No gifts. Prayers for Kevin Hosseini on his 19th Birthday

angel

by Debra Hosseini

Often I write about artists on this page. This story is personal. It’s about Kevin, my son.

Nineteen years ago today in a hospital in Bakersfield a beautiful baby was born. In the suitcase I took to the hospital, I packed one of the soft pink outfits set aside for the new addition to our family. The last three ultrasounds, the doctor assured me I was having another girl.

Emily would join Justine and Kathleen in our family. We were thrilled.

Imagine our shock and delight when we heard, “It’s a boy.” Instead of an Emily, we had a Kevin.

Kevin Hosseini Gauguin and Me

Kevin Hosseini Gauguin and Me

Today, nineteen years later, Kevin had planned a celebration with family and friends at a local pizza parlor in town where he has a part-time job. In preparation, Kevin spent many hours talking about the party and who he was going to invite. He wrote and rewrote his guest list. Invited were friends from his transition program, family and past paraprofessionals who’ve worked closely with him.

“I want an ice cream cake, Mom.”

“Okay, Kev.”

“I want music CD’s and clothes.”

Kevin also wanted people to dance at his party.

Tango

Tango

Today instead of pizza and cake, Kevin’s spending his birthday in a psychiatric ward twenty miles away. Visiting hours are 6:00 – 7:00 PM. He’s allowed no gifts. No dancing. Cell phones and cameras aren’t permitted.

He’s been away from home for over a week.

On the phone this morning, I was reluctant to remind Kevin that today was his birthday. I didn’t want to cause him any more distress.

Instead of celebrating, I feel today is a day for me to write, process, and reflect.

What many people may not realize is that the Art of Autism project is inspired by Kevin and his colorful, textured art.

This is Kevin’s story.

When Kevin was born I was 36. He’s the youngest of three. He came into this world with trauma. He was turned the wrong way and required an emergency C-section.

He developed normally until around 15 months when he started losing words and retreating into himself. I was so busy with three children and work I didn’t even notice. A neighbor who was an early intervention specialist did. This was the first of many people who came to our family to help Kevin.

Kevin Hosseini "Abstract"

Kevin Hosseini “Abstract”

“I notice your son riding around the block on his tricycle. It doesn’t seem he’s talking much,” she said.

She arranged for Kevin to receive early-start intervention which consisted of a play therapist and a speech therapist coming to our house a couple times a week. Not long after, the diagnosis of autism came.

At the time I thought maybe he’ll outgrow it. It wasn’t until he was six that I realized he probably wouldn’t outgrow autism.

Kevin qualified for a grant with the UCSB Koegel Autism Center. The therapists spent many hours playing games and creating structure for Kevin. They also provided training for me.

Kevin’s favorite toy as a child was Brio trains.

“Under the bridge,” the therapist said pushing a little train under the bridge.

“Under” Kevin would repeat. Kevin’s reward for good behavior was visiting the train station. We spent hours watching trains.

Kevin Hosseini "Train" was displayed at Union Station

Kevin Hosseini “Train” was displayed at Union Station

The Koegels had stellar therapists. Kevin worked hard on developing skills such as not going into a tantrum when he lost a game, and not screaming when we weren’t in the fast lane on the highway.

Kevin and John Marc, a chess champion, spent many hours in front of the chessboard. Kevin became quite competent at chess.

One therapist taught Kevin how to surf. For years, Kevin would spend most of his summers in a wetsuit on Carpinteria city beach. He was able to participate in regular surf and kayak camps with typical kids.

“He caught a wave today,” the surf instructor told me. Kevin’s skin turned a deep chocolate brown and his hair developed blonde streaks from the sun in the summer.

A friend loaned Kevin a drum kit and he took drumming lessons at Mike’s Drums Store in Santa Barbara.

Ringo

Ringo is in the book “Drawing Autism”

One day I went to pick up Kevin from surf camp and he was drumming in a make-shift band. His surf instructor was on the guitar and another on the bass. They were playing a Jack Johnson surf song.

“He’s got a little rhythm going,” the instructor said.

The day Colin arrived Kevin’s art career began. For four years, Kevin spent many hours with Colin pouring over art books learning biographies and techniques of the masters. Under Colin’s supervision, Kevin practiced different techniques on canvases.

We set aside an entire room in our house for his painting. The oil paint splattered on the walls and the tile floors. I felt the mess was a small sacrifice for the fun it brought to him. He loved texture and would layer his oil paintings with sticks and sometimes leaves.

Kevin still loves bright swirling colors and lots of paint on his canvas.

