VOICES FROM THE EDGE: MOM, MAKE IT STOP!

 “I wish it would stop,” says Allen.

 There are tears in the corners of his eyes as he leans against the door-frame of my office. The conversation has not been easy: two of his least favorite subjects are work and therapy. It has taken us 45 minutes to sift through denials, defenses, and deterrents, but I have been determined and patient.

 “I’m just angry a lot,” he says, and I nod. Just last month I needed to replace his bedroom door, which had taken abuse for years. “I’m angry that I was in school for all those years—ALL THOSE YEARS—and not one person said anything about autism! Not one! Yeah, they said I was different and quirky and stuff, but no one said autism. And I want to know why. Cause now I know I have it and I just don’t know what to do with it!”

I clench my fists. I, too, am angry about it. Allen was diagnosed at age 3 with learning disabilities caused by high blood ammonia. He spent his school years in the special education classrooms, struggling to keep up with his age-mates. Every year, I participated in the IEP conference to set his goals. And during the 12 years of his public schooling and the 4 years of college, no one mentioned autism. Not once. According to the Asperger’s/Autism Network, adults who receive the diagnosis often deny it or express anger that “no one ever told me.” The site did not mention how their parents feel.

But I am plowing ahead with my end goal; I figure I have enough good will chips with Allen to either convince him to see a therapist or continue to go to work. I talked with his sister yesterday and we agreed that, for the time being, helping Allen become more aware of his strengths and his needs for accommodations place therapy above work. For two years, he has been receiving disability benefits and they will be enough to keep up with his car and insurance payments for the time being.

I’ve made this confession to my daughter and my best friend: I want Allen to be normal. Having a job he goes to everyday makes him normal. I already have enough “not normal” in my life with a husband whose physical disabilities put him out of work 18 years ago. I crave some normalcy.

But God, in His infinite wisdom, has blessed me with a son who resides on the upper edges of the ASD spectrum, a place sometimes called High-Functioning Autism (HFA). It’s a different plane from the one that I live on. I spent Allen’s childhood helping him find ways to learn, not preparing him for life as an autistic adult.

“I just want it to stop,” says my son. “Mom, just make it stop.”

My heart breaks a little. I wish I could make it stop for my blue-eyed baby boy. I take a deep breath, whisper a prayer, and tell him how wonderful and creative he is.

“Unique,” he reminds me. “You always said I was unique.”

I smile a little. “We are all unique. We just need to learn how to use it.”

He nods, thinking. I let the wheels in his brain turn, praying that I am somehow getting through to him.

Allen is not alone in his adult diagnosis. According to Advancing Futures for Adults with Autism (2017), 1.5 million people in the United States are on the spectrum, with the possibility of what is sometimes called “the autism Tsunami” in our near future. As in Allen’s case, employment and education is not really a matter of lack of ability or intelligence, it is a lack of available services and public understanding. The phrase, “If you know one person with autism, you know one person with autism,” is very true. As a spectrum disorder, it takes many forms. And communicating with someone on the spectrum is full of pitfalls such as perception deficits, abrupt transitions, and echolalia (Asperger Partner, 2016).

A few tears have fallen by now but Allen’s determination to avoid therapy is waning. We have agreed to refer to his new therapist, Dana, as a “career counselor” rather than a therapist. “Because you need someone to help you sift through all your wonderful ideas and see which one you should work on first.” And because, I think to myself, you need someone to talk to other than me. The role I play as Allen’s mother is exhausting.

Allen is quickly running out of steam, so I make one last plug. “If you need to quit your job,” I say, “It’s okay. You need to do what’s best for you.”

He cocks his head to the side. “I guess I don’t mind the job so much,” he says. “Not as long as there is work to do. I just don’t like doing nothing.”

 My brain is already turning with how we can address this situation.

 Then Allen, who often surprises me, says this: “Guess I can talk to Dana about it.”

Then he heads to his room for a nap and I, feeling as if I have run the gauntlet and come out the other side, go downstairs to make supper. And treat myself to a cup of tea and a cookie.

