This Poem Sums Up What It Feels Like To Be a Parent to a Child With Autism

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I’m on the outside looking in.

And although I’ve been here awhile,

You never really get used to it,

It just becomes your lifestyle.

It’s a different kind of existence.

One that requires a unique type of persistence.

On the outside looking in,

And what do I see,

Lots of children talking,

Their voices sound so sweet.

But my child is silent, no words does he say.

It’s like a part of him is locked away.

On the outside looking in,

And I can’t help but stare

When I see children say they’re hungry or thirsty,

Or tell their parents when they’re hurting somewhere.

But my child’s moans are really all the same.

And so I’m forced to continue this exhausting guessing game.

On the outside looking in,

And when I look around,

I see children singing along to songs,

Their voices abound.

But no melody from my child will you hear.

It makes me wish I could just disappear.

On the outside looking in,

In a state of woe,

As children wave their hands,

To say goodbye and hello.

But my child does not yet know how to greet.

Just another reason I feel the urge to retreat.

On the outside looking in,

I gaze enviously,

As parents give directions to their children,

And their children understand them clearly.

But my child doesn’t comprehend most of what I say,

For him, the simplest concepts are so difficult to convey.

On the outside looking in,

I watch with jealousy,

As children point to whatever interests them

Little hands exploding with intensity.

But my child’s hand stays at his side.

It’s not even something I’ve seen him try.

On the outside looking in,

Tears rolling down my face.

I wipe them away as quickly as I can.

All signs of melancholy erased.

I try to maintain a tough facade, pretend I’m too strong to weep,

Instead I fall apart at night, when my house is dark and all are asleep.

On the outside looking in,

Surely the others must see me

And have some compassion,

At least to some degree.

But unfortunately it seems as though

Very few have any sympathy to show.

On the outside looking in.

Never feeling like I truly belong.

Yet I continue to try to fit in,

Why do I insist on playing along?

I only walk away feeling defeated and more alone.

It’s not something I can continue to condone.

On the outside looking in,

It’s such a lonely place,

I look to the left and right of me,

But there’s no trace of a single face.

I’m always searching, unfortunately to no avail.

Hoping maybe this time, my search will turn up a trail.

On the outside looking in,

It’s not where I chose to be.

It could’ve easily been you and not me,

On the other side of the door without a key.

“This could never happen to my child!” you might’ve said,

But no one can tell what lies ahead.

You just might find yourself where my story begins,

On the outside looking in.

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How My Father’s Brain Trauma Inspired My Business

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At some point in your life, you will receive a phone call that will change it forever. When my phone rang one morning in 2005, and I heard my brother’s voice on the other line, I knew I was receiving “the call.”

“Robin, Dad suffered an accident this morning.” The tone in his voice was incredibly grim. “He slipped on some black ice and hit his head in the fall. The injury to his brain is traumatic and his prognosis is bleak.” I hung up the phone, without saying or thinking much, and got myself to the hospital to be by my father’s side.

Anyone who has ever had a loved one in the ICU will tell you what a difficult time it is. While they lay there, hooked up to a series of machines and IVs, your system tends to go into shock. At first, I became as helpless as my father literally was. Then I became frustrated. Frustrated that this happened to him and frustrated that I could do nothing aside from hold his hand as he remained in a coma. Each day the doctors would deliver the same discouraging news, and I watched as my family become more and more hopeless. I knew I had to do something.

Fueled by the need to help my father, I began researching possible modalities outside the realm of western medicine. We utilized acupuncture, which helped him to open his eyes but that wasn’t enough. My father was still unaware of his surroundings and was a sick man.

One day I grabbed his feeding tube can, read the ingredients and became appalled by what was being pumped into his system. As I saw it, this wasn’t food at all but rather a liquid mixture of sugar and chemicals. I believed to heal, he needed whole foods nutrients, so I set out to make sure he received them.

When I couldn’t find any whole food alternatives to traditional feeding tube formulas, I took to the kitchen and began developing my own. Liquid Hope, as my family fondly dubbed it, is an organic blend of the best, most nutritious foods necessary for proper health. I researched and chose each and every ingredient for the benefits they have on the body.

Liquid Hope started out as nothing more than my way of providing my father with a daily regimen of healthy meals. I had no idea what kind of results it would have. As I witnessed him growing increasingly stronger, I realized I might have created something much bigger than a blend of vegetables and herbs – I might have created a powerful healer.

