Jake’s Story

Jacob and our story

To understand why we so desperately need such a community, it’s best to hear a personal story.  This is the story of my son, Jacob, and our family.

I’ll never forget the day Jake was born, about 6 weeks earlier than his due date. I remember being overcome with emotion as the nurse handed me Jake.  Jake was delivered C-section, and his mom, Julie, was recovering in a hospital room.  As a part of normal protocol, the doctors examined him. Soon thereafter, I remember the doctor saying something to Julie’s father who promptly dropped his head, as if dejected.  The doctor then told me that based on the examination we should get Jake tested by the genetics department.

About a week later we were told that Jake had Trisomy 18-, meaning that his 18th chromosome was malformed.  We were devastated, since the prognosis for Trisomy 18 babies was that virtually none make it past their first birthday.  A week later we got a call from the genetic lab and they said, “oops, we’re sorry, but we made a mistake. Jake does not have Trisomy 18, he has Trisomy 9”.  The good news was that it was not Trisomy 18.  The bad news was that there was essentially no data on Trisomy 9.  All we knew was that approximately one-in-a-million babies are born with this, and that Jake would be mentally retarded.

Like the realities all similar parents face, you quickly find yourself in a different reality  – far different than you ever imagined. Suddenly you’re in the world of special needs, Regional Centers, IEPs, Special Olympics, special camps, physical therapy, occupational therapy, speech therapy, etc., etc., etc.  As Jake grew and developed, albeit at a much slower rate then other children, I saw Jake not as a “mentally retarded” person, but as a unique person like anyone else.

Jake is really funny and he makes me laugh. At times, he can be a bit devious.   One time we were out for a hike with my family.  Jake’s grandfather went into a port-o-potty.  When no one was looking, Jake purposely somehow locked the door so his grandfather couldn’t get out, running away with a devious, guttural laugh that had everyone rolling.  Fortunately, we were able to get grandpa out J.   Jake also reads at a high level, and spells very well. He has an incredible memory and a great sense of direction. He reads all the standings and box scores in the sports page every morning.  He loves all modes of transportation, knows every BART stop, airport, and every car model and detail. He’s a good swimmer. He is fascinated by and can figure out just about any technological device, especially the iPad, iPhone and laptop, etc.

Like any typical teenager, Jake has aspirations and desires. He likes to be appreciated and succeed.  But he is also multi-faceted with many different, often contrasting traits. He stutters and has difficulty speaking clearly, which makes him hard to understand. He is an incredibly picky eater.  And he has some impulse control issues. He needs to be pushed.

Although people love Jake – especially his younger sister Jess – he doesn’t have many friends. I think he knows he’s different, yet I don’t think he thinks too much about it. Jake tends to live very much in the moment – he is sometimes happy, sometimes sad.

In many ways, it’s easier when special needs children are children. They are “cute”, they go to school, and they live with you. They are safe. There is a relatively clear path and plan.

As Jake becomes an adult, his future is less clear and worrisome. Where will he live? What will he do? What will be his passion and purpose in life? What will happen when I become old and frail, and when I die? I don’t want Jake to be a burden to his only sibling, his sister, or to be without others who care for him.

I want Jake to have a community of like people, who care for each other, who he can live with. I want him to have friends or even a life partner. I want him to be a part of the greater community, but the reality is that he won’t be “friends” with a “normal” person.

He wants to grow and be useful as a human being, as we all do, but he will need a support system. He needs a community.

And that’s why we need Sunflower Hill.

My mother, Dorothy Elfin, passed away from lung cancer in February of 2013.  A lifelong musician and piano teacher for 60+ years, “Dot” was somehow sophisticated and down to earth at the same time. Although she didn’t have much experience with special needs people until Jake, she loved Jake dearly and treated him with the same respect and sincere manner that she treated everyone else.

So when she passed away and my family was pondering where donations should go, my sister Sue and I separately both suggested Sunflower Hill, knowing that Dot would be behind us and Sunflower Hill’s vision. Although it was a sad time for our family, I’ll always feel good that the donations made in Dot’s memory were the first dollars donated to Sunflower Hill, allowing us to launch and laying the foundation to build this community that is so desperately needed.  I know she would be proud.

by Jon Elfin

Robby’s Story

Why Sunflower Hill?

I am involved with a new non profit (501c3) called Sunflower Hill. Our goal is to create a sustainable permanent residence/community for individuals with Autism and other developmental delays.  I’ve been asked by a few friends why we created this organization and why Sunflower Hill is needed…

And to appreciate that…it’s probably important to tell my story – and the story of Robert Andrew Houghton, my wonderful son who has Autism.