Unto Us, a Child

Isaiah 9:6-7New King James Version (NKJV)

"For unto us a Child is born,
Unto us a Son is given”

She kissed the face of her son. She was making a sacrifice—a huge one—but she never hesitated, never stopped to question, never doubted in the perfect plan of God that had brought her to this moment. Even as the loss of her son, God’s greatest gift to her, hung over her heart, she knew it was the right thing to do. Whatever befell her, his mother, was far less important than what would happen to her son.

It’s the way most mothers feel.

On December 19, around 10:55, Patrick Collins was wheeled into the operating room to receive a liver transplant from a living donor. And Annette, his mother, settled onto her own gurney. Having given him the gift of life sixteen years ago, Annette was now the living donor that would provide Patrick with a large part of her own liver so that her son might live.

Think about another mother, thousands of years ago, laying her newborn son onto a manger’s hay. The shepherds, having been visited in the quiet hills by angels, had come to worship the Child and gone on their way, spreading the word to all they encountered about the miracle that had taken place in Bethlehem (Luke 2:17). More people—rich and poor alike—would come but for a little space of time, Mary held her Son tightly, rocking and singing a lullaby. Perhaps Joseph had gone off to look for food for his family, passing among the other travelers and explaining the situation. My wife has just had a child. Can you spare a blanket? A loaf of bread? A flask of wine?

Alone in the stable, the animals all hushed in awe at the events of the night, Mary “treasured all these things and pondered them in her heart” (Luke 2:19).

“To ponder” is to think carefully, especially before making a decision. What decision did Mary need to make? She had already agreed to bear God’s Son, to be the “handmaid of the Lord Jehovah” (Luke 1:38). She already knew that He would be called the “Son of the Most High” (Luke 1:32) and that His Kingdom would have no end (Luke 1:33).

But did she know about the Cross? Did she know that the tiny being she held in her arms would need to sacrifice His life? Did she know that as the blood ran from His wounds her own heart would break? As she laid the sleeping Child in the makeshift crib, did she know that she would hold His still body in her arms when sin’s debt was paid?

Mothers ponder many things.

For Annette, the pondering began when Patrick was born with Pierre Robin Syndrome and intellectual disabilities. Would she be up to the challenge of mothering a special needs child? Would she know how to teach him, how to love him, how to give him the life she wanted him to have?

Annette said yes. Yes to all the added burdens the mother of a special needs child has to carry, yes to the medical bills and school services and unending tiredness. And, a few months ago when it became apparent that Patrick’s liver had suffered irreparable damage and would need to be transplanted, she said Yes to being his living donor. Annette, now home from the hospital, has 6-8 weeks of recovery time ahead of her. Both mother and son are recovering well and the family anticipates that Patrick will go home on December 26.

Mary, the mother of Jesus, also said Yes. Nowhere in the Bible does it tell us of Mary’s thoughts as her Son “grew in wisdom and in stature, and in favor with God and man” (Luke 2:52). But we know she was by His side as He began His ministry. We know that she was at the Cross when He gave His life. And we know that Jesus asked the disciple John to care for His mother as his own (John 19:24).

Mary loved Jesus.

Annette loves Patrick.

Unto us a child is given. And when we are given a child, no matter what the future may hold, we rejoice.

And, because God has given mothers the right amount of love and caring, we do what needs to be done.

We say "Yes."

A Blessed Christmas to You All, and a Speedy Recover to Annette and Patrick!

PATRICK: JUST A LITTLE BIT OF MAGIC

Patrick needs a bit of magic. Not a whole piece, mind you, just a wedge-shaped piece about 3 inches by 3 inches, a piece of magic that will fit into the space above his upper right abdomen, and help his body process nutrients and remove toxins. It doesn’t seem like a lot to ask, particularly since the little bit that Patrick needs will grow and repair itself. But to Patrick and his family, this piece will be the magic that will allow Patrick to grow and survive.

Patrick needs a liver. Not a whole one, because the liver itself is rather magical, its ability to rejuvenate unusual among the organs of the human body (Columbia School of Medicine, 2017). Patrick needs a piece of liver from a live donor, a piece that will take the place of his own damaged liver.

