Journey Through Autism

God’s Care Plan

Chicken-Soup-cover1-196x300From the book Chicken Soup for the Soul,  by Penny L. Hunt

While other parents celebrated the exciting moments of first steps, words strung together and towers of blocks being built, we watched… and waited.  But those moments never came for our precious granddaughter, Millie.  Special tests and evaluations were ordered and the landscape of our lives was changed forever when our daughter, Laurie, in words thick with painful emotion, explained Millie had been diagnosed as being severely autistic.

Our family learned more about autism than I ever wanted to know. We watched in shocked bewilderment as the condition swelled to epidemic proportions now touching more than one out of every 100 children!  In our own lives I have seen autism grow bigger than any of us and completely overtake my daughter’s life, marriage and family.

We prayed diligently, trusting God to set Millie free from this mysterious disease. We thanked Him for giving His children the spirit of power and love and humbly asked Him to fulfill His Word and bless Millie with a sound mind.

For years we prayed and for years there was no change.  In fact, life became worse.  What first appeared to be a hide-and-go-seek game soon became a serious issue as Millie began to run away.

Gates, locks, deadbolts and alarms were installed but, with the agility of a pre-school gymnast and the nearly inhuman strength of someone much older and larger, Millie overcame all security systems and, one chilly spring morning after Laurie left for work, the inevitable occurred.

Barefoot and clad only in her underwear, Millie slipped from the house and wandered two miles onto a major highway where she wandered out into oncoming traffic. God intervened that day and answered our continual prayers for Millie’s protection.  Miraculously no one was hurt during the tire screeching, car spinning ballet. Quick thinking motorists used their cars to corral Millie. Highway patrolmen transported her to the emergency offices of family services and after hours of interrogations and phone calls Millie was reunited with her mother.

Laurie kept Millie’s escapes to a minimum by sleeping with doors and windows blocked by heavy furniture. The family primarily lived indoors in a house resembling a high-security prison that nightly violated fire codes and general safety rules. Violent temper tantrums reduced Millie’s room to a space with no closet doors and furnished in the battered remains of a once-beautiful canopy bed and dresser.

When school finally began, additional prayers were offered for the peace of Christ to surround and fill Millie, enabling her to focus and learn. Friends and family joined us in prayer for her, school, teachers and other parents.

Our prayers were answered and a speech therapist began working with Millie using picture and word communications. As Millie was able to more easily express her needs, the violent temper tantrums lessened.

A specialist in behavior modification helped Millie develop behaviors appropriate to retail establishments, grocery stores, restaurants and swimming pools.  We thrilled to hear of her first trip to the movies!

As encouraging as these advancements were, birthdays came and went with Millie remaining nearly nonverbal, eating only a few foods, roaming the house at night and having violent “melt downs” that included head banging.

Equally distressing was her inability to comprehend or be sympathetic toward pain and distress of other living things.  She nearly drowned kittens, forced them into a zippered bag and then used it as a seat cushion. Pets inflicted blows that left Millie bleeding, but laughing.

Eventually Laurie’s best efforts of providing around-the-clock supervision, structure and routine ended with a terrifying crisis.  One afternoon, while baking cookies, Laurie caught a flash of movement in the hallway and looked up to see Millie dragging her pre-school brother across the floor by a cord around his neck.  His face had already turned dark blue. Laurie screamed for help and managed to free her son from the noose.  Millie simply covered her ears and left the room.

My heart broke when my daughter called and, between racking sobs, in nearly indistinguishable words said, “Mommy, I don’t know what to do! We can’t go on like this.”

We held an emergency family meeting where the heart wrenching decision was reached to explore avenues of full-time care for Millie apart from the family.

As is the case in most states, live-in facilities for the care of severely autistic children are few and far between.

Another birthday passed and Millie was now approaching puberty. Medications were changed and the side effects were devastating: weight gain; sullen moodiness; physical awkwardness; and an increase of major melt downs so powerful that Laurie was no longer able to physically restrain her daughter.

Hope was nearly gone when, during a meeting with Millie’s family services team, a member mentioned a group home opening for three autistic girls.  Unsure that space was still available, Laurie immediately rushed to the site. The house, location and staff were perfect. But the timing seemed impossible.  There was only one opening and just six weeks to complete a mountain of paperwork, medical exams and evaluations. Applications were arriving daily and the window of opportunity was closing rapidly.  What had seemed like such an obvious answer to prayer now seemed a crushing disappointment.

I poured my heart out to a dear friend. When she asked if I had been praying, I nearly lost it!  “Praying? My knees are sore from praying! I’ve prayed so long and so often I don’t even know what to pray anymore!”

My friend patiently listened, then lovingly said, “this is the perfect situation for God to do something big.”  She reminded me that it is when we come to the utter end of our human resources that He delights in demonstrating His ability to work miracles.

We ended our conversation in prayer. “God help me put my trust inYou and Your care plan.”

Incredibly, at that moment, I let go of the situation and placed Millie in the hands of her loving Creator.

