Washington, DCApril 2018

A Silent Stand

Be still

What if we could cause a shift in public policy this April by just remaining still? Sounds counter intuitive during a month full of bustling activity and autism awareness conversations, right?

April 2017 may have a unique opportunity where the mountains we face on a daily basis could fall.

What if members of our community that choose to stand in the gap for everyone would just be still and quiet themselves for three days? How might something so small change our circumstances from a public policy perspective?

Before we go any further, we know what you are thinking, “Be quiet? Are you kidding? It’s IEP season, Spring Break, Prom Season! Our home is never quiet if anyone is awake because we are busy people!”

But we don’t mean silence: we mean quieting your soul for just three days while you examine your heart, pray fervently and ask God to hear you.

Between noon on April 8th and noon on April 11th , Unlocking Autism is calling for God’s people in our community to be still. During this unique period of time connecting Palm Sunday, Passover and the fast of Esther, the windows of heaven are wide open. Each one of these stories demonstrate a common theme of God moving His people from personal reflection to hearts of obedience toward hope, freedom and redemption.

Let’s focus on the story of Queen Esther, who upon finding out that the Jews were to be annihilated by a decree of the King, called for her people to fast and pray for three days before she approached him to ask him to change his policy and save her people. She was really nervous about this request because it could easily have resulted in her death. So she asked her community to ask God for help first. She didn’t jump on this opportunity at first and gave her Uncle Mordecai some very seemingly valid excuses to be quiet and stay in her chambers.

Mordecai’s response to her was very stern in Esther 4:13-14:

“Do not imagine that you in the king’s palace can escape any more than all the Jews. For if you remain silent at this time, relief and deliverance will arise for the Jews from another place and you and your father’s house will perish. And who knows whether you have not attained royalty for such a time as this?”

Mordecai points out this very specific moment in time was critical for the whole community and Queen Esther was perfectly positioned to change history. But Mordecai warns her, if she chooses to remain silent that God will find another willing person to bring relief and deliverance. He does this because when a person in position of authority does this, they bear the brunt of the outcome due to their failure to address the issue.

The particular word for silent in this passage does not mean to not talk, it means not to listen. It means you heard to the issue but gave tacit approval for it to continue by not listening to it and then speaking up. It has the same kind of meaning as someone who sticks their fingers in their ears during an argument and says, “LA LA LA LA LA LA I am not listening to you.

For nearly two decades, Unlocking Autism has watched lawmakers, policy changers and even leaders and community members hear what is being said but not really listening to them.

But we know these things to be true:

There is no authority except from God, those that exist, have been instituted by God and the king’s heart is like channels of water in the hand of the LORD; He turns it wherever He wishes.

In 2 Chronicles 7:13-15, God even gives us a clear recipe on how to change our circumstances: “When I shut up the heavens so that there is no rain, or command the locust to devour the land, or send pestilence among my people, if my people who are called by my name humble themselves, and pray and seek my face and turn from their wicked ways, then I will hear from heaven and will forgive their sin and heal their land. Now my eyes will be open and my ears attentive to the prayer that is made in this place.”

The thief comes to kill, steal and destroy but God will restore what the “locusts” have taken from us and requires the thief to pay back seven times what he has stolen, even if it costs him everything. Our enemy does that in several ways: by destroying our peace, our hope, our love for each other, our unity, our faith, and the truth. He chips away at it until we are worn out, weary, broken and fighting everything.

And it is up to us to choose which voice to listen to: the voice whispering lies, death and destruction or the small still voice that brings truth, hope and life.

Fasting gives us an opportunity to humble ourselves before God while asking forgiveness for our wrongs then presenting our requests to Him with clean hearts and pure hands. When we are still, does God fight for us – but our souls must be quiet to listen to what He has to say.

176 children are diagnosed with autism every single day in the United States alone. During the month of April, we will add 5,280 new families living with autism to our growing community. One moment of silence for each of these new additions would take 88 hours – which oddly enough is a little over 3 days.

We know it will be difficult for everyone to be completely quiet but here are ways you can participate – pick one that you can commit to:

  • Carve out quiet space during these three days to read God’s word and pray.
  • Don’t use social media, your phone or return emails (except for emergencies).
  • Keep the television and electronics to a minimum.
  • Don’t watch the news.

When you find that quiet space and peace, wherever it shows up during the day, pray.

