Why What We’re Doing Matters

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.

Freedom.

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!

No.Other.Option.

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!

Ask!

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.

Is 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…

Together.

#haveRVwilltravel

#TagTeaminItForLife

 

A Support “How To” For Those Who Want to Know.

I was asked a very compassionate question from a non-autism parent about how to respectfully support autism families in our community. Here was the question:

I’m so sorry for your daily struggles and I certainly won’t pretend to understand. One question if you don’t mind me asking; what is an appropriate way to bring awareness, acknowledge the lack of research and funding, show support for friends and loved ones, etc?  We try to contribute to different organizations and in return, we are usually given things (t-shirts, pins, etc) but it’s hard to know the fine line between respect and support vs celebration and feel good behavior.

First, do not buy into the businesses that have been formed to make money off of the nightmare that is autism such as the big one Autism Speaks. If you ever look at their info they have to share, a huge chunk of money they raise goes to big money salaries and fancy New York offices. They have now spread to Houston. Every now and then they promote or do something good but in the big picture, they do not contribute to actual research that is relevant nor true day-to-day help for families that are struggling. The daughter of the original founders who herself has a severe son has openly written about why you should not support them.

What you can do instead of just buying the blue puzzle pieces and the ribbons and the bracelets and doing those walks autism speaks loves to put on is pay attention when it’s time to have legislation passed that actually creates funding for good quality therapy centers, adult day programs, and residential programs because right now Texas is third to last for taking care of both our disabled and veteran populations.

Pay attention when teachers and schools say they need more help to be able to support the kids they see in schools and put pressure on the Texas education agency to provide more funding and help in training because as that huge number of kids being diagnosed with autism rises our school districts are overwhelmed.
Pay attention if your church does not have a disability ministry and help volunteer and start one because I guarantee you all the churches that have a strong disability ministry it is put on and managed by the parents of the disabled kids themselves who already are tired and exhausted and stretched to the max.

When you see a mom in Target struggling with a large teenage boy who looks like he’s throwing a fit over not being able to get a Thomas train either standby quietly to see if she needs help or just walk away without judging our staring.
When you see a family in church with a child or adult who keeps making weird noises don’t shoot them dirty looks rather ask the mom if you could help or better yet just act like you don’t notice it at all because that mom is so desperately trying to just get a few minutes of comfort in a church that should embrace her and her son who can’t be still or keep quiet.

I have had friends who are cancer survivors tell me they have the same thoughts and frustrations with all the pink ribbon awareness crazy that goes around breast cancer month when they see women who are in the trenches struggling and have no family or financial support.

Autism is a lonely disability for families who eventually just quit going places because your kids just seem strange and loud and different and people judge and stare.

The real awareness would be families like mine who have a 225 pound teenager that still acts like a five-year-old to be able to go out to places everybody else takes for granted such as the grocery store, restaurants and church and not be stressed constantly that people are going to act annoyed and bothered by us and feeling like the community really sees us and knows when to lend a hand or just to look the other way as we try to get through our days.

Real awareness would be not just feeling good that you are contributing from the outside looking in wearing an autism puzzle piece T-shirt during the month of April and then forgetting about these families the rest of the year. I guarantee if you look around in your own church, your own neighborhood, your own school or wherever you frequent often you will see autism families that are sitting on the sidelines trying to get through their days with children who will never grow up who will never leave home and who will never reach milestones and will eventually have to be left behind to be cared for by others when their parents are gone. Real awareness is helping us families figure out a plan for all of these adults with autism to have a quality place to be left one day when parents can no longer care for them.

If autism has not affected your family yet the way the numbers are rising it will.

If you managed to escape having a child with autism there is a good chance you will have a grandchild with autism. This is a community/society problem that right now is being left only to be solved by parents whose shoulders are already so weary.

I absolutely love this question! Thank you!

When Children with Autism Grow Up.

Take a look at this link. The story covers what we parents have been asking from day one – what happens when our kids with autism become adults with autism if they are not able to take care of themselves? Sad. There is a quote here that calls this a “groundbreaking study.” Groundbreaking? Not really. I have been asking these questions since Tyler was diagnosed in 2004. We just hit 1 in 36 people diagnosed with autism in 2017, and articles like these just keep asking the obvious questions with no real work towards a solution!

https://www.disabilityscoop.com/2018/03/05/autism-challenges-persist/24802/?platform=hootsuite

 

What Keeps Autism Moms Awake At Night?

I had so many autism moms of younger kids send me this after they saw my post that I took Tyler out for lemonade frozen ice in Fulshear by myself Saturday night. They know Tyler is 225 pounds 5’10” now and even after years of therapy still on the low to moderate end of the autism spectrum. For those that asked how, years and years of 14 hour therapy days and we are still not done.

This mom in this video says what all of us are afraid of when they are little. What happens when they are bigger than me and have a meltdown in public? And the real question that keeps us up at night, what happens when I am gone who will take care of him?

This mom says this (and more) so eloquently I wanted to share her post. There are many “lasts” for parents as they go through the seasons of raising kids – only other special needs parents get the “last” time you really thought this will be ok.

https://www.facebook.com/todayparents/videos/10155588729997984/