I never imagined looking at food as medicine, let alone taking a feeding tube formula public. I was a chef. That was what I knew and what I excelled at being. Now I can’t imagine my life without Liquid Hope… not just because I believe it helped my father, but because I’ve seen it help others since being made commercially available. I am grateful every day that I picked up that canister and read the label.

While my father was the inspiration behind Liquid Hope, the people it’s helped are who inspire me to keep looking forward. I began cataloging their success stories as a personal motivator, and as the amount of stories grows, so does my confidence in the healing powers of proper nutrition. Every day I receive remarkable messages on how Liquid Hope has touched people’s lives. But these people are completely unaware of how deeply they’ve touched mine. My “People of Hope” possess incredible strength, resilience and ability to endure what many cannot even begin to comprehend. They simply blow my mind and will forever be a part of my life. They’ve filled it with an endless amount of love and compassion and I’m grateful for them every day.

One doctor called my father’s recovery a miracle, and I would have to agree. Not only because he was able to return home with us, but because he inadvertently gave hope to a community of people that greatly needed it. My wish is that I can continue to expand upon this success and impact a greater amount of lives through Liquid Hope.

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Author’s Gripping Account of Her Son’s Condition Challenges How We View Mental Illness

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Screen Shot 2015-02-03 at 10.59.47 AM Randi Davenport is a writer based in Chapel Hill, North Carolina, and her story is one that parents of children with mental illness may recognize. Her son, Chase, diagnosed with autism, began showing signs of a serious mental illness by the time he reached age 14. He suffered horrifying hallucinations, became violent toward himself and even stopped recognizing his own family members. As Davenport sought treatment for Chase, doctors and specialists repeatedly told her they’d never seen anyone like him and didn’t know how to treat him. It became apparent that no one could help him.

Written with courage and unwavering love, Davenport’s memoir, The Boy Who Loved Tornadoes, tells the story of her family’s experience with mental illness and developmental disability. It gives voice to families who have endured similar struggles and had nowhere to turn. The Mighty had the chance to talk with Davenport about her writing process, what she learned about the mental health care system in the U.S., what she feels must be done to fix it and how everyone can help reduce the stigma our society has against mental illness.

Can you describe the moment when you first knew you had to write this book?

I never set out to write a book about my son’s illness. But in 2003, I was aware of a heated conversation about mental health reform in North Carolina, including everything from substance abuse, instability and mental illness. Policy makers were making their opinions known in the press about what had to be done, and I noticed there were no parents [of people with mental illnesses] making their voices heard. I decided to write a column for the local newspaper, and I’d written 100 pages when I realized this was more than a newspaper column. I still didn’t call it a book; that was too overwhelming. I don’t think I could have done it that way. I called it a project. I was doing it to offer something to the larger public, and I wanted parents’ voices to be heard. But when I’d written 600 pages, that’s when I realized I was writing a book and began to shape the pages into a manuscript.

How old was your son when he began showing signs of a psychiatric illness, and how did you initially go about getting a diagnosis for him? 

Chase began showing signs of psychosis at age 5 or 6. I took him to a child psychiatrist at a large teaching hospital in the midwest, and the doctor told me he thought Chase had atypical autism. When Chase went to hospital again at age 14, after showing more serious signs of mental illness, I asked that same doctor again what he thought it could be, and he told me he always thought Chase had childhood schizophrenia but didn’t want to say so at the time because it’s such a scary diagnosis. Chase does not have schizophrenia, but the psychiatrist should have been straight up with me from the beginning.

For much of the book, specialists were unable to diagnose the more serious psychiatric disorder that emerged when Chase was a teenager. How did this affect his treatment plans?

Chase is 27 now, and we still do not have a diagnosis. I was tasked with finding a place for him because everyone said he would need 24-hour care for the rest of his life. No doctor had ever met anyone like Chase, who had multiple symptoms that don’t lead to clear diagnosis. He hadn’t responded to anti-psychotics but insurance rules dictated that he couldn’t stay in the hospital indefinitely — nor was this the best place for him. Because he had competing diagnoses, residential facilities focused on one or another of the different treatment modalities (developmental disability, mental illness, substance abuse) couldn’t or wouldn’t take him

You and your family had to clear quite a few hurdles to find adequate treatment for Chase. Throughout that process, what did you learn about the mental health care system in the U.S. and in North Carolina specifically?

