By Rich Henrich
My son is five. Last night he just said ‘Dadda’ to me for the first time. The father beamed, moved by a moment that might not have ever happened had it not been for Randy Corti, founder of Lumpy’s Foundation. “That was the coolest thing that has ever happened to me! Just to know what that moment means to you as a dad, as a parent, to have your child acknowledge you in that way is special. When you have an autistic child, sometimes, that moment never comes,” says the man behind the Foundation that is helping so many families touched by autism in the Coachella Valley and the recipient of the funds that will be raised by the Concert for Autism. About 40% of children with autism do not speak. About 25-30% of children have some words at 12 to 18 months of age and then lose them. Others might speak, but not until later in childhood. A child is diagnosed with autism every 20 minutes.
According to the National Autism Association, autism now affects 1 in 68 children. What is autism? It is a bio-neurological developmental disability that generally appears before the age of 3. Autism impacts the normal development of the brain in the areas of social interaction, social communication skills and cognitive function. Individuals with autism typically have difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities. Autism is diagnosed four times more often in boys than girls. Its prevalence is not affected by race, region, or socio-economic status. Currently, there is no cure for autism, though with early intervention and treatment, the diverse symptoms related to autism can be greatly improved and in some cases completely overcome. Autism is the fastest growing developmental disorder, yet the most underfunded. However, it is not a hopeless condition but one that is treatable.
“It started while I was in a band, Dufreign. The band wanted to do a CD release party and a lot of bands were doing benefit concerts. So, we decided to do a benefit for Autism. I have a son, who is autistic and other members of the band were also touched by autism. Several friends in other bands also have children on the autism spectrum. My wife, Linda, also has a son with autism. We met because our sons were in the same class,” says Blasting Echo frontman Josh Heinz.
When the band first started the drummer and another member all had sons on the autism spectrum. “It made sense to continue doing the benefit concert,” says Heinz. In the first year, they raised about $1,000 and added to that the next couple years while basing the show out of the Red Barn with three or four bands. By the fourth year, they decided to grow the event and moved to the Indio Performing Arts Center (IPAC). With five to six bands and an acoustic stage, Josh went out to businesses for silent auction items and raised over $5,000 for autism! In the fifth year, more acoustic acts were added to the line up the benefit raised over $6,000 and grew beyond the venue.
“We moved to The Hood in our sixth year, and did the show outside in the parking lot. Another band played the night before so (The Hood) just left the set up and we didn’t have any expenses for the venue, which really helped. We raised about $6,500. Last year, we went to Schmidy’s Tavern. Dennis and Kathy are great and so supportive of music. We had 5 or 6 bands plus an acoustic stage outside. We really raised more than I thought we would. We were able to raise about $7,000,” said the reflective Heinz on what his Concert for Autism has achieved over the last seven years.
CV WEEKLY: Going into year 8, do you think you’ll raise more this year?
Josh Heinz: I don’t know if we’ll break it. It shouldn’t be a numbers game. It should be whatever we can do to help the families that are facing the challenges of autism.
CVW: Why did you decide to give the money to Lumpy’s Foundation?
JH: Well, Randy Corti, is a great guy. He has a son with autism and started the Foundation about 10 years ago to help locally. So, funds don’t go to administrative fees or other expenses of a national charity. The money goes directly to therapists.
CVW: How important is that?
JH: We really wanted the money we raised to impact families locally. In the beginning, you don’t know what to do. You get a diagnosis but then what? Simple things like knowing you may be entitled to social security, which you are going to need to help pay for the expense of all that’s related to taking care of a child with autism. No one told us for 3-4 years!
CVW: Does that help subsidize the cost of therapy?
JH: Sorry that was a bit of a tangent. There’s just so much to talk about and it’s all connected. You can’t hire a regular baby sitter if you want to go out for a night. So, that’s more money just to go out. Sometimes the child can have a “melt down” and that might result in property damage or you need to take time off of work to handle a situation at home. You lose money from not being able to work and you are basically always on call for a situation.
CVW: And how does Lumpy’s Foundation help?
JH: The money raised goes to Lumpy’s. And they basically pay the therapist. It subsidizes the cost so families only have a co-pay of about $20 rather than $100 or more per hour that it costs normally. It really helps, especially for some of the kids that don’t always get therapy during the school year. The structure helps. There’s also a music program, Linda teaches there. Even that requires specialized teachers. Linda, being a musician and a parent of an autistic child, understood the challenge of teaching in that environment.
CVW: What can we expect at this year’s concert?
