Johnny’s Story

I never imagined that a child of mine could be different or challenged. It was never part of the plan. I always had a plan it seemed. And for the most part, everything came to pass as I saw it would..until it didn’t.

I minimized Johnny’s lack of verbal development or even lack of social development the first few years because I was busy. I had 3 kids in less than 3 years with Johnny being the third. I was working (and still am) as an emergency room doctor and my husband and I split our time between California and Maine. Life was a blur and Johnny was a quiet child. He was happiest putting rocks in the drainage pipe in the back yard. He was affectionate with our family; would smile and return smiles but never with others. He would play happily by himself and seemed engaged though in retrospect very compulsive in his activities. Family stories helped me dismiss the nagging concerns when I was told by relatives that my husband did not talk until he was three and of course, who needs to talk with 2 older siblings talking for him others would say.

Johnny at 2 years could not communicate any information. He would stand in the middle of the kitchen and cry. He would cry and then tantrum many times a day. It was not clear what he wanted. He could not point, gesture or even attempt to convey what it was he wanted or felt. He did not even look in the direction of something he wanted and could not convey emotions beyond a smile or tears. He was paralyzed… and so was I. Additionally, he would do this every night going to bed. He could not fall asleep alone or he would scream for hours. I felt as helpless as I am sure he did. I was incapacitated with sleep deprivation and frustration. I felt like a terrible parent because I could not reach my child. I did not know what to do. The pediatrician told me I was anxious and that I should just be patient. Autism was never brought up in any of the conversations we had.

Johnny went to a local preschool at 2 ½ yrs. and his nickname was the “little physicist”. He wound gather a hand full of small pebbles. He would climb to the top of the play structure and camp out at the top of the ladder. In and among all the throngs of kids pushing through and screaming down the slide, Johnny would carefully select one small stone, place it on the top of the slide and then carefully let it roll on its course. Kids would be pushing and screaming all around him but his attention was like a laser beam. He was hyper focused. With each small stone, he watched it with a keen eye, appreciating all the nuances of its trajectory and the completion of its course. He would repeat this over and over. I can only assume he was fascinated by how each rock uniquely rolled down the slide and how it landed on the ground. It was incredibly gratifying to him. It was never something he could communicate even to this day. I’m sure this activity was also predictable and safe. He lived for it. It was all he wanted to do at preschool despite my many attempts volunteering in the class and attempting to facilitate play between him and others. I did not realize then how terrifying verbal and social interaction were to him. He simply did not know how to do it and where to start. He had found an oasis at the top of the ladder. This peace quickly changed to distress the minute he was brought inside the class to interact, paint or join a group activity. He would start to cry again until we went home.

I independently referred Johnny to speech therapy at around this time. People would say, “Oh, you’re a doctor!” like it was a help. I had no idea what to do. My being a doctor in no way was helping my son or me. I was not schooled in Autism. I was an Emergency Doctor. Autism is not an emergency… until it’s your kid. There was also very little public knowledge about autism at the time in the early 2000’s and the incredible spectrum it can be. Many, including myself, did not realize that it could be mild or even that you could have a similar related condition called Pervasive Development Disorder (PDD). I had not learned anything about this in residency and really had no training in it in medical school. I honestly had very little knowledge of autism and child development and the vast area of expertise around reaching and teaching these children. I only knew that my child was not progressing. He was a complex enigma. He was at times unreachable and robotic and at other times smiling and affectionate. I was becoming increasingly worried and felt completely overwhelmed in not knowing what to do.

