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Tuesday, December 3, 2013

Guest Post: William

We are so excited to share with you our first ever guest post on CHART. Inviting a guest author to write for CHART had actually never even crossed my mind until the day I heard Jeff Hall tell the story of his son William at an ASNCOC coffee. Everyone in the room was spellbound as Jeff described the journey that his family has taken with William, and how they finally came to peace with a very difficult decision they had hoped never to make. Jeff very graciously agreed to share his story here with you, and as he tells it better in his own words than I ever could, here it is:

William
All photos courtesy of Jeff Hall.

3 years and 31 days ago, I made a decision that I swore I would never make. I dropped my firstborn son off at a state run program in a mental hospital, admitting to him and to the world that our family was no longer the best place for him, and that someone else was better equipped to meet his needs than my wife and I. 

I institutionalized my son.
____________________________

William was always special. He was born on New Year’s Eve 1998, our second child, our first boy. He had big blue eyes and blonde hair. He was a big, round ball of chubby cuteness.

By the time he was 9 months old, he hadn’t started babbling yet. He loved being in his swing. A lot. Like all the time. Hours at a time. The motor burned out. He loved his pacifier and would not sleep without it.

By the time he had his one year checkup, Barbara was concerned enough about his development to ask the pediatrician about it. It’s all good, the doc said. Boys are different than girls. Rates of development differ. Nothing to worry about. Barbara said, yep. I know all that. But something isn’t right.

She got up and left the office. A few days later she was at another appointment and saw a flyer on the wall. The poster was for Project Child Find, which was offering a free screening for kids like William. Kids who were different.

William would get a screening, and by the time he was 18 months old he had attended his first therapy sessions for what was being described as sensory integration and pervasive developmental disorder. Disorder. It hurt to hear. The first time we would hear that William wasn’t just different, he was abnormal. Wrong.

At least that is how I heard it.

As he got older, there were more therapy sessions, and groups, and talks with doctors. When he was 2½, he was in a group with 4 other kids. The group met with their therapist in a special room at Womack Army Medical Center (we lived on Fort Bragg).

The other kids in the group were like William. They didn’t make eye contact. They flopped and flapped. They became agitated if one of their toys was taken. We began talking to the other parents who joined us in observing the group behind the two way mirror. It was a conversation that special needs parents will recognize. You see, not unlike elementary kids comparing Pokemon or middle schools boys talking football teams or high school kids talking about whatever the hell it is they talk about, we special needs parents compare diagnoses.

“Is that your son?”

“Yep, red shirt. Your daughter?”

“Yes. Pink boots. What’s your son’s diagnosis?”

“PDD and sensory integration. Yours?”

“Autism.”
We asked another parent. Then another. Then another. Autism. ASD. Autism.

Of course, that was not something we had to worry about. The therapist had told us that William didn’t have autism. He was just in this group because he had a “commonality of challenges.” He wasn’t autistic. I mean, I had seen Rainman. William couldn’t or wouldn’t talk, much less do amazing math tricks.

Daphne, the group leader, had clearly seen parental denial before. She was very patient. She had a suggestion. I have something I would like for you to fill out she said. It is called CARS — the childhood autism rating scale. Fill it out, and we’ll talk about it.

When we got home, we filled out the form. You could almost hear the ominous movie music playing in the background as we marked 4 after 3 after 4. We looked at one another, coming to the same conclusion at the same time.

William’s got autism.

And we have a lot to learn.
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Fast forward a few years. We are world class autism experts. We became ace advocates. William was the first pre-K student with special needs at Fort Bragg to get a full day program WITH a one-on-one aide written into his IFSP. By school age he moved into a self-contained classroom and had amazing teachers and therapists.

But our life was ruled by autism.

William didn’t sleep. He didn’t talk. He wouldn’t potty train. When we went to McDonald’s as a family we always had to take extra money, because it was inevitable that William would walk up to someone’s table and take their french fries. If it was a sit-down restaurant he would start fussing and whining as soon as we sat down. He didn’t understand why the food wasn’t there. Eventually we stopped going out.

There were so many things that we couldn’t do. Go to church together. Sit and watch our younger son’s soccer game together. Attend birthday parties.

All of our plans were subject to William’s mood, whether or not staff was available and whether we could afford to cover them.

All of this was complicated by something else.

Army life.
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Life with William was hard. Lots of time, lots of hospitals and therapists. Not enough time for each other or our other kids. Constant worry that we weren’t doing enough to help William deal with his challenges, weren’t giving him enough.

But we had love, and we always found ways to laugh. Many days our life was good, and when it was we would smile. Because although life was challenging it was what we knew. And when William smiles it can melt your heart and light the room.


William got really worked up when it was time for me to go. When he saw the bags come out for another one of dad’s deployments the tantrums would start. You could see the anger and frustration build. I would pack and worry and wonder what would happen when I was gone.

