I walked out of the Inland Regional Center clutching my 17 month old daughter Lilly in one hand and her autism diagnosis in the other; I was in a daze. I knew absolutely nothing about autism, all I knew at that moment was that Lilly was autistic and someone was going to call me in a few days to set up an evaluation for earlyintervention. I had a thick folder full of papers to read, forms to sign, and websites to visit. I put Lilly in her car seat, got in the car, and started to cry. The kind of crying that feels as if your soul is being ripped from your body and all you are left with is an empty shell full of pain. This was my child, my perfect baby, I had hopes and dreams for her and in my head at that time they all went out the window. I was alone, my husband was deployed and having just moved to the area, I didn’t know a soul.
I drove home that day and started reading. I read for hours and days on end. I googled every resource I was given and found about 1000 more. I immersed myself in autism until I just couldn’t read anymore. I had a million questions; the problem was I didn’t have anyone to answer them. At the time the idea of 1 in 55 children having autism was just a number because I couldn’t have felt more alone. I quickly realized I needed to find some support; there was no way I was going to navigate this new world of special needs alone and I had all those unanswered questions. My next google search was for support groups for families with special needs children. I quickly discovered there wasn’t much out there. There were a few programs for the children to play sports but nothing for someone as young as Lilly and definitely nothing for the parents.
About a week after my trip to the regional center I knew I had to do something to find some answers and connect to the community; I was tired of being alone and barely hanging on. So I took to Facebook, my only contact with the outside world at that point. I went on the Facebook exchanges where you can buy and sell items and I asked a question. “Would anyone be interested in joining a group for families with special needs children?” My goal for this question was to find 10 people who had been on this journey for a while and make friends. Little did I know this one question would forever change my life and the lives of thousands of others in my community.
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And so Lillys House was formed, not from someone who knew it all and wanted to share their great knowledge but from a woman who knew absolutely nothing and was hoping to God someone would answer her distress call. Within 2 weeks Lillys House had 50 members and I was overjoyed. I was asking question after question and people were responding. I was getting real answers from people whose children were much older than Lilly, people with experience and patience for this new mom who had so much to learn. Then others started asking questions and real connections were being made. I quickly realized that Lillys House was not only giving new parents the opportunity to ask questions, but it was giving those who had walked this path for years a chance to share their hard earned knowledge. Lillys House was growing and it was when the 80thmember joined that I realized I needed help.
My first official board meeting was in my home (where we still meet today), only one of the five people who had RSVP’d came to the meeting, but God has a way of sending just the right person. When I opened the door to meet Yemena Ibarra for the first time I had no idea how far we would go together. We got to work right away; she had 3 children with special needs and also felt the fire to make Lillys House great. Having been in the special needs community for a long while, she knew just how important what we were doing was. Our first major decision was to make sure Lillys House was open to all disabilities and ages. We knew that even though our children’s diagnoses were different we all had the same questions, insecurities, and needs. We were blazing a new trail even though we had no idea what we were doing.
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First and foremost I wanted Lillys House to be a house where God lived. I wanted to reflect God’s love to a community that might have felt left behind by religion in the past. I have been a Christian all my life and have always attended church, but when Lilly was born I had to stop going because she was unable to sit through a service or attend a children’s church. I was lost without that connection to the faith community, and honestly I felt pretty abandoned by those who preached God’s love. And that is when I got an email from Rhonda Savage of Centerpoint Church. She told me that she ran Special Blessings a program at a local church that is specially designed for children with special needs. I went the next week and found my home, the place where I could go recharge and connect with God without worrying about my Lilly. This was a vital step in the growth of Lillys House because without the Lord I would have closed it under pressure long ago.
While I loved the Facebook community Lillys House was creating I still felt like something was missing- a real connection, the chance to give a hug when someone is hurting, or just listen when someone needs an ear, so we decided to create some events. It was slow going at first for sure. Often times Yemena and I would be the only ones who showed up to the events but we persisted. We knew this was important and once others saw the benefit and stepped out of their isolated world they would to. Slowly people started coming: 3 people would come to coffee, a few to our park playdates and a few more to our Mom’s Night Out. Each time someone new came to an event the word would spread. “Hey this is fun, these people understand me, I can bring my child and not have to worry that he or she will be judged”, and heard most often of all, “I am not alone”! Soon our events were rockin’ and true friendships were being formed.
Some things in the special needs world are difficult to navigate and many road blocks can be put in our paths. Getting what your child needs from the school district, regional centers, doctors, therapists, and government agencies who say they are there to help your child can be the most challenging of all. I soon found many of our members were floundering trying to fight forces much bigger then themselves. Once again the right person came at the right time. Samantha Morton, a local special education advocate and special needs parent herself, wanted to help. Samantha didn’t come alone though; she connected Lillys House to a whole world of fantastic people who had the know-how to cut through the red tape and get things done. One voice can do so little but one of the lessons of Lillys House is that when you speak with a thousand voices people tend to listen. All of a sudden Lillys House was making a real difference in the lives of children with special needs in our community, and the community was taking notice.
About a year into Lillys House we really got on a roll. We created dance, jui jitsu, and music therapy classes by partnering with local businesses. We started giving free special education advocacy to families struggling to get their children a proper education and we put on large events to honor and pamper the parents of children with special needs. Lillys House became a true force in the community as our numbers began to grow. With about 1000 families currently enrolled in Lillys House and more joining every day we are seeing our vision come to life. Our newest venture is forming relationships with local governments to provide recreation, employment and education to the special needs community.
And while all those things are greatly needed, Lillys House is still, first and foremost, a place of connection. Lillys House is built by moms, dads, siblings, teachers, therapists, grandparents, and amazing children. A place where there is no judgment, just true connection. We have worked hard to create a place that is safe; where you can ask a question and get real answers from people who have walked the walk before you. Our goal is to never leave a family to feel isolated and alone in the overwhelming “special needs world” by providing an extraordinary place where all are welcomed, educated, empowered, and connected- and that place is Lillys House.
As for that woman who was sitting in her car crying and mourning the autism diagnosis of her child, she no longer exists. In her place is a strong, informed, educated and connected Mom who loves her child beyond measures and sees nothing but a bright future for her and all the amazing families of Lillys House!
Julia Rogoff
Founder& Director
Reprinted from: http://murrietamommas.com