In June of 2006, Johnny turned three years and nothing had changed. He still was nonverbal despite 6 months of speech therapy and his behavior seemed to have become more compulsive. When he was stopped from his usual “go to” of throwing rocks or filling up drainpipes, he would tantrum violently. He was also getting bigger and stronger. Later that summer our family spent time with my sister and her family in Maine. I was looking forward to it. I was hoping for a relaxing trip, enjoying the cousins playing together and reconnecting. Johnny would spend hours throwing handfuls of sand into the tide pools on the beach and would scream and violently tantrum when dragged away after many hours on the beach. It was strange and clearly not normal. None of my friends had children doing this and my older 2 girls had developed normally. I don’t think I had realized to what degree Johnny appeared different until I saw him through the prism of trusted family members eyes. My brother in law who is a pediatrician gently looked at me one of those afternoons after watching me struggle with Johnny and said, “Laura, do you think maybe you should have Johnny tested?” And then I knew. I was so buried in my own denial that even my family felt uncomfortable broaching this huge elephant in the room. I was only doing my son a disservice by hoping and praying things would just magically right themselves. In retrospect, I appreciate the kind manner in how my brother in law allowed me to see that my son needed additional help, help I could not give him myself. It was the opening of a new door into the world of Autism.

In the years that have come, Johnny has made huge progress. He is a very verbal and quirky 14 year old freshman in high school. We have supported him in all the ways we could with early intervention, IEPs in school and social skills classes. I have also come full circle. When Johnny was first diagnosed with PDD, I internally mourned a child I thought I had lost. I was depressed. I have since come to appreciate the differences in my son and to value the person he is, not the one I expected. I have learned and continue to learn so much through Johnny. I remain in the graduate school of life with an autistic son and hope someday I graduate with honors.

I think any parent who has any children, understands the process of letting go, as they grow older and also letting go of expectations. For any parent, it is normal to have expectations, hopes and dreams for your child. However, when your child is clearly challenged from a young age, it makes that process of letting go of expectations, more sudden, raw and painful. However, what I realize now is those were not fair expectations because they were mine, not my sons. What I have tried to teach Johnny is to have his own hopes, dreams and expectations within the context of the person he is. It has been liberating for me as a parent and person while also messaging Johnny that he can be successful and fulfilled despite any diagnosis. If I could speak to the much younger me, I would say that life has a way of evolving and showing that all things will work out, maybe not in the manner expected, but in the manner they are meant to be. Hope and love are the two most powerful and lovely aspects of parenthood that I have learned. I feel, however defined, the spiritual force that allows us a shared consciousness and binds us all together, is all accepting and good. I feel parenthood has also reinforced this to me.

I work in a busy emergency room. I see human anguish and pain. However, what I have learned as a parent has taught me more about being a good doctor than any class could have ever taught. I know what it feels like to hurt. I know what if feels like to have had loss. I know what it feels like to have hope. I never learned that in medical school. I have learned that through life and through being a parent of a child with challenges, but at the end of the day, is perfect is his own way. When I look to Johnny’s future, I am not sure where he will land. I hope he is happy and surrounded by people that care for him and appreciate him for who he is. If he continues to need support even after I am no longer on this planet, I hope it will be there for him. It brings me so much joy to know that communities like Sunflower Hill are being created by similar like-minded people to be a haven for children like mine.

Written by Laura Foster, MD

Briana’s Story

“She’ll never talk—at least not be capable of conversations; she’ll never go to a regular school—unless it’s in a highly restrictive special education environment, and she’ll never be able to share a bedroom with her sister. She’ll be much too disruptive.”

Did I just hear correctly? Did this very prominent doctor—a highly-respected physician in his field, who held a top position in the child development division of a prestigious hospital—just tell me that my daughter was not only autistic, but that the rest of her life would, from what I was gathering, completely suck? Had he gleaned this vision of her future from spending 90 minutes in a room with her? Or did he just have an exquisitely unpolished bedside manner?

The next day I went to my parents’ house and broke the news to them. Amid the feeling of despair, I’ll never forget what my brother said. “She’s still the same person she was before she walked into that doctor’s office. She’s still Briana.” That sentiment has got me through more than I can ever explain to anyone. She didn’t change into something else because someone gave her a label.

Yes, I’d known early on that something wasn’t right. Briana wasn’t developing in the same way as other toddlers in the neighborhood, nor was she much interested in interacting with them…or with anyone, for that matter. She seemed to only be interested in one thing: watching Barney videos, sometimes pressing her little body up against the screen trying to enter the purple dinosaur’s world. “I go in,” she’d say, wanting desperately to be part of Barney’s Backyard Gang. When given a gift, whether it be a Barbie, a new dress, or any other toy, over which most little girls would squeal with delight, she’d set the gift aside, opting to either play with the box in which it came, or go back to her favorite activity, tapping two pencils together.

