Lucas’ Story

From all outward appearances, our son Lucas is a normal seventeen-year-old young man. Most people don’t recognize him as being disabled until they see him acting inappropriately. Lucas has Fragile-X Syndrome, the most common inherited cause of autism and intellectual disabilities. The cause: one gene. This gene, called FMR1, shuts down and fails to produce a protein vital for brain development. A DNA test for Fragile X is available. This blood test is accurate and can detect carriers and fully-affected individuals. Any doctor can order the test. There is currently no cure for Fragile X, although appropriate education and medications can help maximize the potential of each child.

So for Lucas, this means that he suffers from severely limited intellectual ability, which impacts his ability to think, reason and learn. He has significant trouble communicating and also suffers from extreme anxiety if his daily routine gets disrupted in any way.

Most of you are likely familiar with the movie “Rain Man”, and this is actually a great example of what it’s like living with Lucas. His days revolve around what comes next, but especially his meals. He’s obsessed with restaurants and constantly tries to negotiate his next meal out. Throughout each and every day, he is constantly asking, “What’s for breakfast, what’s for lunch, what’s for dinner?” Although we are thrilled that he can express himself this way, it does tend to drive us all crazy.

Lucas requires constant supervision when it comes to food consumption; he simply doesn’t have an off switch. If we indulge him and let him eat all he wants, it usually doesn’t end well. One incident while visiting grandma’s house ended with him attempting to wallpaper the bathroom in a nice chips-and-salsa explosion from our favorite Mexican food restaurant.

Lucas also doesn’t understand the concept of a “choice”. If we present him with two items and ask him to choose which one he wants, he always gets extremely frustrated and doesn’t understand why he can’t have “both”.

But the most frustrating times are the circumstances we don’t understand. Sometimes things just don’t go the right way and Lucas gets spun-up into a crying tantrum, usually in public places. This always turns lots of heads since few boys of his age cry openly in public.

Through all of our challenges, there are still many blessings. We all have our favorite phrases that we call “Lukie-ism’s”. If any of us are away from Lucas for an extended time period, we miss him terribly and are reminded of his innocence, especially when we repeat our Lukie-ism’s. Some examples: Lucas’ way of saying “No Thank You” is simply “No Q”. And when we ask him to say thank you to someone, the response is almost always the full dialogue of “Thank you, your welcome”. If there is something he really doesn’t want, it’s not just a simple no; it’s usually an elongated “nooooooooooo” while he shakes his head dramatically from side-to-side. We love these little reminders of our “little-buddy”.

Even so, we are frightened to think about what the future holds for Lucas. After he leaves the current special education placement in our school district, what will fill his days? His only preferred activity is to perseverate over his child-age DVDs, constantly rewinding and playing scenes that capture some strange interest for him that we’ll never truly understand.

Even worse, if we were to die, what would Lucas’ life become and where could he possibly live? He still needs assistance with grooming, gets hysterical over visiting doctors or dentists, can’t tolerate a Band-Aid or anything stuck to his skin, can’t appropriately use a telephone, nor can he express his feelings in any way other than laughing or crying.

We continue our ongoing battle to help Lucas learn the skills he’ll need to survive in this world, but without organizations like Sunflower Hill, there is little hope for children like Lucas in the East Bay. Thank you for your interest in Sunflower Hill, and please continue your ongoing support for kids like Lucas!

Connor’s Story

Connor was our second child – another boy. We had dreams of our two sons playing together, sharing toys and clothes and being the best of brothers. But as time went on, we noticed that Connor wasn’t picking up language like he should. Lots of people, including our pediatrician, said don’t worry – it’s probably just because he’s a boy, he’s a second child, or it’s because he’s so bright. After all, Einstein talked late, right? Also, there was no way this could be autism, because he was so happy and social with others.

