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Caring for an autistic patient

Appeal-Democrat - 5/3/2021

May 3—After struggling to find services to help her autistic son, one Yuba-Sutter woman was thrilled to discover a local agency that could provide prompt behavioral support services and therapy for her family.

Jenn Long, of Olivehurst, said she has been working to care for her now 12-year-old son, Joe, by herself and it has been extremely difficult to find services that can address his behavioral issues.

Earlier this month, Long said her son's behaviors escalated after his medication refill was delayed.

The lapse in medication caused Joe to become aggressive, said Long, to the point where she had to lock herself in a bathroom to prevent getting physically attacked.

Long called local law enforcement for assistance and her son was taken to a local hospital psychiatrist for further monitoring.

Long said she explained to the doctor that she was having trouble locating services that could intervene with her son's behaviors and, according to Long, the doctor advised her to abandon her child to Child Protective Services to allow him to get help — an idea she vehemently opposed.

"I was in shock," said Long. "I immediately contacted CPS and they agreed that the doctor was probably right. What is wrong with this world that my son has to suffer and be torn from his home where he has been with me since the day he was born. I am all he knows and they want to traumatize my autistic son? Doesn't he struggle enough every single day? Hadn't he suffered enough trauma with all the in and out of hospitals and psychiatric hospitals?"

After Joe was released from the hospital, Long said she took her son to another hospital in Sacramento that he had spent some time in before due to escalated behaviors.

While there, an admitting nurse told Long that she could admit her son for a couple of days but that wasn't likely to help the current situation because Joe needed ongoing behavioral therapy, so together the pair started researching local options.

"After years of all this back and forth and dead ends, this nurse took the time to actually care about my son's well-being, not just admit him and move on," said Long. "She truly cared."

Long said she had been trying to get her son Applied Behavior Analysis (ABA) services for more than a year now, but due to the ongoing COVID-19 pandemic it has been especially hard to locate an agency that could help immediately.

Through their research, Long and the nurse discovered that there was an agency in Yuba City that could provide emergency care for situations like hers.

The Center for Autism and Related Disorders, or CARD, provides a myriad of services to individuals with autism spectrum disorder (ASD) and their families.

According to their website, CARD is a premier leader in the field of autism treatment and specializes in using the principles of ABA to treat individuals of all ages diagnosed with ASD.

"ABA is the only scientifically validated treatment for ASD and is most effective when delivered early and at a high-intensity level," it was stated on the website. "CARD provides individualized services in its centers, patients' homes, schools and work settings."

Long said CARD was able to offer her son the behavior intervention services for the next few months to get him started.

"They will come out to my home and work one-on-one with not just Joe but me too so I can be sure to continue the work once they are not here," said Long. "I cried tears of joy as I spoke to CARD about their services."

Long said the services for her son offered by CARD are also fully covered under his insurance.

According to Long, Joe will start with this specialized therapy to stabilize his behaviors and once he is able to, he will continue on with ABA therapy.

Long said she feels fortunate to have found an option that will provide support for her son while allowing him to stay at home — which was a vastly different option than what was previously suggested to her just days earlier — and she will continue to work for the best possible future for her son.

"No one else will speak up for him but I will," said Long. "I will not give up."

Long said another resource she has found helpful is the Matrix Parent Network, which provides support for families of children with special needs. She said the nonprofit organization can be reached at helpline@matrixparents.org.

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