One night when Briana was about 18 months old, I was watching a CBS Sunday Night Movie called Cries from the Heart. Melissa Gilbert’s character had a son who was autistic, and although his behavior was very severe (unlike Briana’s), the boy displayed traits that caught my attention. By the end of that movie, I knew Briana was autistic. (This was before our infamous doctor visit). I went upstairs, got in the shower, and cried the hardest cry I’d ever cried.

I began researching in the library (pre-internet explosion, so Googling wasn’t an option), and attending conferences, whether it meant getting on a plane to Philadelphia, New Jersey, Denver…anywhere I heard there was something to learn about autism. I even saw the great Temple Grandin speak several times. What an honor to meet her, and to have had one-on-one conversations with her about Briana.

A few years later, I was in the same hospital where Briana had been diagnosed, and was waiting for an elevator. The doors opened and, lo and behold, there stood Dr. Wonderful. I stepped inside and began what was surely the longest elevator ride of my life. Neither of us spoke (he obviously didn’t recognize me), as we journeyed in silence. What I wanted to say with every ounce of my being was, Hi, remember me? The mother of the child of whose future you predicted would be abysmal? Guess what? She talks, she goes to a regular public school, and oh…she shares a room with her sister. So, thanks for your prediction, but you may want to stay out of the clairvoyant business from now on. At the time I didn’t feel it was worth the breath it took to utter those words. If it were today, however, I’m certain that that elevator ride wouldn’t have been nearly so quiet.

What do I want for Briana, who is now approaching her 25th birthday? I’m pretty sure it’s the same things every other parent wants for their child: To lead a fulfilling life, one that brings joy every single day. To have friends. To do things she enjoys. To grow into an incredible woman. To be accepted and not marginalized. A life that connects her to others, where she is surrounded by love, is challenged to stretch beyond that of which she or anyone else thinks she is capable, and yes, to contribute. This is my dream.

Sunflower Hill also represents a dream. My gratitude for the remarkable group of people driving this idea into existence is beyond measure, and the thought of Briana residing there one day is truly exhilarating. And possible. Because I know firsthand, dreams do come true.

Written by Lisa Cecconi

Robbie & Andrew’s Story

For as long as I can remember, I’ve been treated like the older of two siblings, even though I’m two years younger than my brother Andrew. This is because he has XXYY syndrome, a rare condition where a boy is born with an extra set of chromosomes, resulting in medical and behavioral difficulties. It is common for boys with XXYY to be diagnosed with Autism, just like Andrew has. My unique relationship with him has required my helping with a multitude of things, from teaching him cool ways to shake hands to expressing emotion through tone. Despite the impact that I have on his day-to-day life, however, I am the one who has grown more through our relationship.

Our relationship has helped me understand that others, like him, are naturally deprived of opportunities like the ones that I have and that it’s a blessing to be in the position I’m in. I see that I must take advantage of all opportunities that I have, because I know that if he had the ability to live limitlessly like me, it would be impossible to stop him from striving to achieve his goals. As I’ve gotten older, this has pushed me to work harder in school and achieve newly developed personal goals. He’s not only gifted me a determined mindset, but also the positive habits to see those goals through. I’m a strong advocate for constantly seeking self-embetterment, and my brother has helped me carry this out in my own life. Over the years, he’s developed my ever-increasing patience, which has proven to be essential in my high school journey. For example, my current workload can occasionally be tedious. My diligence is derived from this increased patience, and has been monumental in my success as a student and as a person.

As my experiences with Andrew molded me into a multi-dimensional person, it pains me to see someone live such a one-dimensional life. My brother has a minor television problem, one that I know can be addressed. He comes home from school and watches for at least four hours, and at this point, it’s one of the few things that he cares about. I’ve been addressing this with both him and my parents, pushing all three of them so that Andrew will invest himself in more productive activities as well, like reading and drawing. I’m trying to better his life in this way because he needs to lose his extreme dependency on television in order to build passions in other activities, and ultimately see more in life than just a screen. The underlying objective in my actions is to reciprocate what he’s done for me, which is to develop into a more well-rounded person.