But as time went on, we realized that something indeed was wrong. He wasn’t talking normally, and his behavior was unusually difficult – beyond the typical “terrible two’s” – which stretched into the terrible threes. Finally the diagnosis was confirmed, and we knew that life would never be what we had dreamed of. I used to say it was a good thing he was so cute, or we might not have been able to put up with him much longer! 🙂

But over the years, with lots of special education interventions both within and outside of the school district, he started to be able to communicate better, and his behavior got better, and life started to become more normal.

As his personality blossomed, we realized that despite his autism, Connor was an amazing kid. He could shoot a basketball into a regulation hoop and almost never miss from the time he was three. Now he can jump on our trampoline, and shoot the ball into the hoop backwards, behind his head, mid-jump, and make it every time. His happiness and friendliness are simply contagious, and everyone who works with Connor enjoys him. He is actually the happiest person I know. He loves music, and has memorized all the popular songs on the radio, and dances up a storm whenever he gets the chance. Whenever he sees anyone at the store or on the street, he greets them with a friendly “Hi!” and a smile and a wave of the hand. He loves to help clean up, and is a really “good helper” at home. He brightens the day of almost everyone he comes in contact with.

We knew that Connor needed a friendly and supportive, highly social environment to live in when he grew up. Unfortunately, no such place existed nearby. So, along with several like-minded parents, we formed the beginning board for Sunflower Hill, and a new organization was born. It was just a dream, a vision that we had for the future of our children. A wonderful place to live, with a sense of community and family and belonging. A place with interesting and fulfilling activities. A place that a parent can feel good about their child living for the rest of their lives, knowing that they will be happy and well cared for after we are gone.

Sunflower Hill is going to be that place. And we are so grateful that work toward that goal is progressing so well. Connor is a loving soul, and I know that he will love living at Sunflower Hill.

By Lynne Mielke

Sweet and Bittersweet

Sweet and Bittersweet

First Day of Kindergarten - 2002
First Day of Kindergarten – 2002

It’s that time of year again. The school year is ending, the weather is getting warmer, and eager graduates are getting ready for their big day. This year is a special year, as all of the little cutie pies that Andrew started school with in 2002 are graduating from high school. It doesn’t seem that long ago that I was saying goodbye to Andrew in the kindergarten playground, and shedding a tear, along with all the other parents saying goodbye to their baby for the next agonizing and glorious three hours. I am fortunate enough to say that over the last 13 years I still have some very special friendships with many of these same parents.

Because of Andrew’s special needs, he was having a very hard time socializing and emotionally handling the demands and large class size in the regular classroom. For this reason, we decided to place him in a special day class for 1st and 2nd grade. He did very well with the smaller class size and with the academics, and we wanted to place him back in general ed, so we decided to have him repeat second grade and move back into the mainstream classroom. Because of Andrew’s social immaturity and lack of understanding of social rules, this proved to be the right move and we’ve been happy with our decision throughout his school years.

Watching Andrew’s former classmates now, as seniors and getting ready to graduate in a week, just as Andrew is gearing up for his senior year, I am so proud of all of these spectacular kids that I’ve watched grow up over the last 13 years. But at the same time, I’d be lying if I said there hasn’t been this little pang inside of me, that whispers “what if”? What if Andrew didn’t repeat second grade? What if he didn’t have special needs? What would his life be like right now? We would be opening letters in the mail, anxiously awaiting to hear where he might be going to college. We’d be packing up his clothes, driving to his new school, checking out the dorms, getting his schedule, buying spirit wear for the entire family, and preparing to see him off to a new chapter.

