Young & Old, Autistic Individuals Have Nowhere To Go

Adolescents and young adults with severe autism may still have the mental age of a child, and short-term care to stabilize those in crisis who are nonverbal or combative is practically nonexistent. Longer-term care can be almost as hard to find. It must be highly specialized, usually involving intensive behavioral therapy; someone with severe autism gets little benefit from traditional psychiatric services.

Christina Jewett’s article has all good points, but this too stands true for adults with Autism. Many people with autism have serious comorbid conditions. Autism is not just mental health it is medical – a whole body disability.

Read Kaiser Health News’ full article here.

5 Reasons Why We Do What We Do

5 Reasons Why We Do What We Do

  1. The annual cost of autism therapies and treatments can exceed $40,000 to $80,000 per year. The lifetime cost to support an individual with autism is greater than $3.2 million.
  2. The majority of autism treatment options are NOT covered by insurance.
  3. Some estimates indicate that the rate of underemployment among adults with autism exceeds 90%.
  4. Autism impacts families. 70% to 80% of parents with a child with autism will get divorced.
  5. Children who are autistic grow into adults who are autistic. The greatest fear of parents of a child with autism is “who will care for my child (or children) when I am gone?”

Source:  Autism Action Partnership

** Summer can be tough for people with autism without a consistent school or therapy schedule!
Please donate to support summer therapy and medical needs. Thank you!

 

 

Summer is a time for extra therapy and extra expenses.

Summer is here and many families are trying to afford extra therapy while out of school. Please consider donating ON OUR WEBSITE!! Thank you.

The following is a testimony we would like to share from a family we have helped thanks to the WithMerci Foundation’s support:

Hello,

My son, Wyatt, is five years old and has been diagnosed with severe non-verbal Autism, behavior disorder and aggression issues. He also has Epilepsy, Asthma, a rare stomach disorder, and many other health conditions. Wyatt has a twin brother and was born two months premature.

After spending the first 6 weeks of his life in the NICU, Wyatt started receiving ECI therapy at home at the age of four months to address developmental delays. He crawled, sat, stood, and walked about 6 to 8 months later than his twin brother, but was otherwise a happy, affectionate baby.

Around the age of 2.5 yrs, we started noticing a big personality change. At first, we thought him hitting his head was just a stage and that he would eventually take an interest in playing with his siblings and toys like our other children. When he completely stopped babbling and saying mama, we became concerned and had him evaluated. As it turned out, the psychologist not only discovered Autism, but also absence seizures that we confirmed with a neurologist and further testing that came with his Epilepsy diagnosis.

Since age three Wyatt has gotten bigger, stronger and much more aggressive. PPCD was focusing on academics, when really his behavior was the issue that was tearing our family apart and going to prevent his success in life. My husband and I knew that full time ABA therapy was the only answer for Wyatt but after calling program and after program, we also knew we couldn’t afford it on a single income. My sister suggested that I apply to Autism Rescue Angels for help and they were really our last hope. I remember writing the email and then holding my breath. I didn’t even tell my husband because I didn’t want to get his hopes up.

Well, Autism Rescue Angels answered our prayer and covered our insurance deductible. The change in sweet Wyatt since beginning ABA is nothing but a miracle and the support that we all receive from the Texana team is amazing. We went from feeling like we were drowning to feeling like Wyatt is on a path to succeed and we are on the same team working towards that future. It is hard work, but having answers and plan is more than I could have hoped for less than a year ago. My boy is smart and capable of doing great things and now his behavior issues aren’t going to hold him back. I am one proud and thankful mama.

Thank you again for everything!!!
Tiffany

 

 

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

 

Be their voices. Be the change.

Today is the 50th anniversary of the death of Robert Kennedy, and this report has us reflecting on something he said, “Every time we turn our heads the other way when we see the law flouted, when we tolerate what we know to be wrong, we close our eyes and ears to the corrupt because we are too busy or frightened to speak up or speak out, we strike a blow against freedom and decency and justice.”

If you suspect a person with autism is being abused or mistreated in a school setting, day program, therapy center, residential facility, etc… please speak up! The most vulnerable are often the targets so we must speak up for those who cannot.

Be their voices. Be the change.

 

Kevin and Avonte’s Law Has Passed.

Repost from National Autism Association

Kevin and Avonte’s Law has passed and will help save lives in the autism community and beyond. To all of those through the years who made phone calls, wrote letters, and advocated for police training, wandering prevention programs, and protecting the lives of those with developmental disabilities, we thank you!

We’re incredibly grateful to Senator Chuck Grassley, Senator Chuck Schumer, Senator Amy Klobuchar, Senator Thom Tillis, Congressman Chris Smith, US Congresswoman Maxine Waters for your leadership on this critical piece of legislation. To the staffers who worked nights, weekends, around the clock to get this bill passed, we are so thankful for you!

Kevin & Avonte’s Law Has Passed