  • When you pray, pray in faith – even if you only have faith the size of a mustard seed.
  • Pray that God will move our mountains collectively as a community, and move the individual mountains your family faces.
  • Pray for restoration.
  • Pray for healing in our community and our nation – spiritually and physically.
  • Pray for God to move the hearts of our leaders at all levels to come into alignment with His will.
  • PRAY BIG.

God tells us to be still and know that He is God. The word for still in this passage means abandoned, alone, helpless, collapsed, discouraged, dropped, a failure, feeble, forsaken, fallen, lazy, afraid, relaxed, waiting, slack and lifeless. We can be a total mess, give it to Him and He is still God. He is able to fix our situation then give us beauty for ashes, joy for mourning and praise for despair.

We have hope that our stillness before God will be heard, that He will help our leaders to speak and not remain silent. We believe that our hope will not be put to shame. God’s ways are not our ways and sometimes we have to do something different to bring the accelerated change we need.

Being still and praying for the next couple of days won’t hurt – and could change everything.

 

Helping the Sanders Family #peoplelikethat

Delasbar Sanders flood

Meet the Sanders family and their beautiful daughter, Amoree.

Early in the morning on August 14, 2016 their apartment was flooded by the Amite River that had crested far above its normal banks and was now raging through their neighborhood.  What is normally a 50 ft wide and 15 foot deep river became 10 miles wide and 46 feet deep.

Her father was trying to evacuate wading through floodwaters with Amoree on his shoulders, but the current was too hard and Amoree came loose!

As her terrified parents watched, Amoree was swept away by the current but suddenly popped back up and began to swim!  Delasbar has been taking her to the Terrific Turtles Swimming Program at the YMCA and said that Amoree has been glued to the television, especially focused on watching Olympian Michael Phelps swim.  Delasbar said that every time Phelps was on tv, Amoree would come running into the living room to watch him.

Those lessons and her interest in swimming paid off! Amoree was able to swim back to her father just in time for the whole family to be rescued by four unnamed heroes in a boat.

The Sanders family booked a hotel room but when they arrived at the hotel it was full. The hotel allowed the family to dry off and charge their phone in the lobby and helped them find another place to stay.  They have a hotel room secured now for a week but no home to return to – everything was a total loss.

Our families know how difficult our children’s restrictive diets can be on a bright, sunny regular day.  When you are in a crisis and have no way to feed your child Tyson chicken nuggets it can be difficult.  When you are staying in a hotel room without a microwave or a refrigerator that can be nearly impossible.

Amoree is missing her Team Umizoomi DVDs and Millie Talking Doll.  She also loves Sid the Science Kid DVDs.  Let’s help her get some of the things that are most familiar to her as soon as we can – maybe someone could get Amoree something autographed by Michael Phelps!

When they stopped by this morning to pick up their emergency gift card to Walmart, Delasbar said she knew she was in the right place when she saw our Unlocking Autism license plate.  Her family has #301 and has been in the UA family longer than we knew! It is a difficult way to meet each other but we are working together now to build a brighter future.  Their car below was lost in the flood. Water rose until it was 1″ from the top of the vehicle.

Delasbar Sanders license plate UA

The Sanders family has lost all of their clothing and would appreciate donations.  If you box them and send them to Shelley Hendrix, Unlocking Autism, PO Box 41312, Baton Rouge, LA 70835 and write SANDERS FAMILY on the box, we will make sure they get them.

Amoree – Girls sizes 16 & 18 and shoes 4.5 to 5

Delasbar – Women’s 28 and shoe 11

Warren – 3X and 12 shoe

All donations made to Unlocking Autism via The Power of One right now are going to help Louisiana Flood Victims. You can make your tax deductible donation to Unlocking Autism and we will continue to provide gift cards to our families so they can get the items that will help their families personally rebuild.  If you don’t want to send monetary donations, Flood Care Packages are a huge help to our families as well.  You can find out what families need here.

Once the flood waters dry up and our families dry out, we will all be working together to ensure that an emergency plan is in place for our community – and available for other communities to adopt – so that no family is ever turned away from a shelter because they don’t take “people like this.”

With great thanks,

The Unlocking Autism Family

Care Packages Needed to Help #peoplelikethat

General Care Packages

Please help our families living with autism in South Louisiana by sending general care packages to them.  You can find Large USPS Priority Mail Boxes at your local Post Office then fill them up with goodies listed below.

Please print off this list and then check off what is included.  Include notes for our families to let them know they are loved.  We will pick up the boxes daily and give them to families in need.

