" since he's been stuck home. I try my best - but I cannot be everything and everyone he needs day in and day out - all day and all night - all week and all weekend - all these months. I simply cannot. I try and take him places, at least driving around. On a good day he loves to simply have the window down and the wind blowing on his face. The problem is, I never know if it's going to be a good day or bad day. More often than not, I have driven around a screaming, biting, pinching Brandon. I have spent more time preparing to take him to my brother's pool to swim than actual time spent there swimming because something set him off. No good deed has gone unpunished during this difficult season.
The other day I counted 17 times.
17 times I had to rewind the Hallmark "Christmas in July" movie I attempted to watch. That's how "fun" the quarantine has been for me. It took the full day to watch a 2 hour movie. There's no "catching up on reading" or "family projects" or "Netflix binges" for a family like mine.
I like to think my strongest trait is that I am mentally strong. I can endure, persevere, survive.
I credit HOPEISM and Faith for that.
But I did find my kryptonite. The realization, for the first time perhaps, of just how little my son's quality of life matters to society. How little families like mine are regarded. People will riot and protest and rally for everyone else - but not for those like Brandon, families like mine.
To have been sucker-punched by that, as I shared, has literally broken my heart.
I have a husband, another son, I have a daughter-in-love, I have a #Grandfishy, and I have a family. I have illusions of being able to volunteer, serve, help care for my Grandson.
I'll get no time for any of that, or to be a part of their lives, if life like it has been continues.
If society, our government - continues to just take away the only help many of us even get in terms of caregiving help, Day Programs, Respite.
I can't even depend on one day finding a group home for my son if they can just shut us out from seeing him, personally seeing him, anytime they want for as long as they want. I just couldn't do that. My son cannot talk, he cannot "zoom" a meeting with us. I need to see him, to see if he's safe, if he's clean, healthy, not bruised or broken from abuse.
The continual cruelty of no options.
COVID doesn't scare me.
Not for me, not for my son.
There are worse things than dying.
Like never being allowed to fully live.
Our lives before this has been a sort of prison, in how limited our opportunities are, for us as a couple, for Brandon as a severely affected adult.
What has happened, is that we've now been moved to solitary confinement.
And what scares me most is knowing that this could be the rest of our lives.
My son will not wear a mask to attend a Day Program. He won't even wear a hat on his head! The care he requires does not allow social distancing, not that he even understands what that terms means. Vaccine Injury is what got us in this position in the first place, so no, we will not vaccinate for COVID or anything else to go to a Day Program or Group Home or Respite Day. He needs dental surgery, but would have to have a COVID test to do that. He can't tolerate a Q-tip to clean his ears; and someone in some agency or hospital thinks I'm going to allow someone to shove a swab up his nose and possibly have it puncture his brain when he does fight them and jerk suddenly from the trauma of it?
So where does this leave us?
And does anyone even care?
I guess I'll leave the answer to the question I was asked with the below video.
What caused him to do this?
I have no idea. Maybe he was frustrated from being stuck at home, maybe he was in pain from PANDAS, maybe he was over-stimulated from me mopping the floor or mowing the yard earlier.
I don't know.
All I know is that this video is a representation of what our endless days at home have been like. Trying to do our best to make it a good day for him, trying to survive the stress of when it's not such a good day for him.
Listen to the very end after the brief moments of silence.
That is perhaps my best answer that describes how this coronavirus situation has affected me.
I just....want to scream.
For the cruelty of all this precious son I love with everything I have must endure daily, for the cruelty of how this has made it even harder than it already was to have a marriage, for the cruelty of having nowhere for our son to go outside his four walls so Todd & I can have a break, for the cruelty of always having to be a beggar begging for a break, for the cruelty of not getting to be a part of my #Grandfishy's life, for the cruelty of it all.
Click video for "The Sound of Autism"
I suppose the epilogue of this is that I know Team Guppy will survive this time.
We may have to flee to Mars or some planet where there aren't quarantine-loving, mask-wearing germophobes who worship the vaccine gods.
But we will survive.
Life has been tough lately.
But Team Guppy is TOUGHER.
#NDCQ