Oh, I know Andrew is the extraordinary person he’s supposed to be, the special young man God created just for us, the person that has helped us and so many in our village to see the world a little differently, to see what’s really important, to find joy in the little things. Yes, I know all of that. I remember all of that. I have peace and am so thankful for all of that. But I have to be honest and say that I still can’t help thinking about this. This year in particular. We started this journey with these special kids, and now we are seeing them off to a brand new chapter, their very special futures – 4 year colleges, junior colleges, trade schools, jobs, and the military. I am SO proud of them! And I am proud of Andrew. And I am proud of Dan and I and the decisions we made many years ago that have helped Andrew grow into the confident, incredible young man he is now. This bittersweet feeling at first had me confused, and maybe a bit sad at times. But writing it down and thinking it through has helped me to be honest about it, and know that it’s ok to have these feelings once in a while. It’s “normal”. HA! I laugh at that term. It’s such nonsense. There is no normal. There is just us, and who we are. And we are just fine.

Congratulations to the class of 2015, as you all move on to the next exciting chapter of your lives! And next year when we are going through all the testing and college apps for Robbie, I very well may be so thankful that we are only going through it all once. Thanks for listening.

by Janeen Rubino Brumm

Corey’s Story

Our family has been blessed with many things including our son Corey, the third and youngest of our sons. While after 2 boys we were hoping for a daughter, what we really wanted was a healthy baby. Corey was the first child I was able to stay home and care for versus going back to work. His first couple of years he was healthier than his brothers had been since he was not in daycare. He also seemed to be the smartest of the three, as he would count to twelve at the tender age of 24 months.

Sometime between the age of 2 and 3 our lives were turned upside down. Corey went from counting to 12 to not even saying 2 when you asked how old he was. It was like losing a member of our family, I was losing my little boy. Thankfully the Pleasanton school system was able to get Corey into the correct schooling program, speech therapy, occupational therapy, play therapy, etc. During this time we kept taking him to various doctors for answers but it was not until Corey was just shy of his 6th birthday that we got his diagnosis of autism. It was a relief to finally know exactly what we were dealing with. Fortunately we were already doing most of the recommended treatments.

I would never say raising Corey was easy but through Corey we have met many great people and life long friends. We had great teachers, support staff including in-home therapists, speech therapist, occupational therapist, behavioral therapists, and one-on-one classroom aides. Our friends learned to understand what we were dealing with when our (at times) out of control son had a meltdown.

Our older boys learned quite a bit from Corey. He taught them to be patient, compassionate, caring young men.   They made me proud as Corey would melt down in public places. I would tell them to walk ahead to be away from the commotion but they would walk right by my side as we left dragging a screaming, crying Corey from the mall or grocery store. They were always on the look out to make sure Corey didn’t wonder off (a trait I could go on and on about!).

Fast forward to this day, Corey is a 21 year old college student at Las Positas Community College successfully taking a couple of classes at a time. He takes the city bus to and from college. He has learned to cook some things and makes the best chocolate chop cookies from scratch. He participates in the Special Olympics track and basketball. Corey has become fairly independent and can care for himself, but he certainly still needs some guidance. We are always trying to find social opportunities for Corey as it is hard for him to make friends. Sunflower Hill will be a great community for our son to gain more independence in a caring environment. I think all parents want their children to grow up to be happy, healthy people contributing to society. Sunflower Hill will make this possible for many families to reach this goal with our very special children.

Shane & Joe’s Story

Shane & Joe’s Story    

I remember vividly our drive to the neurologist with our 12 month old son, Shane, in the back seat. We had been referred by his pediatrician due to the fact he was not walking or crawling yet. Friends had encouraged us with statements such as, “He’s a boy, they develop slower,” and “I’m sure it’s nothing.” As we approached the office my husband said, “It’s going to be fine.” Well, it wasn’t. At that appointment the neurologist was very concerned and wanted to closely monitor Shane’s physical progress. When he started walking about a month later, we breathed a sigh of relief. Disaster averted. Well, it wasn’t. We saw the neurologist every six months and about 15 months after our initial appointment Shane was diagnosed with PDD- NOS, a mild form of Autism. During that time, he had not reached many of the milestones he should’ve reached. Non-verbal, minimal eye contact, lack of social and play skills and sensory issues led to the devastating diagnosis at a little over 2 years old. With additional behavior issues appearing as he got older, his diagnosis was changed from PDD-NOS to Autism.