Thanks for helping us and for praying for us here in South Louisiana!  We are all one big autism family!  All of us at Unlocking Autism are so grateful for your help!

ITEM INCLUDED ITEM INCLUDED
Toothbrush   Granola Bars  
Toothpaste   Protein Bars  
Floss   Pretzels  
Shampoo   Snack Crackers  
Conditioner   Diapers  
Soap   Formula  
Bandaids   Baby Wipes  
Bug Spray   Towels  
Qtips   Deodorant  
Kleenex   Neosporin  
Hand sanitizer   Hand Soap  
Bacteria Wipes   Gift Cards  
Dry Shampoo   Tampons  
Sunscreen   Sanitary napkin  
Koolaid single pks   Hairbrush  
Walmart gift card   Comb  
CVS gift card   Gold Bond Pwdr  
Hand lotion   Deck of cards  
Pens & notebooks   Flashlight/batteries  

Please send USPS Priority Mail Boxes to:
Shelley Hendrix, Unlocking Autism
PO Box 41312, Baton Rouge, LA 70835
(Label box as GENERAL CARE PACKAGE)

Helping the Johnson Family #peoplelikethat

kevira flood
Kevira Johnson’s family evacuated on Saturday, August 13th from their home in Baton Rouge, Louisiana that was quickly filling up with flood water.  Her family has four children ages 16, 10, 3 and 7 weeks. Their 10 year old daughter has Angelman’s syndrome.

The house filled up with 5 feet of water and everything is a total loss.  Their sweet girl lost her pull ups, AFO braces for her feet, mechanical walker, wheelchair and medicines.

kevira flood 2

They are not in a shelter. They are not at Kevira’s mother’s home because their daughter would have to sleep on the floor.  She has a curve in her spine and would experience serious pain sleeping on the floor.  She cannot communicate pain or discomfort.

All six members of this family are living with a relative in Bogalusa, LA in a one bedroom home.

Right now, Unlocking Autism has only raised enough to give their family a $250 gift card from WalMart.  Communications are difficult with families on the move and unstable cell phone coverage. Clothing and shoe sizes for the family members are listed below and you can mail them to Unlocking Autism, PO Box 41312, Baton Rouge, LA 70835. PLEASE WRITE “FOR JOHNSON FAMILY” on your box to ensure we get it to the right family and we will deliver it as quickly as possible.

We need to raise approximately $1500 per family to be able to move them into stabilized housing, provide them with blow up mattresses, pillows, sheets, towels, toiletries and one week of food to get them started.  Several shelters around the area have stated that they don’t take “people like that” referring to our children with autism spectrum disorder and related developmental disabilities.  We will work to fix that for the next big storm but for now, we need your help to help this family directly.

Unlocking Autism is an all volunteer organization and all funds raised will go directly to families at this time.  Visit Unlocking Autism to make your tax deductible donation. The Johnson family thanks you for your help!

CLOTHING AND SHOE SIZES BELOW:

Fwd: Kym
Xl woman
14 misses pants
Panties size 8
Bra 38 DD
Shoe size 10

Keira
Girls 14 top and bottom
Pull ups size xl
Shoe size 5y

Londyn
Girl size 4t-5t top and bottom
Panties size 4t
Shoe size 10

Brooklyn
6mths -12 mths
Diapers size 1 or 2
Formula Enfamil  infant

DD
Shoe size 10 1/2
Shirt size medium/large
Pants size 31/32 or 32/32
Jacket size large
Underwear large

JB
Xl shirt
Xl drawlz
Pants 38 waist 34 length
Slim fit pants 40 waist ( big thighs)
Shoes size 12
Favorite colors red black royal blue

 

Thank You Congressman Garret Graves!

Unlocking Autism is so grateful to Congressman Garret Graves (LA-6) and his dynamic staff who submitted language for the Fiscal Year 2017 LHHS/Education Appropriations Bill to include report language advising DHHS to develop a pilot program to improve integrated treatment protocols for children with neuro-developmental disabilities, including autism, that specifically seek to address the comorbid diagnoses that often accompany the primary diagnosis focusing on physical and mental health issues.

Many children with autism have comorbid physical issues in their gastrointestinal systems, sleep disorders and seizures, as well as mental health issues like ocd and anxiety that can easily be addressed. Often the treatment of our children’s symptoms are either not well coordinated among treating physicians or dismissed and overlooked.

This will hopefully begin the discussion necessary to change that paradigm.