We lived in New York when Chase was little, and there was nowhere to turn to specifically to get him help. When we lived in the midwest, there wasn’t much there, either — we had the opportunity to have him removed from my house for a weekend, as a way to give us a break for a couple days, which seemed more like a punishment to me than a treatment plan. When Chase required intensive help, I quickly learned what was and wasn’t out there. Mostly, there wasn’t much. And things have only gotten worse since then. Funding for mental health has been slashed in this state, as it has been across the country. Hospitals have closed. There’s very little in the way of community housing for people with mental illnesses and many rural NC counties no longer have a psychiatrist in them. If you live in a rural county in North Carolina and have a mental health problem, you’re going to have a hard time getting help. Even families in the comparatively better-off part of the state where I live struggle to find the services they need. And just as my challenge was once finding long-term residential care for Chase, now that’s he’s done so well and needs to move to the community, I’m battling to find housing and services for him once again.

How much do these shortcomings you’ve described in the mental health care system have to do with the stigma our society has against mental illness?

Despite the fact that many families in this country are going to deal with serious mental illness at some point, the stigma attached to mental illness remains. As a culture, we still tend to view the mentally ill as suffering more from a moral failing or a character flaw than from a disease of the brain. I’ve even met parents who are very angry with their family member for getting sick and wish they would just snap out of it. And just think of the proliferation of horror films featuring a mentally ill villain–in these, mental illness becomes closely associated with extreme violence and the paranormal. Such representations enforce the idea that mental illness belongs to the evil.

How were you eventually able to find adequate treatment for Chase?

He now lives in the BART (Behaviorally Advanced Residential Treatment) unit at the Murdoch Center [in Butner, North Carolina]. It serves young men with dual psychiatric and developmental diagnoses with extreme behavioral problems. Most residents have a long history of failed placements and a history violence or crime, so Chase is different from most of the people who live there. But it’s worked well for him.

Can you describe a moment when you knew your book was helping others?

Oh, there have been so many. It was a very isolating period, when I was raising Chase. I began to connect with other people going through something similar experiences when I did readings in bookstores and on the radio. For people who do get it, it’s emotionally resonant. During a radio reading in Minnesota, a woman actually pulled over to the side of the road to call in and say, “You’re describing my son, you’re describing my life, you’re describing everything we’ve been through.” I still get emails every once in awhile from people who have had that “Oh my God, you’re telling my story” moment. I still get messages on the book’s Facebook page. There’s a lot of powerful sentiment.

How have your lives changed since your book was published in 2010?

If I were writing the book now, the ending would be: Chase is currently living without a trace of psychosis, he is holding down sheltered employment, he is working on his GED and he is ready to move from the institution where he’s lived for the past 11 years.

I published my second book last year, The End of Always, a novel that draws from a historical record of a mystery surrounding my great-grandmother’s life. One of the novel’s characters is similar to Chase, and I paint him in a much more positive light than how people with mental illnesses are typically portrayed.

How do we de-stigmatize mental illness?

I wish that every single person who encounters someone with mental illness would take a few minutes to get to know that person. They would then understand that that person is first and foremost, a person.

What advice do you have for families going through similar experiences to yours?

Don’t lose hope; you’re stronger than you think you are.

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To the Occupational Therapist Who Set the Bar High

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We met you before we had a diagnosis. You came to our house and worked with our son on what we thought were just delays and sensitivities. Upon seeing some of your first sessions with him, I questioned your methods and your ability to help him. I remember you sitting outside with him on a sunny day and trying to get him to finger paint. I remember him screaming and nearly hitting his head on the brick patio. I wondered why it was important for him to be able to finger paint. But the more I watched you and listened to you, the more I learned about the skills he was gaining to function in this world.

I remember he was over a year old, and he still would not pick up food to feed himself. Once you finally taught him that, you went on to teach him, at nearly 2 years old, how to bite off pieces of food so his sandwiches would not have to be cut up. You taught him to drink out of more than one color of sippy cup, and eventually we were finally able to give him a different color without a forty minute meltdown.

