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