Ryan’s Story

A Day With Autism in the House

Our 12 year old son, Ryan is obsessed with videos and on this day, he is obsessed with Penguins of Madagascar and not just any Penguins of Madagascar. He is obsessed with one episode titled “The Lost Treasure of the Golden Squirrel”. Seems simple enough, considering just about every video known to the world is available in one form or another on YouTube…just look it up, right? So he did and there it was! Only it wasn’t…it said it was but it was the WRONG VIDEO! Oh, cruel world! Who would put up Season 2 Episode 4 with the title “The Lost Treasure of the Golden Squirrel” and then show “Call of Doody?” The tears and frustration of trying it over and over but it’s always WRONG! But wait, here’s another one…oh but it’s only the 43 second trailer for “The Lost Treasure of the Golden Squirrel” not the full episode…more tears, more frustration. Helpful parent, “let’s try Amazon Prime” only to find “This episode is currently unavailable” Not available to rent, not available to buy…unless I want to buy the entire 56 episode set from Season 2 for $89.00. No I do not.

Ryan then suggests the library. The library! Oh but the library is closed because it’s a holiday. More tears, more pacing, more stemming and repeating…at least the mantra has changed from “It’s the wrong one” to “the library is closed, I’m sorry, the library is closed, the DVD is not here” We look it up at the library to see if we can reserve it…they don’t have that episode. I’m beginning to wonder if this episode really exists or if it has been deleted by the NSA due to the highly confidential material related to the Golden Squirrel Secret Weapons Program.

We take a break from tears and videos and frustration. Ryan has been whisked off to the airport, his happy place, and I am still searching in vain for the lost episode. I stumble across a random YouTube video that shows the opening credits to EVERY single Penguins of Madagascar episode for every season. Seriously who has the time or inclination to record and post that? I try season 2 and TADA! I hit squirrel gold only 6 trailers in and discover that the episode is really number 7 NOT number 2 (the aforementioned Call of Doody). Search for Season 2, episode 7 and yes! It’s there!

Ryan comes home, I’m the hero and after all of the tears and mumbling and misery, he forwards to that one certain scene where the penguins fall down or fly up or crash into something or whatever was in his head that he HAD TO SEE in order to make the world right for him on this day, at this moment.

And then he’s done…for this day.

The next day he comes home and discovers that furniture has disappeared in anticipation of new floors. He is sobbing uncontrollably as he looks at the empty places in the room. Lying on the floor where the couch used to be, repeating “I want the chair back, I want the holes to go away”. I am hugging my 12 year old man child as he weeps for the couch and the chair and his orderly world that is suddenly out of order.

The next day is a better…”when are we getting a new chair?” I want the new chair now. I want the new chair to be gray. Where did the old couch go? When can we visit it?” There is a small light appearing at the end of this particular tunnel. These are the small victories we take in small steps as we just try to keep moving forward. Not every day is like this, most are blissfully tear free and filled with smiles and laughter and so it goes with Autism in the house.

But what will it be like when this house can no longer be Ryan’s house? What happens when our kids who need routine and structure and want friends but can’t quite figure them out need to be on their own? What type of house will work for Ryan?

Our hope is it will be a place like Sunflower Hill. A place where Ryan can have friends who experience the world the way he does; a place that offers support and structure to help him navigate his days. Our hope is that Ryan will be able to live a fairly independent life, that there will be some sort of employment for him and that he’ll be in a safe community. A dynamic place where Ryan can feel good about himself, have the freedom to be who he is and the opportunity to find out who he can become.

Ryan currently lives in Pleasanton with his moms, Diane Berry and Regina Stoops and his two brothers Jack and Evan. Diane is a Director at Anthem, Inc. and Chief Adventurous Mommy. Regina is the Chief Operating Officer of the Berry Boys household. Regina is also a standup comedian and writer who was born and raised in Normal, Il. She spends much of her time finding the humor in her “normal” life. Regina has found that being upset about what comes your way is not nearly as much fun as turning it into a comedy routine. Regina recently performed for the Sunflower Hill Comedy Night and here is a clip from that event: https://youtu.be/xiUiSPrII2o. Follow Regina at www.facebook.com/reginastoopscomedy

Andrew’s Story

Andrew’s Story (Well, the first 17 years of it!)

Andrew was born in February 1997. Our first year was bliss. He never cried, slept through the night very early, and was never difficult. After that first year, life took a turn. Andrew had febrile seizures, starting at 12 months old and ending at 6 years old. He wasn’t talking or walking at 2 years old, so he started speech therapy and physical therapy. Whenever a milestone wasn’t reached, Andrew always received early intervention. He was a happy, easy baby and toddler, and we were (and still are) so in love with him.