The letter is below and we will let you know soon how you can ask your Congressman to support this initiative to improve biomedical treatment for autism. What a great way to start Autism Awareness Month for 2016. Thank you again Congressman Graves!
 

 

 Click the image below to read the full letter!

congressletterhead

Are We There Yet?

Kids-Station-wagon

Are We There Yet?

Here we are. On the road again. All of these organizations in the autism family station wagon heading to Wally World.

Are We There Yet?

No. No we are not. And we still have a long way to go, so stop poking your brother.  If he is bothering you, look out the window and see what else you can see but do not poke back. Stay on your side. Keep your hands on your lap. When we stop for gas you can each poke each other hard once but you will have to wait until we stop. And right now, we can’t stop because we still have a long way to go.

We know it is cramped with all of these different organizations in here.  Especially since you don’t all like being in the same car, traveling down the same road not really knowing where we are going.  Everyone is yelling directions and fighting about which way to go to get there faster. Our driver would get a headache if only someone was actually driving the car.

Without one, we are weaving all over the place and it is a wonder we haven’t run into a ditch.

Are We There Yet?

No. No we are not.  For the last decade, The National Institutes for Health has addressed the fastest growing developmental disability by spending 20 cents for each person living with autism per day and while it isn’t the United States’ job to find answers for a significant worldwide health issue – globally, that translates to 1 penny per person with autism worldwide per day for research.  Two dimes or a penny.

Are We There Yet?

No. No we are not. Without a driver driving every day, it is hard to tell if we are going around in circles. We pass signs then say – didn’t we already see that eye gazing study before or didn’t we study behavioral therapy a couple of miles back?

Are We There Yet?

No. No we are not. In the ten years since that landmark legislation was enacted, the diagnostic rate of autism has increased from 1 in 250 kids to 1 in 68.  That is an increase of from 16,000 children per year to 58,823 children per year.  Because the budget has remained basically flatlined, that also means we are now actually investing 73% less in autism research per kid diagnosed each year than we were in 2005.

Are We There Yet?

No. No we are not.  There are still thousands and thousands of children in this country who do not have appropriate access to treatment because Congress hasn’t entertained introducing legislation requiring federally regulated companies to provide coverage for autism treatment. Johnny’s parents who work for a smaller company and live in a certain zip code can help Johnny access medical care for his autism while Abby’s parent who live down the street and work for the local oil refinery can’t because they have to pay out of pocket and don’t have the money for it. Some large companies have voluntarily agreed to cover medical treatment for autism. That’s great but with this many people impacted, shouldn’t every person with autism wishing to have access to treatments and therapies be able to without going bankrupt because of where they work?

Are We There Yet?

No. No we are not.  Not when our children are still struggling for a free and appropriate education. Not when we have to pass laws to stop restraint and seclusion. Not when we have children who wind up abandoned on school busses because they fell asleep in the backseat and no one was watching over them.

Are We There Yet?

No. No we are not.  Not when our loved ones are handcuffed to hospital beds because they are screaming. Sometimes people yell when they have a four foot long ulcer in their small intestines and difficult behaviors can occur because of them, or when they have broken a foot but can’t tell you, or when strep bacteria has gotten into their brains and cause inflammation with really bad headaches. We need a medical system that will implement whole person treatments for underlying biomedical reasons for behavioral manifestations instead of jamming a kid with a four foot ulcer full of mind and mood altering chemicals.

Are We There Yet?

No. No we are not.  We need law enforcement officials who are trained to help find people we love when they run straight out the doors of their school before they run into the water.

Are We There Yet?

No. No we are not.  Not when there are no supports for our children after the age of 21 to care for them because we couldn’t access the care and our communities didn’t invest in them when they were younger to prepare them for a more independent adult life.

Are We There Yet?

No. No we are not.  Not as long as we are fighting with each other instead of for each other.

Are We There Yet?

No. No we are not.  Not as long as the Mommy wars continue and you insist on judging people for the way they choose to raise their children. I’m sure your essential oils doing awesome things while they make your kid smell like pot but maybe someone would rather just give their kid pot to stop their seizure activity. You don’t like the idea of giving Marinol to your kid to stop seizures. Fine. Don’t. Raise your own children your way. Let others raise theirs. Honestly – don’t you have enough to do in your own home than to worry about what is happening in someone else’s?

Are We There Yet?