Keith, another therapist, had a dog named Bella that Kevin became enamored of. Keith used to joke that Bella, like Kevin, was autistic. They’d spend hours walking on the bluffs in Carpinteria. Kevin’s painted several paintings of Bella.

Bella

Bella the autistic dog

One day Kevin visited an art gallery in Santa Barbara and much to his therapist’s amazement had a long conversation with the curator about different artists. Not many eleven year old kids know that much about art.

In fourth grade, Kevin for the first time walked home from school by himself. I drove to the corner and parked behind a tree so he couldn’t see me. When he turned the corner, I moved my car down the street. I continued watching to make sure he knew the correct route home. I did this for a couple of weeks. One day he caught me.

Carpinteria Train Station

Carpinteria Train Station

“Mom, you don’t have to watch me. I can walk by myself,” he said.

For the next three years, Kevin walked the ten blocks home from school. He also rode his bicycle and skateboard around our small town. He was doing well in the alternative family school.

Before long, we found ourselves inundated with art canvases that Kevin completed in his therapy sessions. We began to donate his art work to nonprofits in town. He won student art contests. When he was twelve, I entered him into a regular exhibition with seasoned artists, and the juror chose his painting!

I felt Kevin’s hard work and all the hours of therapy would afford Kevin to live an independent and fulfilling life.

When Kevin was thirteen and in seventh grade, he came home one day and went to bed. He stopped talking and retreated into himself. He started pacing, flexing his arms in contorted positions, over his head. His body would jerk like a wave. Sometimes he’d go into a rage and throw things. He talked about another Kevin. He felt that the remote to the TV was controlling him and talked of an orange box that gave him messages.

I received alarmed emails from the special ed teacher at school.

“What’s wrong with Kevin?”

“Schizo-affective disorder,” the doctor said. The doctor prescribed seizure medication and an anti-psychotic.

Gotham City

Gotham City

Our world began to unravel. Kevin was no longer safe by himself. He needed twenty-four hour supervision. He could no longer be trusted to walk home from school. He would go into stores and steal things right off the shelf. The only interest he sustained was his art.

We couldn’t seem to find the right combination of medications and therapies to help Kevin.

At age fifteen, Kevin was picked up by the police and put into juvenile hall.

Police car

Police car

“He doesn’t belong here,” the captain said. “All the kids are trying to help him. They know he doesn’t belong here.”

After two nights, he was transferred to a psychiatric hospital where he spent almost two months. Then to a crisis home 120 miles away. We drove the two-hours to visit him each week.

He was put on medication that seemed to help him. He attended school again. Our family was hopeful when he came home at age 16, his junior year in high school. Kevin had learned good habits in the group home and he was appreciative to be back home. We were hopeful again.

His art continued to receive accolades. Curators took notice. Three of his works were displayed at the Museum of Modern Art in the Ukraine. Other pieces found their way to galleries in New York and Massachusetts.

Kevin made it through his junior and senior year and was excited to attend City College this Fall in a transition program. Last year his art was recognized by VSA and was at an exhibition at the Smithsonian. He has two pieces now on exhibit at the State Russian Museum in St. Petersburg.

Bus or Cycle

Bus or Cycle

Kevin has hopes for his art. After he painted this one earlier this year, he said “This one’s so good it’s going to get me to Paris.” Not long after Kevin went to San Antonio for the “Yes I Can Awards.” He won an award for visual art.

Going to Paris

Going to Paris

A few months ago Kevin started to unravel again. Each day has become worse. We’ve been working with a prominent psychiatrist (thanks to the Billingtons) to adjust his meds. He receives cognitive behavioral therapy, mindfulness therapy and has a behaviorist who comes to our home twice a week. He still paints.

Last week Kevin voluntarily checked himself into a psychiatric hospital. The first few days we were hopeful.

“I’m here because they’re going to help me,” he said on Monday.

On Thanksgiving he took a turn for the worse.

Yesterday, he had an awful day. They gave him emergency medication which knocked him out.

Today when I talked to him he said, “I want to come home. I want to have a birthday party at Giovanni’s. It makes me want to cry.”

“When you come we’ll have a big party for your birthday,” I tell him.

“Will it be a dance party?” he asks.

“Yes, we’ll have a dance party when you come home.”

Instead of gifts today, I would love if people would keep Kevin in their prayers and send him light and love on his nineteenth birthday.

Bella and me

Kevin Hosseini “Bella and me”

Kevin Hosseini’s website is www.kevingallery.com. His facebook page is www.facebook.com/kevinhosseiniart Kevin’s always had angels who help him. This is a collaborative painting he completed with J. Dan Gibbs called Angel for the Normal Films documentary “Arts: Possibilities, Disabilities, and the Arts.”

angel

47 Comments

  • Bev Johnson says:

    Prayers and more prayers.