The series of events that followed could only have been orchestrated by God’s handiwork.  Weeks earlier I had written a letter to Senator Strom Thurmond asking for his assistance in securing placement for Millie.  Now, with only 5 days left to qualify, a member of his staff phoned promising to see what could be done; no guarantees.

Two days later Laurie called. “Mom, Millie was accepted!”

I feel to my knees and raised my hands high as rivers of joy and thanksgiving rolled across my cheeks.

Millie is now 19 years old, well adjusted to group home life and through her public school’s special education program, has made great strides. She speaks in complete sentences, writes her name, works simple math problems and reads at a second grade level. Her drawings won blue ribbons, and at a fundraising event one created a vigorous flurry of bidding!

New challenges and a future as a severely autistic adult continue to keep us praying, but now we’ve learned to trust in God’s plans and, having seen the many times He has been with us through difficult times of change, know there is no reason to believe He is going to stop now!

A Portrait Of Pure Love

By Penny L. Hunt

Millie-Locks-of-Love

It was only normal for the neighbors to call 911 when they heard the torturous screams of a child from the house next door. Not so normal was for the police to be greeted by two soaking wet parents and to find of a toddler, wrapped in a beach towel, positioned beneath three sofa cushions.

It took a great deal of explanation and several phone calls for everyone to understand washing my autistic granddaughter’s hair was like trying to baptize cats and how sandwiching her between sofa cushions provided total body compression which was a comfort to her.

My daughter’s bathroom on “S-Day” (shampoo day) was reminiscent of a well prepared surgical center.  The tub was scrubbed and cleared of all objects including the shower curtain and double lined with long bath mats for padding.  A rubber shower head with soft rubber hose was attached to a padded faucet wrapped in duct tape.  Next to the tub were positioned a stack of wash cloths for wiping water from eyes and ears and a cap-less blue bottle of Johnson’s No More Tangles Shampoo for ease of pouring. It took two adults to get the job done and when it was over, Millie, wrapped in Disney Princess towel would sob in ragged breaths that shook her shoulders and broke our hearts.

Now fast forward 15 years to an e-mail attachment I just received of Millie holding a long, blonde pony tail for donation to Locks of Love.  She had washed and dried her own hair and happily sat still while a beautician cut it for shipment to Locks of Love where it would be used to fashion a wig for another child suffering hair loss due to illness.

Looking at the photo, thinking back to the days of shampoo and screaming, I was thankful beyond measure for all the Lord has done in Millie’s life and was captivated by her smile.  There, in the nearly indistinguishable yet somehow different pose of an autistic child, was a portrait of pure love with no hidden agenda, no ulterior motive, no glory seeking or proud display of generosity.

This sacrificial gesture of love was a living demonstration of the humility Jesus spoke of when He called a little child to come sit with Him as he answered His disciples’ question of who would be the greatest in the kingdom of heaven. “Verily I say unto you, except you be converted, and become as little children, you shall not even enter the kingdom of heaven. Whosoever therefore shall humble himself as this little child, the same is the greatest in the kingdom of heaven”.  Matthew 18:2-4

I may not be donating a pony tail to Locks of Love this coming Valentine’s Day but I pray I will be able to offer, in some small measure, a heart like Millie’s to my Lord and Savior and fellow man.

Eloping With Millie

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I was happy and energized as my flight from South Carolina touched down in Tacoma, Washington. I was going to spend some time with my daughter and two precious grandchildren, Soleil and Millie. In those perfect autumn days of 1996 I knew nothing about autism and, had you shared with me what it was, I would have thought “How unfortunate” and soon thereafter dismissed the notion. Little did I know I was about to begin a journey in autism that would change forever my life and the life of every member of our family.

Millie was one of those blonde, blue-eyed cuties people compliment you on and stop to “goo-goo” over in stores. That is how it was from her birth until sometime between 18 months and her second birthday. The child, that once had been a show stopper, now behaved so badly in pubic people scowled, turned away, or worse, with ignorant verbal assaults, condemned my daughter as a bad parent.

It was during that visit to Washington when I first began to notice something was different about Millie. When taking groceries from the car, it was imperative Millie either remained in her car seat or sat atop the hood of the car until someone was able to firmly hold her hand and walk her into the house located just a few feet from where the car was parked. Millie did not follow. Millie ran! She ran with total abandonment as fast and as far away from her family as her tiny legs would take her. We later learned this behavior is defined as “eloping” and is not uncommon among autistic children.

photo_millieredcarOur little eloper temporarily “grounded”
on the hood of our car.

At the time, though it was distressing to have Millie run away at every opportunity, we were able to quickly catch her and tended to make light of it. We thought it was just a little game she played with us and, with correction and time, she would stop. She did not stop and “terrifying” only begins to describe Millie’s eloping episodes.