Patrick’s story begins the way most stories do, with a “once upon a time”, and a mother who noticed that her son at age sixteen was not growing normally and had not yet entered puberty. That led to a visit to the Children’s Hospital of Philadelphia (CHOP) and an endocrinologist who found Patrick had “high inflammation” in his body and sent him to a gastroenterologist, who found masses on Patrick’s liver and determined that ¾ of his liver was damaged beyond repair. Specialists at the University of Pennsylvania Hospital determined that the non-cancerous masses could easily become cancerous.  They urged that Patrick’s liver be removed.

But the remarkable liver processes 1.5 quarts of blood every minute and is vital in the process of digestion. It clots the blood, preventing internal bleeding, and produces proteins. And getting a donor liver can involve a long wait, a wait Patrick can ill afford.

But Patrick only needs a LITTLE bit of magic, and a little piece of liver. According to WebMD (2017), a living donor can give up to 40% of a liver, and the remarkable and almost magical liver will, within a year, regenerate to its full size. And the 40% given to Patrick will also, in the same time span, grow to its fullest dimensions.

Live liver donation was pioneered at Columbia University in the 1980’s to alleviate the long wait of pediatric patients. Currently, the survival rate of both adults and children who receive a live liver donation are better than those who receive a liver from a deceased donor (Columbia University, 2017).  And live liver donors need only be in good general health, have had no upper abdominal surgery, have a blood type compatible with the patient, and be between 20 and 50 years of age.

Patrick’s blood type is O+, so his donor needs to be O- or O+. In the United States, 45% of the population has O type blood. That’s a lot of potential magic for Patrick!

Patrick’s insurance would cover all the medical costs for the live liver donation. The family lives in the Philadelphia, Pennsylvania area and hope to find a donor in the vicinity. Annette Collins, Patrick’s mother, can be reached at atcollins78@gmail.com if you would consider being Patrick’s donor.

Patrick and his family need a little bit of magic. And they know that somewhere there is someone with a bit of magic to spare.

You can find out more about live liver donation at https://www.americantransplantfoundation.org/about-transplant/living-donation/about-living-donation/living-liver-donation/

And you can contact Annette at atcollins78@gmail.com.

Love,Annette, Mike, Patrick, and Michael Collins

GOT FIVE MINUTES?

Got Five Minutes?

By Letitia Suk

“Take five minutes to pray for your work each day and see what happens,” was the challenge proposed by our pastor to the congregation years ago. I remember thinking something like, “Duh!” Of course, I already pray at least five minutes a day for my work...don’t I? Surely all the praying-on-the-run I did each day for all the flying curveballs added up to more than five minutes.

The nudging continued so the next morning I grabbed a timer on the way to my prayer chair, set it for five minutes and began to pray specifically for my work. Wow, that timer took a long time to ding! Challenge accepted—I was ready to see what would happen.

Like many of us, my work is multi-faceted. So I decided to give a minute to each of the five areas for my day-to-day projects. It seemed like one minute would be easier that five. I know, wimpy, right?

The first minute I gave to my coaching clients. They invested time with me to bring focus and intentionality to their lives and I wanted to give them my best work. My writing got the next minute. The current projects, the longed-for projects, my skill and wisdom in putting words on a page. Good thing the timer rang because it was easy to zone off into work mode instead of praying.

Speaking ministry was next. Events already scheduled and those I wanted to schedule. For my communication skills to grow and for lives to be changed. A lot for one minute.

My part-time chaplain work got minute #4. Patients, sensitivity, staff and overall blessing for the hospitals.

The last minute I saved for specific work stuff on that day’s agenda: marketing, blogging, networking. This time the five minutes flew by.

He was right—things happened! I felt more partnered with God in all aspects of my work. Not just that I was working for Him but with Him as I laid the concerns out each day. I saw clearer productivity and greater results.

All these years later, I still set my timer most days. My work depends on it.

Each day holds 1440 minutes...hard to claim a legitimate excuse for not finding five of them to invest in prayer over your work. You might be amazed at the return.

P.S.—The same five-minute principle works for other areas of your life too!

