Y’all at Autism Rescue Angels we are all about truth and real solutions…and HOPE. (And from the South hence the y’all…)
A fellow warrior mom in the trenches just shared a post so raw and truthful and real that we are reposting it here.
This. Is. It. This is why your donations matter but also why your time and energy to help our autism families matter.
To see us. See our children. See the reality of what is coming down the road for not just our individual families but for our communities and society as a whole…
What follows are the words she so eloquently shared:
** It takes a village yet we often find ourselves feeling like Castaways on a remote island…I share this with lighthearted laughter, but my tribe will understand the internal screeching of it…
As much as you think they do – people – even those closest to you – still do not grasp the reality of our “Life with Autism, Seizures, and a side of PANDAS.”
Twice today Todd was asked what he got for Father’s Day.
He got freedom.
I told him to go, leave skid-marks in the driveway, and go. Go, do, be.
Away from HMMMMMMMMMMMMMMMM, away from constant interruptions. Away from changing, feeding, redirecting.
Away from the noise of “silence”.
He went to Galveston yesterday, hopefully went to the BBQ place he wanted to try, and today, he went to run in the rain at the trails of a park.
He got Medical Marijuana for his son that costs $627/month. He got supplements and life insurance and other things that no other person or agency pays for – for the life of our adult son.
No one gets that.
Parents of adult children like Brandon who cannot work or care for themselves are essentially “homeless” if you will. They would literally be on the streets or abused/neglected/murdered in some overcrowded agency if we didn’t sacrifice our own lives and say that we will care for him in our home.
We have said to our son “we will be your Good Samaritan” – we will feed, clothe, care for, and house you. We did that because we love him and because it is what you do! It is our duty and honor. And we will do it for as long as we physically can! Even if we didn’t want to, there isn’t even another option for Brandon’s level of need!
How many of you who have typical children would want to be the sole financial provider for them for the rest of their life?
None of you! At 18 you relish getting the chance to do what you want and to choose to spend your money how you want.
We will never have that.
Our choice to care for our son comes with a price tag. One that costs everything. We’ve had to choose us, or him, and we chose him. So everything goes toward him.
I would have hoped by now the church, the community, our typical friends and family would get that. But no, with few exceptions, people give to the church/cause/crisis to help someone in other states or countries, but not someone they literally pass on the street daily as they do when they know of a family like ours and do not offer to help in some tangible way to provide for something that person needs.
It has befuddled me for so long how we do that. Give to so many other things in the name of Christianity or charity before first asking if you can help the person you know of who bears a financial burden that will only get heavier as their retirement income gets lighter.
I am thankful to the precious few who have understood that in our life. Who have asked what they could provide for our son and who have provided it as they could. That has made the world of difference whether it was $10, $200, or $1,000.
Even if you have no dollar to give toward their care, you could volunteer at the few places that do provide respite so they can provide it more often, or if you like to cook, – offer to cook their special diet meals for one week a year! Each of those things are so tangible and doable. Single-moms could use help with car maintenance, yard work, handy-man items!
Each person you know who is caring for an adult child with a disability like autism that affects them on every level – needs a village. Yet most often they feel like they are instead on a remote island.
They need your prayers, but they also need your tangible help.
Ask. Offer. Bless.
So no, we don’t buy gifts for each other. There is no room for such luxuries when we are the sole providers for our son for all things that actually help our son. Parents (at least those like us) cannot do it on their retirement income, and these adult children will live a relatively long life…
I hyperventilate when I think of what will happen to our son’s health when his dad retires. Nothing of what helps our son have any quality of life, is covered by 1) our private insurance, 2) medicaid, 3) agencies designed to help.
We watch the world go by us and while we know we are secure in knowing we are doing what we are called to do – it still hurts deeply to watch those around us do things we could do if not for the high monthly cost of caring for our son.
Everyone I know is in that situation!
Yet no one around them seems to have a clue to offer to help in some way!
Every.Dime.Would.Make.A.Difference. It would say to that person, “We can’t change your world, but we can help ease the burden of the tiniest financial fraction of it.”
And that – would be priceless.
Todd’s gift for Father’s Day was much like my gift for Mother’s Day. We cannot go out and do things together – so we have decided that we are not going to sit home and rot together. One of us goes and does what they would like, and the other hangs with our son.
It’s how we do Birthday’s, and any such occasion.
It’s most likely how we’ll do retirement.
We will take turns traveling, visiting, racing.
Unless someone buys us an RV.
Then we could take this circus on the road…