I would head off to combat and Barbara and the other kids would prepare for their own kind of war.
__________________________________

We would purposely leave room on William’s medications so that when I deployed we could increase his meds. We would try to make sure that we had staff lined up, that teachers were told when I would be leaving.We would talk to the kids, and prepare them.

We tried to explain, and tried even harder to understand, that William was already dealing with things that made him feel overwhelmed. He was bombarded with lights and noises and textures that made just functioning day-to-day a challenge. His brain couldn’t make words to express what he felt on the inside and his feelings could only be expressed physically.

When we were all together he could sense that the world was difficult but somehow right, and that he was loved and supported.

But we weren’t all together. Because I had to leave.

Afghanistan. Iraq. Uzbekistan. South Korea. Even 6 months in New Jersey. “Garden State” my ass.
I was gone all the time. From 9-11 until I left the military in 2007 I was home for 20 months.

While I was gone playing Army games, at home all hell would break loose. William would be easily angered, and physically lash out at whomever was nearby. He bit and banged his head and destroyed furniture. We still hesitate to buy nice things.

In 2007, it was time to leave again. I was part of a team that would be training the Iraqi army. I had to attend 7 months of training at Fort Riley, Kansas before I deployed for 18 months. Two years away from home.

It started like it always did. The bags. The fussing. The fear.

But it wouldn’t end that way.
__________________________________

I had just arrived back at the barracks at Fort Riley from a day of training. My cell phone buzzed. It was Barbara, calling from home.

“Hey babe. What’s up?”

“Same old. I just wanted to give you a heads up.”

“About what?”

“I made a video.”

“Of what? or do I want to know?” (My attempt at cuteness. I am charming.)

“Ha ha.” (This isn’t a laugh. She actually said ha ha. She is immune to my charm). “It was of Willie. Having a meltdown.”

“Okay. What did you do that for?”

“To get people’s attention.” (Her statement felt heavy. Like she really, really meant it this time.)

“What people Barb?”

“I sent it to the Governor, all of our representatives, the Senate Armed Services Committee and your chain of command from battalion all the way up to theater commander.”

“You did what now?”

Before she could answer my phone buzzed again. My team leader. I clicked over. Meet me at the battalion commander’s office. He said we have to talk now. Do you have any idea what this is about? I might, I said. Well meet me there now. I clicked back over. I gotta go. Shit just got real.

We walked into the battalion commander’s office. We had been there lots of times, mostly just hanging out. I walked in and made a beeline for his couch, my favorite spot.

“Don’t get comfortable. We are going to see General Ham.” (Major General Ham was Division Commander and would, in a few years time, be in charge of all American ground forces in Afghanistan.)

We loaded into his Humvee and headed to Division headquarters. We went to General Ham’s office and were escorted into his conference room by his aide. General Ham was seated at his table with his assistant Division Commander.

“SFC Hall, welcome. Come on in. Have a seat. Do you know why you are here?”

“I have an idea, but I am not completely sure sir.”

“I got a package in the mail today. It was from your wife. You know what was in it?”

“A video.”

“That’s right. A really powerful video. Very moving. Have you seen it?”

“No sir. I only heard of its’ existence about 20 minutes ago.”

“I see. Could we cue up that video please?”

His aide dimmed the lights and pulled down the video screen. The computer flickered and the video came up:



As the video came to an end I was close to tears.

There he was. My baby boy. Struggling to make sense of a life impacted by a differently wired brain and not understanding where I was, or why I was there. I wasn’t even sure that I knew anymore.

And I heard him in my mind. Daddddaaaaddddddaaaa.

“What do you think?”

The question jarred me back to reality.

“I am not sure I understand your question, sir.” I had a lot of experience dealing with senior officers. I was not used to personal questions from them. “What exactly are you asking me?”

“What do you think about what you saw?”

“I think that it was hard to watch, and I wish I was at home sir.”

“You have a stellar record. What do you want to do?”

“Again, sir, I am not sure I understand the question.” What the hell? What is this crazy old coot getting at? What does he mean what do I want? No one has ever asked me that in 12 years of active duty. “What exactly do you mean? Sir?”

“What would you say if I told you that I could get you out of the Army in a week?”

“I would say yes. Please.”

“That is all I needed to hear SFC Hall.”

It took a little longer than a week. It took three. And a trip back to Fort Bragg.

But 19 days later I went from Fort Riley, Kansas preparing to go back to war for the third time to a rental house on the north side of Fayetteville, learning how to be a stay-at-home dad.
________________________________

By mid-2010 we were nearing the end of our rope. We had spent over a decade with William, meeting every need and foregoing every small sanity taken for granted by most parents.

Sleep. Family outings. Furniture that didn’t need steel reinforcement.