Robby was a typical baby and he was not diagnosed with autism until the age of 2.  Like many others, he lost words. He did not point to things.  He seemed to look through me and become distant when I tried to engage.  After a reality check that there was something wrong and indeed it was Autism,  I spent the first few years of his life trying to figure out how he got it.   The ‘how he got it part’ went to my own guilt.  Did I do something wrong as a mom?  Was this my fault?  It took a lot of courage for me to have a third child – another son – for fear of this possible repeated outcome.  But guilt gives away to resolve.  And while I will probably never know what caused Rob’s Autism, after the early shock of the diagnosis, I became determined to ‘fix him.’

I sure many of you went through the same drill. I thought that if I worked long enough and hard enough Robby would become one of success stories – growing up as a typical child and becoming the adult we all wanted him to be.  We became LOVAAS (Applied Behavioral Analysis) parents.  We had aides in our home eight hours a day. Rob did so well that he was able to enter a typical kindergarten class with higher skills and knowledge than most of his peers.  We had a wonderful aide who helped him but despite my hopes and dreams that he would ‘make it’ —-he did not — and soon was assigned to special education full time.

And so you adjust…

When a child with special needs turns about 10, your parental focus changes again. Now you have the reality that this disability is permanent  — and so you set your sights on making his or her world the best place possible – great teachers, a full life, wonderful aides and being happy.  That meant loving Disney princesses, rock climbing, wrestling with his brothers, going to summer camp each year and learning the words to every Disney movie that ever existed… (yes, I know them all too…) Robby was an incredible artist and could draw freehand just about anything he saw. Of course, most of his focus was on all things Disney but his talents amazed us all.  Rob had great experiences in high school – including being the honorary drum major for the school band and marching with pride around the track and participating in Special Olympics and running so fast (and then abruptly stopping!) that you wondered what he could have accomplished if he had been a typical track athlete.

But now we’re adjusting again…and we must create something new.

As Robby becomes an adult, his future and really the future of all individuals with autism and developmental delays becomes clear and worrisome.

Where will they live? What will they do?  What will be their passion and purpose in life?  Unfortunately, the reality is that one in 50 individuals are now born with Autism.  More than 500,000 will become adults in the next decade… is society prepared?

There are many individuals with Autism and other developmental delays who will be able to live on their own or function as adults with minimum support.  And there are great organizations out there creating opportunities for them.  I envy them.  I would love more than anything for Rob to be able to live like that.  But my Robby is too innocent. If someone asked him for all his money he would gladly hand it over and then ask if that person (the criminal) if he/she was alright and happy?! Rob wants everyone to be happy and smiling and he doesn’t understand that the world isn’t always nice.

And that’s why we need Sunflower Hill…

There is a movement across America to build long-term residential communities for individuals with special needs. We’ve seen early innovators like Bittersweet Farms in Ohio, Sweetwater Spectrum in Sonoma and Friends of Children with Special Needs in Fremont that are truly making the world a better place.

Sunflower Hill hopes to create a similar community in the SF East Bay area.  Imagine an intentional community not unlike “senior living” – where individuals with autism and other delays can live, work, play and thrive.  That’s our vision for Sunflower Hill.  And why not?  Doesn’t everyone deserve a full life?

I have been fortunate to work at amazing jobs in my career and to have great colleagues and friends.  But as I also get older, I realize that one of my personal goals is to make sure a community like Sunflower Hill is created and thrives.  Not just for Robby – but for every other person with Autism who might benefit in the future.

Margaret Mead once said,  “Never doubt that a small group of thoughtful, committed citizens can change the world.  Indeed, it is the only thing that ever has.”

I think about this quote when I ponder what’s ahead of us in creating Sunflower Hill. Yes, it is ambitious. Yes, it is a lot of work.  I told our board of directors that it was a good thing we liked one another because we were all in it for the long-haul!

But if we don’t build it, who will?  Who will help our children navigate when we’re gone?  I want to look down from Heaven (assuming I am going there!) and see my son happy and thriving in a purpose-driven life.

I hope you’ll spread the word that action is needed to create comfortable, safe communities that ensure a full life. We need communities like Sunflower Hill everywhere! Let’s change the paradigm together…

On behalf of Robby and every other child in our organization, a heart felt thank you…

Margaret Mead “Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”

Margaret Mead

by Susan Houghton