While working with him, you saw me at my worst. I didn’t know you well and often would open the door with tears streaming down my face from utter exhaustion and frustration. You always encouraged me and lent a listening ear when I needed to vent. You always offered new ideas and different methods we could try to help him overcome some of his most challenging behaviors and delays. You walked into what often looked like a disaster zone of a house and never batted an eye. You occasionally let my oldest son participate in the therapy session too, so I could lay down for 30 minutes after another sleepless night. While we were working through some of our darkest days and longest nights, you showed up every Thursday and gave us progress and hope.

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You were there when we finally got his autism diagnosis and helped me work through the emotions that came with it. We took comfort in the fact that we’d already started interventions and were already seeing a positive response to therapy.

Most important, you cared for him. You were as excited and as proud as me when my son would make strides or reach a new milestone. You taught me how to help him and how to continue to develop skills and make transitions easier, for which I am eternally grateful.

We had to move away from you, but there are reminders of your work every day. When he uses a spoon to eat, he quietly reminds himself “Don’t flip.” Whenever he sees little Chef Boyardee containers of ravioli he says, “Amy gave it.” When he’s stressed or overwhelmed with his environment, he asks me to count on him (using the joint compressions you taught me to calm him down). Whenever he sees a textured therapy ball, he remembers you and excitedly talks all about your blue “spiky ball.”  The little boy who was terrified of baths and hated water touching his head now showers regularly and loves it. The little boy who was perplexed by playground equipment can now climb, jump and swing with the best of them. The little boy who could not go out in public without throwing himself on the store floor or running away, now goes shopping with me all the time and holds my hand as we walk to the car.

We still have challenges, we still have a long road ahead, but because you cared we feel equipped for the journey. Thank you.

This post originally appeared on From the Bowels of Motherhood.

For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Dear Mom Who Said My Child Doesn’t Care About Anyone

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Dear Mom Who Said My Child Doesn’t Care,

I see how she can come across that way to those who don’t know her. She can seem distant, distracted and aloof. I know she needs to leave play time frequently for a break. I know there are times when she’s trying to control her peers. I know all of these things. I understand they make things hard and not everyone will understand her quirks.

Here is what I also know. She’s one of the most loving, open and accepting children I’ve ever met. She will play with the child sitting alone. She will give the best hugs and kisses. She loves to snuggle and hold hands, and the people in her world are everything to her.

She feels everything deeply and more than most of us. The entire world of sounds, smells, feelings and more are coming at her at full force all the time. The result? Sometimes over-the-top reactions, needing to leave when everyone is still playing, yelling and acting out. I was open and honest with you. I told you where she struggled and how you can help make things easier. I trusted you with her well being at play dates and even attempted a slumber party. Silly me. I should have known that even though you said you understood – you didn’t.

As a momma bear myself, I understand feeling like you needed to protect your child. I understand that watching her have hurt feelings was tough. I’m just wondering in what world you thought fixing things was coming to my house and not only unleashing your verbal spewing on me about all the things wrong but looking at my child and making sure she was clear your were talking about her. Emphasizing each word: “There is something wrong with you,” “You don’t care about anyone,” “You will never get to play with L again.” Congratulations. You just bullied a 6-year-old.

Did you see her face? That child you so clearly think doesn’t care? Because I did. Heartbreak. Fear. Confusion. If you would have been a fly on our wall you would have seen the tears. You would have heard her asking heartbreaking questions and crying that no one ever wants to be her friend. You would have heard her begging to go say sorry, to make it right and that she will never take a break again.

I had to level with my 6-year-old and explain to this innocent, sweet little princess that there are bullies out there and they’re not always children. I had to tell her that even though I know she loves playing with your little girl, things would be different. I had to take a little piece of her innocence and break a little piece of her heart, all because you chose ignorance that day.

I will admit. I am still so angry and hurt for my little girl. Angry that she felt like she needed to apologize for being her. Angry that you pulled her into something that could have been discussed reasonably between the two of us. Just angry.

But I am working on moving on; we are moving forward. We’ve learned a lot from this experience.

I am hoping you have too.

Sincerely,
Mom Across the Way

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This post originally appeared on Utah Easy to Love.

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To the Nurse Who Made This Life-Changing Moment Happen

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When we were in the hospital with our daughter, Reagan, we had the most amazing nurse. I’m going to call her Kate.