We had been to IEP meetings and case management meetings. We had discussed Williams strengths (he can be a very loving child, a charmer with a great smile, and he is very smart!) and his weaknesses (when he gets upset he will beat your ass like you stole something and ran from the cops).

We were free from the constant worry and stress of life in the military.

But William was never, IS never, free from the prison that autism has created in his mind.
We heard about a program. Partners in Autism Treatment and Habilitation at Murdoch Developmental Center in Butner, NC. A state run program that was specifically designed to give kids like William the support, structure and care that they needed to thrive.

A state run mental hospital. An institution.

No matter how bad things got with William, I always swore we would never institutionalize him. No way some government agency knew better than we did. No way I would warehouse my kid in some foundling home out of Dickens. We would care for our boy. We were his parents, for God’s sake! Who knew better than us how to care for our boy? How to love him?

Of course, I had on some Ray-Ban quality rose colored glasses. I hadn’t been at home when William was at his worst. I hadn’t been bit, been scratched, been hit with balled up fists of rage wielded by a boy who was already 5-2 and 140 at 11 years old and got bigger every day. It was easy for me to say no institution was necessary.

Barb’s bruises said something different.

______________________________

We learned more about PATH. We talked to other parents that had made this impossible decision. We filled out the application, at first expecting that William would do a 90 day respite placement. When we were told he was a good candidate for the regular, two year program we amended our application.
We needed help.

It took a few months and a lot of paperwork, but William was admitted to PATH in October 2010. His “move-in” day was 1 November 2010.

We drove to Butner and explained to William and our other 3 children what was happening. William was going to autism college, we told them. A special place that existed to meet his needs and care for him 24 hours a day, 7 days a week. In ways that we couldn’t. A full time nurse and behaviorist and dietitian. School in house. On site case manager. Therapists interacting all day, every day. Trained people always on call, always there.

Always rested. Always prepared. Always energetic.

William’s younger brother wasn’t convinced.

“Autism college? Sounds like autism jail.”

But we persisted. Despite the doubts of the neurotypical children. Despite our own misgivings.

Maybe it was desperation that drove our decision. Maybe it was fatigue. But when we had our first visit with William 6 weeks later (they had asked that we give him time to adjust), all our fears evaporated.

William was smiling. Happy. He looked healthy, rested. He had lost weight, and gotten taller. The combined effect was that our baby had grown into a young man over night. He even had a little peach fuzz.

After a year at PATH, 4 psychotropic medications had been reduced to one. Clonidine, the first medicine that William had gone on and the only way we had to know he would sleep had been the first medicine eliminated. He went to sleep on his own every night by 9pm, and slept until 6am, when his daily routine started.

He was paying attention to tasks in school. He had reduced his angry outbursts. He hadn’t bitten anyone since the day he arrived.

His life was scheduled in 15 minute increments. He knew when dinner was, when school was, when therapy was. He was expected to set the table, fold his clothes, and wash his own body.
 
By a year he was potty trained.

As William grew, so did we. We had dinners out. Played family games. Had nights where we sat downstairs together and watched “The Amazing Race” and made s’mores in the fireplace and talked and laughed and were a family. We weren’t constantly listening for the back door to hear if William had snuck out. We weren’t waiting for him to get mad or wake up or need attention.

We just were.
He was happy. We were learning. We all adjusted.

Everything changed. Everything.
__________________________

William lives in a group home in Statesville, NC now. It is a beautiful house in a quiet neighborhood with a big backyard, a trampoline, a basketball hoop and an industrial strength swing set. He has his own room with a flat screen TV (thanks Nana!), DVD player and cable.

His day is still broken into 15 minute increments. He lives with 5 other young men, including one that was at PATH when he was. He misses us, I know, but he loves his friends and loves his house. If he had his way, we would live at his new home with him. All of the structure, all of the security, the world revolving around his needs. But with his family as a nice distraction.

We see him every couple of weeks, and every month or so he comes home, back to Chapel Hill, for an overnight visit. He gets to eat cereal, drink soda, stay up late and generally break all of the rules he has to follow at his group home. We get to let him.

He is happy to be at home. For about 24 hours. Then he wants to go back to Statesville. He brings us his backpack and leads us to the door. I need the structure he seems to say. I need a life that meets MY needs. Take me home.

We pack up and we take him home.

When we leave there is silence in the car. We are all sad. Our 6 piece band is missing its most unique and different piece. The part that makes us, us.

But we know that William is happy. And that we have done what is best for him and for our family.

The tears are dry by Greensboro. And by Burlington the jokes are flying and the putdowns are stinging and the parents are begging people to stop cussing “just a little. I mean damn.”

We are a family in two places. Six people. One heart.

And no matter what happens, or where he is, we know that we will always do whatever it takes to make Willie smile.

_________________________


Read more of Jeff Hall's incredible writing here. Learn more about the Murdoch Developmental Center here. Thanks again to Jeff for sharing his story, and thanks to all of you for reading.




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