    • Kevin, I don’t know just what special h@ll you are trapped in right now but just know that a lot of people are keeping you in their prayers and thoughts. As a sufferer of Asperger’s, PSDS and Dyslexia, I know what it is like to have a brain that betrays you, and everyone know it is not your fault. The important thing to remember is that: underneath the fog is a decent, talented human being that is loved and appreciated. Don’t stop believing in yourself.

  • nirith says:

    Kevin and your family are in our prayers . every night when we light our candles We are sending you light and may this light heal Kevin so that he can come soon home and celebrate his 19 birthday.
    We love you
    nirith

  • ellen says:

    I have one of Kevin’s paintings on my wall and I look at it every day and think of Kevin. I hope Kevin finds peace again soon and is able to rejoin your family and have his dance party. Thank you for reaching out and letting us know.

  • Jenny says:

    He’s lucky to have you 🙂
    Fabulous paintings by the way

  • Your family is in my thoughts and prayers.
    xoxoxo, Chantal

  • Victoria says:

    Praying for peace for Kevin and for your family.

  • teresa says:

    do you know about PANDAS? have you ruled this out? http://www.strepmonster.com/Home2.html my DS20 on the autism spectrum has been suffering with this autoimmune disorder for many many years and I always associated what I was seeing with autism. I was wrong. and it presents with psychiatric symptoms. sudden onset.

  • teresa says:

    “When Kevin was thirteen and in seventh grade, Kevin came home one day and went to bed. He stopped talking and retreated into himself. He started pacing, flexing his arms in contorted positions, over his head. His body would jerk like a wave. Sometimes he’d go into a rage and throw things. He talked about another Kevin. He felt that the remote to the TV was controlling him and talked of an orange box that gave him messages.”
    I selected this text from your essay because it describes what many of us face with PANDAS. It is also episodic. so when you you think they are better, when their immune system is challenged it attacks the brain causing the inflammation.

  • Mary Stewart says:

    I feel his energy in his paintings. Right now it seems like the energy in his body in like wires that are all crossed and mixed up. I want to reach out to him and untangle those wires and make him Kevin again. But he is still Kevin right now and that energy is part of who he is. I have great hope he will find his way with the help of all those who love him so dearly.

  • Aw, Deb. I’m so sorry that Kevin is struggling. Sending prayers, light, and peace to him, and to you.

  • Sending so much light and love your way. xoxoxo
    ~Annie

  • Dear Debra,
    I read your entry about Kevin and the extremely difficult time he is having, with a heavy heart. I am thinking of him (and you and your family), today on his birthday, and will hold you all in my thoughts and prayers in the coming days and weeks. As I read your story, I was struck by a jolt of recognition when I read the following: “When Kevin was thirteen and in seventh grade, Kevin came home one day and went to bed. He stopped talking and retreated into himself. He started pacing, flexing his arms in contorted positions, over his head. His body would jerk like a wave. Sometimes he’d go into a rage and throw things. He talked about another Kevin. He felt that the remote to the TV was controlling him and talked of an orange box that gave him messages.” Last June when I was giving a talk at the NIMH, IACC meeting, I listened to a speaker who is an expert on autism and catatonia. What you describe sounds like catatonia, which is a neurological disorder of movement and behavior that occurs more often in people with ASD, it usually starts between the ages of 10 – 19 yrs in people with autism and includes involuntary contorted positioning of the body and often includes episodes of psychosis. I cannot even imagine how terrible it would be to start experiencing catatonic episodes when you can’t communicate well and everyone attributes your behaviors to a psychological/emotional cause vs. a biological one. Back in the 1970s, a researcher (and parent), Lorna Wing, first recognized that catatonia occurs much more frequently in autism (see her informative article published in 2000 here: http://bjp.rcpsych.org/content/176/4/357.full ) The bad news is that very little progress has been made in identifying, recognizing and treating catatonia in individuals with autism despite the fact that it can be a devastating co-morbid disorder which greatly worsens the over all condition of the person with autism. The good news is that there are approved, effective medical treatments for catatonia 1) the benzodiazepine drug Lorazepam (Ativan) is the first line of treatment and has a high rate of success 2) for the subgroup who do not respond to Lorazepam, ECT is used and it has a high rate of success in the non-responders. Tragically, antipsychotics are often given when undiagnosed catatonia leads to bizarre and unmanageable behaviors and antipsychotics are known to greatly worsens catatonia. I would definitely look into this for Kevin, in case he has catatonia that emerged at age 13 when he took that big turn for the worse. This is the researcher (also a clinician) who gave the talk at the IACC meeting: Ms. Lee Wachtel, M.D. Medical Director, Neurobehavioral Unit, Kennedy Krieger Institute. I would be happy to put you in touch with her by e-mail if it would be helpful. I wish you all the best in the world and hold the hope that Kevin will soon begin to get better and regain all that he has lost and have his wonderful birthday party in the not too distant future. -Portia