Kate had an incredible demeanor. She was calm, always smiling and confident; she was the exact opposite of how we were feeling.

After Reagan’s metabolic crisis, Kate helped us set up a conference meeting with everyone working on Reagan’s case, including the doctor on the floor, another doctor who was basically in charge of the children’s hospital, our genetics doctor, the hospital social worker and the neurologist. The purpose of the meeting was to ask all our questions about our daughter’s new diagnosis (which was complete basal ganglia damage and loss of all her skills up to 13 months, due to a metabolic crisis). We’d also discuss what we were supposed to do in caring for her and what we could expect moving forward. We had three pages of questions. Kate is the one who watched Reagan during that tough meeting.

Kate would take Reagan on walks around the hospital floor and rock her to sleep when we went to the Ronald McDonald House. I’d call Kate first thing in the morning to see how the night went.

One morning, Kate took Reagan to a staff meeting with all the nurses so she could be with people. So when my husband, Rob, and I walked over from the Ronald McDonald House one morning at 6:30 a.m. and couldn’t find Reagan — or any nurses — we walked the floor slightly panicked. I saw Reagan’s stroller peeking out of the cracked conference room door, the same conference room we were in just a few days ago. While we were grieving over a new diagnosis, Kate was helping us with our hope.

I asked Kate if there was any way we could give Reagan a bath — not with hospital bath wipes. A real bath. As I wondered logistically how a bath in a hospital bed would work, Kate burst into action and knew exactly what to do, how to keep Reagan warm, how to keep the bed mainly dry; it was amazing. When Kate wasn’t working, I asked another nurse to bathe her. I ended up taking over; Kate just knew how to do it best.

Kate also got us a bigger (private) room with a private bathroom, closer to the nurses station. When you’ve been living at the hospital for about three weeks, this is a huge deal.

We just loved talking with her. We told her all about our dog, Bauer, at home and how Reagan was probably missing him. She told us we could bring our dog to the hospital — what a game changer. Kate provided us with the necessary hospital paperwork to get Bauer up the elevators past security; our neighbor had taken him to the vet for any shots he needed and also to the groomer. When Reagan laid eyes on Bauer, it was the first time she smiled in more than a week.

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And it was the first time we saw actual life spring from her body since being admitted for her crisis. She cooed, she made sounds, she smiled, she had a little laugh. She was in Heaven. Bauer stayed for several hours, and I truly think he provided a link for Reagan to cling on to. She remembered him, she knew that she had tons of love from us, from our dog; we would do anything for Reagan. Our dog and our daughter have a connection. Bauer makes her laugh, he’s soft, he’s furry, he’s friendly and he’s exactly what everyone needed. Because of Kate, our healing was able to begin. We didn’t know it then, but looking back, it’s obvious to see.

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After we were discharged from the hospital, we connected with Kate on Facebook, and she followed along with our journey. We were mentally exhausted, and she saw a need. She offered to babysit Reagan out of the blue so that we could have a break. Wow! A PICU nurse is willing to babysit? The first time she came we asked, “So how often does this happen?” Her response, “How often do you want this to happen?” Not realizing that what we were really asking was how often does a PICU nurse actually come back to babysit a patient? Not often, we all surmised.

That first date night, Rob and I pulled out of the driveway and just looked at each other and said, “This is crazy!” We were driving away, leaving Reagan with someone we’d only really interacted with at the hospital. But we weren’t leaving Reagan with just anyone… we were leaving her with Kate. The Kate that loved on our daughter, our family and the parade of people who came to visit during our hospital stay. Reagan was with Kate, and Reagan would be more than OK — she would be great.

Kate has watched Reagan many times since, and Reagan just loves her. Kate is more than comfortable administering medication, using Reagan’s G-tube for her feedings, bathing her (in a real bathtub) and putting her to bed. She’s even taught us tricks to help her go to sleep.

Rob and I couldn’t figure out why Kate would want to do this, for us, for Reagan. We came to the conclusion that she’s just one of the most amazing human beings out there. She told me that she felt a connection to Reagan in the hospital, and that when she saw her reaction to Bauer, she knew Reagan would be OK. We are so thankful to have Kate in our lives and will always be forever grateful to her.

For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

This post originally appeared on rob & anne-marie.

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