Fast-forward through preschool in our district’s “Communicatively Handicapped” class (which got him talking up a storm!), elementary school (a mixture of special ed & general ed), social skills classes, more speech therapy, adapted P.E., and many IEP meetings. Whew. For many years he was never diagnosed with autism, although we asked. He never had “enough” of the behaviors needed for a diagnosis until 4th grade, when he was finally diagnosed with HFA (high functioning autism). But still, I knew in my gut we didn’t have the whole picture (especially because the HFA diagnosis wasn’t an easy one to make). In 2010, at 13 years old, his new behavioral pediatrician wanted to get chromosome testing. So we did. And there was our final piece to the puzzle. Andrew has a very rare, random chromosome variation called 48xxyy. He has two extra chromosomes – and extra x and an extra y. That is his primary diagnosis (autistic behaviors are under the xxyy umbrella), and that is why our Andrew is the special, unique boy that he is. It was a 13-year journey getting all the answers to why Andrew is who he is, but we have them, and we are so grateful for that.

We have always raised Andrew and his brother, Robbie the same way as much as possible. Throughout his childhood, we were involved in playgroups, sports teams, family social functions/vacations, boy scouts and clubs at school. We still do most of those things today, only Andrew’s sports are now through Special Olympics, and he has a friend over once in a while to hang out (those are special days!). And yes, we are a very social family and get together with family friends often – our “village.”

Andrew is now 17 and a junior in high school. He is doing well, but still struggles making and keeping friends. I think the main reason for this is that Andrew sees himself as “typical” and his peers do not. Andrew also struggles with impulse control and making good choices throughout his day. But he also makes us laugh every day and think about the world in a different way. It’s a special thing.

At this point, we do not see Andrew being able to live on his own as an adult without support. And we don’t want his brother Robbie to have to be responsible for Andrew some day when we are gone. Andrew struggles making good choices and he needs constant reminders to finish daily tasks (including taking care of himself). Because he wants friends so badly, he could very easily get himself into a situation where he is taken advantage of. It is for these reasons we hope Sunflower Hill becomes a reality. The vision of Sunflower Hill is the vision we have for our son. A community like senior living, where there are social opportunities, work opportunities, and friends like him that feel like family. “Community” is the key word. We want Andrew to be living in a community where he feels loved, wanted and appreciated. With autism now being 1 in 68, there are thousands of developmentally delayed children growing into adulthood and their parents are facing the same dilemma as us: Where will he live? Who will take care of him when we are gone? This is an overwhelming question to face as parents, and one that we hope will be answered for us and for many other parents in the Tri-Valley, with Sunflower Hill.

Andrew has most definitely changed our lives for the better. Our entire family and our friends are all better people because of the important lessons Andrew has taught us. The way I see it, EVERYONE has challenges in their life. Whether it be parenting/caring for a special needs child/adult, health problems, a difficult marriage, death, a challenging job, other kinds of issues with their children, caring for aging parents, etc. But my challenge? Mine comes with rewards, almost every day. We celebrate every little thing – turning a D into a C, saying “hi” to a new friend, following the rules at school, “getting” sarcasm, reading body language, compromising, and I could go on. We celebrate all the little things that are intuitive and taken for granted by most, but have to be learned over and over again by Andrew. So, my challenge, though difficult, is rewarded on a daily basis. All should be so lucky. ♥

Written by Janeen Rubino Brumm

Spencer’s Story

Spencer’s Story – The First Day of the Rest of Your Life

I am a father of a special needs son who became an adult in June. An adult by government definition is 22. The Individuals with Disabilities Education Act (IDEA) mandates a free and appropriate education for special needs individuals through age 22.

While we prepped for this day since our son was diagnosed with Infantile Spasms at six months of age, we now find ourselves facing the reality of what to do now that his structured life has come to an end. His school bus doesn’t come anymore. His teachers, aides and transition life skills are officially over. And, his long term living situation is also now a harsh reality we must come to grips with – does he live with us the rest of his life or do we find him an environment where he can live as normal a life as possible?

We have gone through all the wills, conservatorships, trusts and future looking preparations that one must deal with in our situation.

An article in the NYT in 2011, pegged almost 60% of adults with special needs services (article mainly focused on autistic infliction) now live with their families. The numbers are growing exponentially as those diagnosed on the spectrum today are now 1 in 68. Are we as a society prepared for this wave of people who will require support and assistance as they age?

So, here we are. We have arrived at that chasm. My wife and I have explored every adult living option possible since our son was 14. I personally joined the board of an organization – Sunflower Hill – whose mission is to create a living community for Adults with Special Needs. Sunflower Hill is two years into the process and making great progress, yet it will likely take a few more years to gain the land and build the community we envision. But, we are committed to solving our respective issues as a united group of parents who face the same life journey.

My wife and I did find a wonderful day program for our son to begin his post school life that started this last week. That said, the program treats our son like an adult who can make his own decisions and find his way to the program. That requires that he can make an appropriate decision and can find his way to the program across town. Thankfully, he is on the higher functioning end of the spectrum, but he still lacks the reasoning skills necessary to navigate the nuances thrown at him.