ABOUT

Letitia (Tish) Suk, www.letitiasuk.com, invites women to create an intentional life centered in Jesus. She blogs at hopeforthebest.org and authored Getaway with God: The Everywoman’s Guide to Personal Retreat) and Rhythms of Renewal. She is a speaker, personal retreat guide, and life coach in the Chicago area. Find Tish: https://www.facebook.com/Letitia.Suk.Author/

VOICES FROM THE EDGE: THE HERO SAYS GOOD BYE

To everything there is a season, and a time to every purpose under heaven. Ecclesiastes 3:3

I'd seen her on Sunday, asleep on a pile of laundry in the basement, but she failed to show up for morning milk on Monday. Butterscotch, Bonnie's orange cat who still lives with us even though his owner has married and moved, jumped up onto the table and lapped up the milk.

"Did Sugar sleep late this morning and leave all the milk to you?" I asked the cat. He gave me a mournful meow. I patted him on the top of his head and chucked him under his furry chin, in a hurry to get Ron's breakfast and medications doled out before I headed off to work. I wasn't worried; Sugar was an adventurous little cat, often exploring boxes in the basement and too busy playing to come to meals.

But she did not show up the next morning, either. Gently, I suggested to Allen that we look around for her. Perhaps she had gotten trapped in a box of Christmas garland and couldn't get out. He gave it a half-hearted attempt, going down the basement steps and calling her name for a few minutes. He came back up and shrugged. "She's not answering me," he said.

I began to worry, not only about our missing cat but about her owner, my son who lives on the upper edges of the ASD spectrum and has a difficult time processing emotions. Often, the reality of the world is incomprehensible to him. How could I tell him I feared his cat had died?

Butterscotch kept up his mournful morning meow while devouring the bowl of milk, and I tried to suggest to Allen that Sugar might not be coming back. By Wednesday, my son convinced himself that Sugar had somehow gotten out of the house. With the influx of medical personnel who cared for my husband while I was at work, it was a possibility. We began to search in the bushes and under the deck, shaking a bag of her favorite treats to tempt her out. We left food and water outside, just in case.

There was still no Sugar on Thursday, and I did a little Google searching on the habits of cats. I was comforted to know that cats have no knowledge, and therefore no fear, of death. If, as I suspected, Sugar was now over the Rainbow Bridge with my little Cocker spaniel, Taffy, she was happy and content. There was nothing I could do for her. My job would be moving Allen past the loss of his beloved pet.

Like others on the ASD spectrum, Allen finds social situations stressful. He has only a few friends, and comes home from work each day exhausted from functioning in an environment he only partly understands. His cat, Sugar, has been his companion into adulthood, serving as his confidante. If he had a tough day, Sugar could be counted on to simply curl up on his lap. Patiently, she tried to learn the tricks he thought she should know. She, unlike humans in his life, simply accepted him for who he was.

Friday there was still no sign of Sugar, but I had managed to help Allen accept three possibilities: she was hiding in the basement and only came out for food and water at night, she had fallen asleep in the basement and passed quietly away, or she had gotten out of the house and gone to join the alley cats at the fire house. The last possibility was Allen's suggestion.

On Saturday, armed with flashlights, he agreed we should conduct a full-out search. And it did not take long to find her, huddled around the heater in a dark corner of the basement. Sadly, we wrapped her in a quilt and put her in a plastic box. I carried the box to the back deck and weighted the top down with bricks.

I took a deep breath and asked Allen what he wanted to do. Bury her? Cremate her?

But Allen was still holding out slim hope. "I don't think that's Sugar," he said. "I think it's another cat who took her place."

"Okay," I said. "But we still need to take care of her."

He shrugged. "I don't care," he said. "Do what you want."

What I wanted was to have someone else handle this, but since that never works out, I called the Royal Pet Crematorium, the place that had helped me deal with Taffy's loss. I arranged to bring her down on Sunday and carried the box to my car.

Around 9 PM Saturday night, I was attempting to read--but continually thinking about the little cat that had been our friend for so long--when Allen crept quietly into the room and sat down beside me. 

"I want her ashes," he said. 

"Okay."

"And a little cylinder with some ashes, like you have for Taffy."

"Okay."

He buried his head into my shoulder. "She was a good cat," he said.

"Yes," I said. "She was."

His voice dropped to a whisper. "She was MY cat."

And our arms around each other, we cried.