  • Katina says:

    As Teresa mentioned above, PANDAS/PANS is worth looking into — if there is an infection (strep or otherwise), antibiotics and anti-inflammatories can help treat symptoms from movement disorders/tics, to OCD, to emotional lability (rages, etc.). Sometimes stronger immunotherapies (IVIG, plasmmapherisis) are needed, but diagnosis and treatment of underlying infection can make a huge difference. The following link has a lot of information: http://pandasnetwork.org. Wishes and prayers that your remarkable boy is home with you soon, dancing and celebrating his birthday.

  • Sending positive thoughts and a heart full of compassion to you and your family.

  • Trudy says:

    Check for infection: lyme, bartonella, babesia, mycoplasma pneumonia, strep, viruses. Bartonella, babesia, mycoP can all cause rages. Infections can cause encephalopathy (inflammation in the brain), and that’s why you may be seeing these symptoms. Does he have specific symptoms that may point to a specific infection (although it’s possible there are more than one, because the immune system may be involved.) Look for stretch marks anywhere on the body (tend to be purplish/red), foot pain, rages (bartonella), low white blood cell count/high liver enzymes (babesia), rages (bartonella, babesia, mycoP), joint pain (lyme…there are tons more symptoms of neurolyme), dry constant cough/chest pain (mycoPlasma pneumonia…otherwise known as walking pneumonia.)

  • mary browne says:

    Will pray for Kevin and his wonderful mum. His art is inspiring, sending him love on his birthday and every day. mary.

  • Dear Kevin, We hold you in our hearts and send you so much love and encouragement. You are an amazing young man, brilliant artist and loving son and brother. When we are back in California, Florentina would love to create with you. For now, we will be waiting to see pictures of you dancing with friends at your birthday party! Love, Andrea & Florentina

  • Ryan says:

    Much love to Kevin, you and your family.

  • Love and good thoughts coming to Kevin today and always, to you too, dear, dear friend… Your story had me at “Nineteen years ago today…” Words cannot describe the depth of love and respect I hold in my heart for you, Kevin and Kurt. It is a hard, hard time. I know how hard it is and encourage you to trust – It ain’t pretty, but it’s perfect… Someone said that to me at a particularly difficult juncture in my life and – in time, more time than I wanted it to take – their words were proved true. I love you all and pray for all of you… This story is absolutely perfect!

  • I hope with all of my heart that he finds some inner peace and is able to return to his life with his wonderful family.

  • Cheairs says:

    Kevin, you do not know me. I do not know you. But I send love and prayers to you and your family. You are held….never alone….a community holds you.

  • Al Pfadt says:

    I have been a big fan of Kevin’s since I first came across his art through your web site. It is so distressing to hear about his struggles with his mental illness but the good news about this recent psychiatric hospitalization is that he initiated it because he recognized that he needed help and seemed hopeful that he might get it at the hospital, according to your account.
    Diagnosing and treating psychiatric disorders is difficult in the general population and even more so when the person has a developmental disability. Have you and Kevin found a psychiatrist whose professional judgment you respect and trust? It is critically important to find someone who treats you as collaborators and recognizes the importance of psychotherapy as part of the recovery process.
    Let me know if you need help in finding someone in your area, I may have some contacts for you depending on where you live.
    Recovery is a long term process and there will be many stumbling blocks along the way.
    Keep the faith. Recovery is possible. Your son has so much to offer and obviously has many strengths and capabilities. Dr Kay Jamison is my role model in this area- read an Unquiet Mind for her story.
    Please continue to share Kevin’s work with us and keep us posted about his progress.

  • Trish says:

    Love and prayers for Kevin.

  • Nancy Melet says:

    Saying prayers for Kevin and the whole family

  • Rebecca says:

    I just finished reading a book that reminded me of Kevin’s situation and this acute episode: “Brain on Fire” It is about a young woman’s struggle to overcome anti-NMDA receptor encephalitis.

  • Kassiane says:

    I’m not a pray-er, but I am a thinker and a love-er.

    Love and thoughts to Kevin. I too love to dance. Dance party & all your favorite music, Kevin, if we’re ever in the same place I will teach you to swing dance.