There were many, but the one that stands out in my mind is when she managed to stealthily slip from her bed, unlock two doors and disable an alarm to run half naked more than a mile to a highway where, by God’s protective grace, she was corralled by cars and rescued by a State Trooper. Imagine with me for just a moment what it was like for my daughter and her husband to receive that phone call. Their anxiety, anguish and relief at Millie’s safe return was indescribable. Imagine their humiliation, helplessness and frustration in being reported to Social Services and, for a time, having being suspected of child abuse. For years after the highway incident, in addition to bolts, locks and alarms, my daughter pushed a couch in front of her door before she went to bed each night. The couch was the only piece of furniture heavy enough that Millie could not move it. The entire family lived in a prison and slept under conditions that Millie’s great grandfather, a fireman, would have decried as beyond hazardous.

Thankfully, with help, my daughter and her husband were eventually able to develop sleep patterns for Millie that ensured her safety and their sanity. Millie is still an early riser, but now at age 14 walks with us and delights in a stroll along the beach.

photo_milliebeach

If you suspect you may have an eloper or that your child may be autistic:

  • Take immediate action! Children do not “outgrow” autism, but studies show that early diagnosis and intervention lead to significantly improved outcomes.

A Makeover For Millie’s Place

My daughter Laurie and I could hardly believe our eyes as we came to a stop in front of Millie’s group home. A gang of men and women with paint and crow bars in hand, were tearing apart rooms, ripping out electric wiring and destroying flower beds! Normally this would have been cause for us to reach for our cell phones and begin dialing 911.  Instead, tears of thankful joy sprang to our eyes as we were greeted by members of Old Fort Baptist Church, Summerville, South Carolina who had come to repair and renovate Millie’s home.

Looking around we were overwhelmed with the amount and quality of work being accomplished.  Our expectations were for a bit of paint and perhaps some new carpeting.  What we saw was: a new washer and dryer being installed; walls patched and spackled in preparation for  painting; deep cleaning taking place in every nook and cranny; bathrooms being refitted and the kitchen ceiling in mid-replacement.  Outside, a power washed sidewalk glistened in the sun where a disheveled handicap ramp once stood. Long neglected hedges were weeded, trimmed and watered while a post hole was dug for the installation of a new mail box. We had to make way as another group removed the rusty remains of a swing set and laid the foundation for an up-to-the-minute recreation area.  The hive of activity was overwhelming!

What makes people rise on a precious Saturday morning to labor intensely on a project for which they will see little, if any,  personal return?  Some would answer in tones of cynical dismissal they were just a bunch of hypocritical do-gooders on a glory grab trying to make themselves look good.  Others see good works simply as a civic responsibility; they do what needs to be done because it is right and proper and has an end result of promoting the common good. Some, holding to the idea of man’s inherent goodness, would claim such activities flow from man’s natural desire to help their fellow man.

But men are not inherently good. I do not have to teach my grandchildren to lie or cheat or disobey their parents.  They come to that on their own. Left unchanged hearts give way to selfish desires and good works become both bothersome and unappealing. Worse, they can be abused, seen as the means to a selfish end and performed with ulterior or sinister motives.  Genuine goodness does not come naturally and is not its own reward.

Fortunately, there is a difference in good works performed by those motivated to be an active, living demonstration of God’s character and love. Those involved in service of this sort are neither interested in impressing men or trying to win favor with God.

I saw this difference in the eyes of those helping make Millie’s home a better place to live and believe one day Christ will say to them, “Enter, you who are blessed by My Father.  For inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me”.

P.S.   To our utter surprise and delight Laurie and I have received a note of thanks from the members of Old Fort Baptist Church for affording them the opportunity to live out their faith in such a meaningful way.

A Real Field Of Dreams

MillieAtBat320The Miracle League volunteers working with Millie and her friends ensure everyone has a great time. The pitches are perfect and no one ever strikes out. When the bat and ball connect, a roaring cheer goes up from the stands and wheelchairs, walkers with crutches and runners with gate problems make their way from base to base with the excitement and enthusiasm of major league playoff.

Sometimes players need a little extra help but with a “Buddy” every player makes it to home plate and everyone leaves a winner. “Buddies”, pair up with players to help Millie and her teammates play the game. When necessary, they help bat and ball connect, run bases (sometimes with their player in arms!) and give high-fives and hugs when the umpires call them “safe”.

The Charleston Miracle League field is a specially designed, million dollar, state-of-the-art baseball facility that is truly a “field of dreams” for Millie and her friends. These kids and the volunteers who work with them make everyone proud, from their Red Sox sponsor to grandparents like this one. So let’s play ball – and go Red Sox!

Check out the Charleston Miracle League at their website:
https://volunteer.united-e-way.org/trident/org/10259694321.html

Resources/Links

Where to spot white squirrels:

My friend, Linda Ely, designs my books, does all my graphic art work and photo restorations!
lindaely@aol.com

Another friend, Chris Harrison designed this beautiful website! chris@cdharrison.com

And Bill Swanson acts as webmaster continually updating and maintaining this site.
bill@exactingdesign.com