No. No we are not. Not as long as we are stepping on one another to get ahead. Not as long as we aren’t reaching back behind us to pull another family up. Not as long as we are sitting behind our computers committing violent acts of sniping, cursing, gossiping, goading and slandering one another. Your words matter. The power of life and death are in the tongue so speak life or be quiet and just listen to someone else’s situation then learn something from their point of view.

Are We There Yet?

No. No we are not.  Autism currently affects 1 in 68 children who were born in 2002 and we aren’t sure what the rate will be after that but a preliminary study released last fall indicates the number could be rising to 1 in 45 soon.

If the diagnostic rate magically stops at the 2002 rate then at least 764,699 children have been diagnosed in the last 13 years and the CDC has not reported your kid in their count yet.

How long is it gonna take?

As long as we want to drive in circles.

So especially if the CDC hasn’t counted your kid yet, stand up and BE counted in Washington, DC on April 2nd at The Power of One March.  Save the taxpayer’s pennies and show the next administration how many of us there are. Show them we aren’t just numbers.  We aren’t just stats. We are one and each one of us has a life to live.

Take a pit stop on this road trip and spend one night, marching side by side with people in this community no matter what they believe causes autism, no matter what they believe is the best treatment or if you should even treat it. No matter what.  Because we are family.

March the way you want to supporting the causes within our one united community that you believe in.  Wear one bracelet or all six to support all 12 groups. After expenses, every penny will go back to directly help an individual with autism. We are giving it all away.

Let’s take the first step this year to give the next administration a preview of our community so they will appoint us a driver – then work to make sure all groups participate next year.

Maybe then we can finally get where we need to be.

Support bracelets and souvenir t-shirts are available on demand until Wednesday March 23, 2016 at noon Eastern. Register today at www.thepowerofonemarch.org. Make plans to attend by reviewing the GET THERE tab for hotel accommodations, airline and train discounts. See you in DC.

Assembling the “Peaces” of the Puzzle

Mary Kay, Ryan, Riley & Patrick

Mary Kay, Ryan, Riley & Patrick

When Unlocking Autism held the first Power of One Rally in Washington, DC in April of 2001, we were just beginning to wonder about new behaviors that our son Riley was exhibiting.

Eight months later, we had a word for it.

Autism.

By the time Unlocking Autism rallied the various national autism groups to band together again in April of 2002, I was still learning how to find our way post diagnosis. For the second year in a row, Unlocking Autism had rallied the various factions of the autism community to come together on day of peace. People came from all over the country. All fifty states, other countries and every autism group – all represented on a rainy, muddy day on the Mall in Washington, DC.

In 2004, the community was beginning to fracture when Unlocking Autism issued another call to unite us equally at The Power of One.  I was pregnant with our third son, Patrick, and unable to attend.

It was difficult to be home-bound in Chicago while my new friends were gathering on the Hill watching Dan Marino pass a football to various congressmen.  By then, we had found our way and I was serving Unlocking Autism as a regional volunteer leader for the mid-western United States.

I wanted to attend so badly that I remember calling different people and saying, “Just let me hear everyone cheering!”

Everything eventually comes around again.

Old is new.

Now, Unlocking Autism has issued the call once more. This time we will not rally. We will all march together.

You better believe I will be in step with my brothers and sisters in our autism family at The Power of One March on April 2nd, along with my three sons, who are now all diagnosed with an autism spectrum disorder.

We will be “assembling the peaces of the puzzle.”  It took me a minute to catch on to that slogan and I thought they had misspelled the word, but then it hit me like a ton of bricks! If everyone in our community would stop holding onto their “piece” of the puzzle, lay it down and work together then with “peace” would come solution.

Each one of us brings a different life perspective. What our family experienced with our sons may have some similarities to what you or your family experienced, but chances are that each situation is ultimately unique.  Each one of those distinctive opportunities gave us various skills and broadened our wisdom in a specific way to be a help to one another.

Some body parts might be more important than others because they are vital to being alive, but if you don’t think your big toe is important, try navigating my sons’ bedroom, full of Legos and action figures, in the middle of the night in the dark to check on him.

We are all important.

We all have something to contribute.

We have to lay our pieces down…in peace. 

We are all unlocking autism and we are all better together.

Mary Kay Betz lives in the Chicago area with her three sons – Ryan, Riley and Patrick. She has volunteered with Unlocking Autism since 2004 and served as the Executive Director for the Autism Society of Illinois from March, 2007 to March, 2015.  Because her service to her fellow man is ever evolving, she is now studying to become a nurse.