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July 10, 2019

A Mom’s Journey with a Son Who Has Autism Spectrum Disorder

An Interview with DeeDee Velasquez-Peralta, LMSW

DeeDee began her journey as a social worker working with children and adults with disabilities, developing behavioral support plans to help them successfully be integrated into mainstream classrooms and into their communities. She then started working in healthcare where she utilized a strength-based approach to psychosocial assessments and individualized care plans for patients who experienced traumas requiring rehabilitation to those diagnosed with chronic kidney disease. DeeDee has developed programs and resources that have been shared nationally for their innovation and successful approach to patient engagement and quality improvement. She is married and has two sons.

Part I

The Road to an Official Diagnosis

TLJ: At what age did Rosario receive an official diagnosis of ASD?

DVP: He had several assessments, but it was not until his second complete evaluation that Rosario received the official ASD diagnosis at age 5.

TLJ: What led you to seek professional help?

DVP: After the results came back from a routine blood test during my pregnancy, they had me get a genetic screening and then an amniocentesis. The genetic specialist told me there was a higher percentage than average that my child could have a disability. But not to worry.

Rosario (age 5) on the playground at school in a Dolphin costume for Halloween with his mother DeeDee.

“We were pretty much in denial about the whole thing”

 

“We went through 15 caregivers”

His last caregiver had experience with children with special needs. She had a speech therapist coming to the house to conduct therapy for another child. The therapist shared to us her concerns about Rosario. At that point, I left my job to stay home and take care of him full-time. We were pretty much in denial about the whole thing.

“At the time, his pediatrician wasn’t concerned”

At the time, his pediatrician wasn’t concerned. He wrote on a prescription pad, “He does not have Autism,” Rosario was 2 years old. I believe they have better screening now. At that point, the severity of diagnosis was not out there yet.

Rosario (age 4) in costume.

“He does not have Autism”

I have a background with people with disabilities. Although the only experience I had with Autism, was with a severely Autistic child. This child didn’t communicate and was very much in his own world. Rosario didn’t present like that to us.

“Rosario didn’t present like that to us”

 

“He was very affectionate with us and interacted with us”

TLJ: When did Rosario receive his first assessment?

DVP: We started him in a pre-K program when he was 4 years old. It is where I noticed the difference between how he and the other kids handled transitions. A month after he started, the staff said they had concerns. He needed to get evaluated through the school district’s screening program. They referred Rosario at that point. The social worker at the school had a child on the spectrum and she was very gentle with us. She told us, “This doesn’t define him or your family.” I had recently given birth to his younger brother.

“This doesn’t define him or your family”

Rosario’s referral to their early childhood education program for children with developmental delays allowed him to get the services he needed which included:

  • DeeDee introduces Rosario (age 3) to his newborn baby brother.Speech therapy
  • Social skills group
  • Occupational therapy
  • Put on a waiting list for his first complete evaluation through our insurance

TLJ: What services were covered? And which services were out of pocket?

DVP: We had to pay for all his social skills groups and occupational therapy. Speech therapy was covered.

TLJ: Can you tell me about his first complete evaluation?

DVP: In his first evaluation, I started by sharing that he has trouble transitioning with me coming or going. This team wasn’t as complete a team as he had in his final evaluation. They said, “Mom just needs to calm down.” He ended up getting an anxiety diagnosis. They recognized that he had a language delay. His next round of services at least included a waiver program.

The waiver program included:

  • Rosario (age 6) walks for Autism.A case manager who worked one-on-one with Rosario in home (covered)
  • Social skills group (out of pocket)
  • Speech therapy (out of pocket)
  • Parent support (covered)
  • Put on a waiting list for a second opinion – second evaluation from a full team considered the “Gold Star” of evaluations at the time in the area

“Mom just needs to calm down”

 

“He ended up getting an Anxiety Diagnosis”

After his second complete evaluation, Rosario was finally diagnosed with ASD.

——-

DeeDee,

Thank you for sharing your story.

We look forward to learning more.

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