With a positive attitude and wanting more children, my husband and I visited a genetics doctor to find out the odds of having another child with Autism. We were told 3-5% chance. Seemed low. I got pregnant again and hoped for a girl since 80% of autistic kids are boys. We found out it was another boy and we hoped and prayed that he would be healthy.

Joe was born in 1999 and seemed to be developing normally in ways that Shane hadn’t. He had better eye contact, was very interested in our pets and was much more social as a baby then Shane had been. During his first 14 months we watched him like a hawk, looking for signs of typical behavior and signs of autistic like behavior. I remember the day I knew he was autistic. He was 14 months old, sitting in his high chair eating breakfast. Often these kids have obsessions with things being opened and closed. I opened the cabinet door, he started screaming. I knew if I closed it and he stopped crying, he would later be diagnosed. I closed the cabinet, he stopped screaming. I called my husband and said, “We have a problem.” Joe was formally diagnosed at 20 months.

And our journey changed from raising one autistic child to two.

Our life became filled with behaviorists, in home therapists, speech therapists, occupational therapists, neurologists, special education, IEPs, the Regional Center and much, much more. The days were hectic with appointments but the real challenge was dealing with and managing the obsessive behaviors and melt downs that so often happened.

In 2002, with 3 year old and 6 year old autistic boys, my husband came home and said he wanted to start a non-profit to raise money for Autism. I told him to have a good time and call me when it was over! Of course I came around and P.A.R. 4 Kids’ Sake was born (Providing Autism Research). This non-profit consumed us, along with raising our boys, for 10 years and we enjoyed every minute of it (well most!) With a lot of help from the community and many people, PAR was able to raise over a million dollars for the U.C. Davis MIND Institute (Medical Investigation of Neurodevelopmental Disorders) for research as well as local organizations and special education teacher grants.

Although we were devastated when Shane was diagnosed and then again with Joe, little did we know how fortunate we would be to raise these two boys, live the life we do and travel the path that was set out for us. We have learned to appreciate the little things in life. The small accomplishments and milestones to most are huge for us. The people we have met, whether it be other parents, new friends, teachers and service providers, have developed into strong, lifelong friendships and relationships that have blessed us beyond words.

Shane and Joe are now 18 and 15 and enjoying a happy and healthy life. Although both were given similar therapies and learning opportunities, Shane is considered high functioning with mild autism and Joe is considered moderate. Shane is very active and enjoys working out every day at Club Sport, snow skiing, driving our ATVs in Tahoe and hanging out with his train loving friends. Joe is a silly, fun loving boy who enjoys asking people about their cars and favorite foods and likes to swim, hike, do puzzles and play on the computer. They are both involved in church, Young Life for special needs and Special Olympics. Our annual trip to Disneyland is a favorite for both of them and roller coasters are one of their favorite things! Our life is not without challenges and struggles and we continue to rely on our faith for strength. The rewards that have come far outweigh the challenges.

Shane and Joe have taught us a lifetime of lessons. They’ve taught us that it doesn’t matter what material things you have, not to worry too much about what others think of you, enjoy today and live in the moment, say what you think and love the people around you. We are grateful for the fact that, with this disability, our kids will never experience the anxieties in life that most people do because they live in the moment.

I’m excited to be a part of Sunflower Hill and its vision and purpose. To create a community for adults with disabilities where they can live safely and happily and also with vocational opportunities is a dream come true for parents like us. Having kids with disabilities brings such anxiety when thinking about their future. We worry about who will take care of them if they can’t take care of themselves, where will they live, will they be safe and who will be their friends. Sunflower Hill addresses all of those concerns and provides a community environment that any parent would want for their child as they move into adulthood. Sunflower Hill will meet the needs and desires of many adults with disabilities and I look forward to seeing it happen!

Written by Cindy Everson