    But this is today & today I can’t do that. I can send my love, though. Good luck. Kick those brain cooties right in the behind.

  • Becki Norton says:

    Dear Kevin,
    We are surrounding you constantly with golden, violet, and green light for complete healing, love, and protection.
    You are an amazing young man.
    Your birthday party will happen soon!
    Love,
    ~Becki

  • Stcampbell says:

    I just want you to know how much I love Kevin’s Art – I buy his cards and give them away, but I always keep a few to look at myself because they are so incredible. We have an ASD son who also draws but I can say that I love Kevin’s art in a way that I have loved art all my life – it has nothing to do with it being aut-art. I will pray for Kevin and for you that time and the power of art will pull you all through.

  • Jan says:

    What a heartbreaking story… I am praying Angels are with Kevin and bring him healing and hope to you Deb.
    I also have to say I’m another Mom whose son with Autism woke up one morning (just before his 11th birthday) different and not in control of himself anymore. It ended up being PANDAS. We just got lucky that one of the preeminent experts in the field had just moved to Providence, otherwise I don’t think we would have been diagnosed.
    Hoping to hear good news soon that Kevin is home and dancing and enjoy his pizza party birthday!

  • Maryse Kloss says:

    Will pray for your special guy. I can’t stop looking at his artwork, it is amazing and beautiful. Thank you for sharing your story.

  • Hi Debra and Kevin …. keeping you both in prayer. Debra please contact me at gentry_radical@yahoo.com Please put Kevin and Debra in the subject line so i will know who it is from and not delete the email. Thank you, God Bless you …. Randall

  • Debbie says:

    Thank you to all who have responded. Kevin is doing better and should be getting out Wednesday. I’m looking into suggestions from many of you. I appreciate all the emails and the people who enjoy Kevin’s art. He’s a very special person.

  • Debbie…what a lovely job sharing Kevin’s story. He always was a remarkable kid and will continue to be! I love seeing his art online. Sending many thoughts and prayers.
    Best,
    Mendy (Boettcher) Minjarez

  • Karen Wood says:

    So sad about Kevin. You are doing everything you know possible to do. He is very talented and I love his paintings. I will send prayers and healing thoughts his way.

  • Sid says:

    You deserved that birthday you had hoped for Kevin. Hope you are out dancing and painting again sooner than soon.

  • Teresa Hulse says:

    Praying for Kevin and sending healing thoughts !

  • Rick McGarry says:

    Psalm 120:1 I call on the Lord in my distress, and he answers me.

  • What wonderful , caring people you have in your lives. The art work is stunning, so is the person who created it.

  • Good Afternoon Debbie,

    I was referred this article by a friend’s mother. Your story has touched my heart and I wish the best for Kevin’s and your family’s future. Kevin is a gifted young man and so fortunate to have you as a mother.

    Kristina

  • Connie says:

    Wishing your whole family peace, love and healing. Kevin, your artwork is AMAZING! What a gift you have. I am hoping you feel better soon and your family can have the best dance party ever! You all deserve a happy day and life. Sending hugs on your birthday. Connie

  • margot davis says:

    I just got to read this, Deb. I will pray for Kevin. When he has his party at Giovanni’s [which I know that he eventually will] I want to dance with him. Keep your faith.

  • SBMike says:

    Thank you Debbie for the frank truth about life, humanity and Kevin. Kevin’s art is so deep and your love for your son is beautiful. You hang in there. 2014 will be much better. Very moving depiction of the joys and struggles of real people.

  • Eileen says:

    I was touched and moved by reading your article Debbie, and hearing about Kevin’s life. Such a special young man and mother! It sounds like you’ve tried many interventions over the years to help & support Kevin. I wondered if Kevin has ever tried homeopathic medicine? There is a great book called ‘The Impossible Cure’ written by Amy Lanksy, also a mother of an autistic child. There is a website too, which has details of homeopaths throughout the U.S that have had success treating people on the spectrum, and also an online forum which might be of help. See http://www.impossiblecure.com/autism.php
    Sending much love & light to Kevin.

  • Merle Betz says:

    I saw his work in the News-Press, and saw some of his work currently at the Library and recognized it from earlier. I am 70. I can empathize in that my brother was a paranoid schitzophrenic and I am a mild bipolar, with some episodes of simultaneous mania and depression, and have started recently on Lamictal. It looks like you have been trying to help him a lot, rather than abandoning him as happened to my brother. Since I like his work so much, I may go back and try to buy a few pieces. He reminds me of various French, German, and Scandinavian artists and has a deep sense of color, balance, and emotion like certain post impressionist/expressionist painters. Good luck!!

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