Andrew, my developmentally disabled brother, has changed me for the better. I’ve grown into a more holistic person because of him. Although he was the brother born with more challenges, I was the brother who had more to learn.

Written by Robbie Brumm

Charles’ Story

You may have seen my brother Charles walking around Pleasanton with a smile on his face.  He walks everywhere because he can’t drive but he loves going places.   He is a happy, easy-going guy who loves to watch sports and take my dog on walks.

Charles was born in 1969 in Grand Rapids, Michigan.  My mom knew there was something amiss because unlike me, when she laid him down in his crib at night, he was in the exact same position in the morning.  Her intuition was right and after talking to the pediatrician, he was tested and placed in a special education school at 18 months of age.  The school was far from our home and I ponder how he was able to ride in a school bus for 45 minutes at 1 ½ years of age.  This was before child car seats, mind you.  He was diagnosed as having an Intellectual Disability which previously was referred to as Mental Retardation.

As a child, Charles received physical and occupational therapy in addition to special education.  I remember being a little jealous because he had lots of fun play equipment to help him practice his motor skills.  He had this huge cardboard tunnel to crawl through and a balance beam to walk on.  I didn’t understand that it was work for him to play with the equipment due to his balance and motor difficulties.

Charles also received speech therapy for many years.  It took him a long time to develop the oral control to stop drooling and to speak intelligibly.  However, once people could understand what he was saying, he wanted to keep talking.  As a teenager, he would often approach construction workers and ask them about what they were building and how their machines worked.  He still will talk to anyone about anything – sports, headlines in the news, weather, etc.

My mother never compared us growing up so I always believed that she loved us equally.  Charles had his needs/wants and I had mine.  He came everywhere with the family and my mom always talked to him about what we were seeing and doing.  She might say, “Oh look out the car window over there.  That is a farm combine.  The farmers use that to harvest their wheat.”  I know that having Charles as my brother influenced my choice of a profession (School Psychologist) and that of a few of my friends.

My family moved to Iowa when Charles was in high school. After graduating, Charles worked a variety of small jobs.  He never was paid much or worked many hours but he enjoyed interacting with his co-workers.  My parents continued to stimulate him intellectually by taking him on trips, to fairs, to sports events, and to concerts.

My mom always said that Charles would live with her until she died because no one would care for him as well as she did.  She was right but in a certain way, she limited his independence because she did everything for him.  She washed his clothes, prepared his meals, and managed his money.  He really had few responsibilities.  When asked by case workers about his activities of daily living, she would say “He could do that but I do that for him.”

When my mom unexpectedly died at the end of 2014, it was a bit of a crisis since she had not made any plans for Charles’ living arrangements.  He came to live with my family in California for 10 months while we planned his future.  I knew that I wanted him to live near me but not with me.  Even though this would be a difficult time for even a “neurotypical” person, Charles took it in stride and looked at it as new adventure.

After an unsuccessful search for a roommate, we decided he would try to live on his own in a one-bedroom apartment.  He began receiving Independent Living Services three times a week, funded by Regional Center of the East Bay.  Charles surprised all of us because with help from his ILS worker, he shopped for groceries, prepared meals, cleaned his apartment, and did his laundry.  He still has limited reading and money skills but we have discovered ways to work around his challenges.

Charles has developed a full social life in the short two years that he has lived in Pleasanton.  He goes all over the Bay Area with Social Vocational Services, participates in R.A.D.D., and goes to Friday Friends at Valley Community Church.  He went to camp for 10 days at Camp Krem last summer and recently went to prom (A Night to Shine at the Alameda fairgrounds).  I hope that one day soon, he will be able to enjoy the facilities and activities offered by Sunflower Hill.

So if you see my brother Charles walking in downtown Pleasanton, wave at him and say “hi”.  He may even stop to talk to you about the weather.

Written by Michele Plunge