JH: We’ll have 22 different bands and performers. This is definitely our biggest concert so far. More bands want to participate but I don’t think we can go any bigger.
CVW: Is that because you need more help?
JH: Well, yeah. It’s a lot of work and we’re pretty maxed out between four kids, jobs and playing music, we do this to help families locally but it’s a lot of work and coordination. I spearhead getting donations from businesses and other people help as well. Linda sets up the silent auction and volunteers.
CVW: How can the community help?
JH: They can help by donating or coming to the show. We play a lot of benefits and we play for free to help a lot of causes in the Valley. It would be great to have some of those people come support our benefit. I hope we can also help the bands find some new fans, too. If people aren’t into the music or able to come out to the show; they can go to www.concertforautism.com and contribute through the PayPal link on the page. The concert takes place October 15-16th at Schmidy’s Tavern.
I reached out to Marcey Utter, M.S., CCC-SLP, the owner and director of Let’s Communicate, Inc. She has extensive experience working with children to increase speech, language and social-skill related disorders. Much more than just a treatment provider, Marcey’s dedication to each family results in a true partnership providing support and guidance. She often becomes a “case manager” and advocates for your child in all necessary settings including school, activities, and with other healthcare providers. She is the recipient of Lumpy’s Foundation grants that enable her to treat 60-70 individuals with autism spectrum disorders for the past nine years.
CVW: How important is the funding Lumpy’s provides?
MARCEY UTTER: Families couldn’t do it without Lumpy’s. The impact for families from Thermal to Palm Springs is tremendous. You can’t really make progress unless you are in regular therapy.
CVW: How necessary is regular weekly therapy?
MU: 100% NECESSARY! To help development, therapists really need to spend as much time with each individual as possible. Parents need to work with them daily as well. It’s critical and Lumpy’s really helps so many families struggling with economic crisis.
CVW: What’s something that you want to share about autism?
MU: These are unique individuals in our community and need to recognize traits so we know how to treat them appropriately. Autism is increasing and much needs to be understood about the role of nutrition as well. We need to heal them from the inside and so much more support is needed to help the families in our valley.
CVW: So, Randy, what does it mean to your Foundation (Lumpy’s) to work with the Concert for Autism?
RANDY CORTI: It’s the coolest thing! If every parent took it upon themselves, as they have, think of all the great work. If everybody looked at it like Josh and Linda, how much better would we be? The more we can do- it’s like scratching each other’s back. It’s fantastic.
CVW: Why did you start the Lumpy’s Foundation?
RC: I have a 19 year old son with autism. He’s bigger and stronger than I am! We’ve had 2 Lumpy’s golf stores in town since 1983 and we had our son, Danny in 1996. It’s a shock when you get the diagnosis. When you get to meet other parents, they can coach and nurture you through the process and learn from each other. The mission of the Lumpy’s Foundation is to help local families dealing with the challenges of raising a child with Autism by making therapies more affordable.
CVW: When did you start Lumpy’s Foundation?
RC: About 8-10 years ago. We negotiate a rate with the therapists so parents who would normally have to pay $100-110/ hour or more for therapy now only have to pay $20. Now, how often can they go to therapy? Once a month isn’t nearly enough. This makes it affordable so families who normally would only be able to afford once a month or maybe not at all can really get a lot more time with a therapist.
CVW: How does the Foundation determine what families are eligible?
RC: The only stipulation we have is that families need to have a diagnosis from a doctor. That’s it. You have it, you get help.
CVW: What’s the direct impact of the Foundation in the Coachella Valley?
RC: The amount of people we are helping with speech therapy is over 80 families and around another 60 with occupational therapy.
CVW: What can the community do to help?
RC: They can always volunteer for events that support and benefit autism. I’m sure Josh and Linda could use more help and I know we always need quality volunteers for Lumpy’s Scramble which takes place May 6th. Three W’s: work, wealth, wisdom- anyone is helpful.
CVW: What’s unique about Lumpy’s Foundation?
RC: The money stays local. It supports our families here and supports the therapists here. There aren’t any national fees or administration fees. Our bookkeeper donates her fees. We are only scratching the surface with kids that need help. There’s not enough help in the East Valley, especially.
CVW: What do you want people to know about Autism?
RC: My kid has shown me more about the world than anyone who is “normal.” He does this with everyone he meets! The way he can express himself, honest even if not socially correct. Siblings are more mature because they have to experience their brother who may be thirsty but too tongue tied to express it. They definitely learn what is important in life. A greater awareness is necessary.
CVW: Where can we find more information on Lumpy’s Foundation?
RC: Go to the website: www.lumpysfoundation.org