He desperately wants to be like everyone else (sic normal). He wants to make his own way. We have multiple options of getting our son to the program: Bart (SF version of the subway), a county bus with connections, a cab or one of us driving him to and from his program. The conflict of letting go and wondering if he will catch the right train or the right bus and get off at the right location gnaws at us. In addition, will he be able to push the button to cross the street of a busy highway, while navigating drivers and cars who are not aware of the situation.

My wife conducted multiple test runs with him on the bus scenario over the first three days and then dropped him off at the bus stop for day four so he could fly solo. She waited at the other end. The bus schedule got messed up due to traffic issues. He had a new driver, who was not concerned about babysitting our son to pull the chord. He missed his stop, but realized it and pulled the chord for the next stop (which was okay, but an even busier intersection).

We are cautiously proud of his determination to make this work, but like all parents who are letting go…we freak out by the “outlier scenarios” that will require him to think on his feet. The irony is, this fear could go for any normal teenager who is looking at their phone vs. paying attention to the situation. But, for adults with special needs, a large does of empathy and compassion are required to help nudge them along to get to their destination.

After last week’s experience, I reached out to see if there was a way to create a unique service for people like my son. A safe alternative to mass transportation that could align with the “routine” driven make up of people like my son. I was made aware of a service being tested in Chicago and soon to be LA for people with disabilities. I inquired about extending this to our area.

I share this journey, because I have met many people in my shoes who are also facing this reality or will be in short order. All we have are each other and our stories to help us to move forward. If you have ever seen the movie Groundhog Day, I believe we are writing the sequel.

by Tobin Trevarthen

Dean’s Story

Our first child Dean Christopher was born on August 30, 1994 after many exciting weeks of waiting, planning and anticipating.  He arrived two weeks late and came by emergency C-section.  He was beautiful and had a head of curly hair.  Since we were new parents, we had no previous experience with babies and so we just blissfully enjoyed and got to know our new son.

Dean was a sweet, easygoing baby.  He ate and slept on a schedule, and was hardly ever fussy or cried.  He just did everything I wanted him to.  My husband Chris and I were convinced that this parenting thing was a breeze.

One day my dad was holding Dean and he asked me why Dean never made eye contact with anyone. Of course I did not know.  I thought it was a strange question and I just filed it in the back of my mind.  But then my mother-in-law asked my husband Chris something similar. We became alarmed and went to the doctor.  By this time Dean was 5 or 6 months old and was having trouble sitting up.  He seemed floppy and unsure of his body. And so the medical appointments began.  Over time Dean was able to meet most of his developmental milestones, but by about a year late.  Pointing, sitting up, crawling, walking, talking were all very late.  When he was two, we enrolled him in an infant/toddler program through the County of Santa Clara and that is where we first heard the word “autism.”  Our world changed forever.

Hearing that our sweet son Dean was autistic was like being trapped underwater without a breathing apparatus.  We felt choked for air.  We were terrified.  All of a sudden the trajectory looked different.  All our dreams and plans for him would have to be retooled.  How will we navigate this new course and will he be OK?  Will we be OK?

We were clear on one thing.  We knew we must intervene and educate ourselves on how to best help our son grow and develop in his own unique way.  Most importantly, we wanted our son to be happy and to enjoy his days.  He did, and he does still. We always have plenty of fun together as a family – which has been a saving grace for us.

Dean is a very fun guy.  He is sweet and affectionate, and exceedingly relaxed and flexible.  These qualities have allowed us the latitude as a family to do many things together –  amusement parks, the beach, shopping, dinner, staying in hotels, etc.  We are thankful for Dean’s flexibility and have come to realize that not every family of an autistic child enjoys this gift.  Dean is also athletic.  He enjoys swimming, basketball, long walks, weight training, Frisbee, and bowling above all! He is currently on a summer bowling league with his dad and his sister every week this summer.  Dean is a “serious” bowling contender and enjoys every minute of it.  Dean is without guile of any kind, and is very polite.  He loves chips, popcorn, and ice cream.  Don’t try to beat him at Wii bowling because you will not be able to!!!

Having Dean as my son has taught me many things.  He has made me exceedingly patient.  He has taught me tolerance.  He has helped distill for me what it means to be a parent.  After much thought and many years I realized that it does not matter if your child is typical or atypical. Everyone’s journey is worthwhile and important and sometimes growth and development happens on a completely different path and that’s OK.

It has taken Chris and I many years to become comfortable with Dean’s autism.  This is because we have always worried about what his adult future may look like.  What will happen to Dean when we are in heaven and not here to keep him safe and comfortable?  We do not want his little sister, Natalie, to be solely responsible for his needs since she will one day have a life and family of her own.  This is why a residence like Sunflower Hill is so vitally important to so many families such as ours here in the Tri Valley.

by Lisa Rosare