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September 15, 2019

A Mom’s Journey with A Son Who Has ASD (Part III)

An Interview with DeeDee Velasquez-Peralta, LMSW

Part III

Being Present With ASD

A ceramic yellow plate with Rosario's handprint (age2).

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.

“We never wanted it to be an excuse for him, everyone learns differently”

TLJ: Universally, I believe all children are unique. What strengths have you witnessed that have emerged for Rosario because he has ASD?

DVP: He is very empathetic towards people and will get emotional about it. Even now as a teenager Rosario will take the time to ask, “how was your day mom?” And he will ask his dad the same thing when he gets home from work. It always brings a smile to my face. Rosario views Autism as a positive. We intentionally were very involved in our local Autism Society. They had various social activities that we attended regularly since he was very young. He would look forward to these fun events. Rosario is not ashamed of who he is, he is proud. It wasn’t until he heard another parent say to him in an angry voice “YOU NEED TO CONTROL YOUR AUTISM!” that he learned that not all people felt that way about children and adults who sit on the spectrum.

“A lot of people with kids on the spectrum can end up being socially isolated”

TLJ: How have you managed to stay so grounded while walking this walk?

DVP: It was imperative that we found support systems and groups. These wonderful people allowed us to not feel so alone in it all. Belonging to groups such as the Autism Society and our coffee support group for moms, helped us connect with others who were going through similar challenges. We could talk openly. Sometimes our issues would get minimized by other parents who had not experienced what we had gone through. I understand how that can happen, but a lot of people with kids on the spectrum can end up being socially isolated. Individual therapy can be very helpful especially during times of crisis. I am extremely thankful that I have a supportive partner.

“I am extremely thankful I have a supportive partner”

TLJ: How old is Rosario now? And what does his life look like today?Rosario (age 17)

DVP: Rosario is now 17 and a senior in high school.  Aside from his IEP case manager through the school that he meets with an hour or two a month, and his private counselor who specializes in ASD who he sees roughly every other month, his life looks pretty much like any other typical teenage boy. He and our family still utilize tools that we have learned over the years, and it has just become our way of life.

“He met friends at school through similar interests”

Rosario still enjoys reading and playing video games especially since he is so involved in the Gamer’s Club at school. He and his friends get together to play dungeons and dragons. They go to the movies. He attended his Junior Prom. Recently, when his friends were together at our home, I asked Rosario why they hadn’t eaten yet. He said it was too late to walk anywhere. I asked why they didn’t order in? He said,

“My friends are not the kind of people who want to talk to people when they come to the door with food, mom. They are not comfortable with that, I am probably the most comfortable doing that in our group. They are not”

So…I believe Rosario is the most social in the group…I had to laugh a bit inside, I never thought my son would be the most social in a group.

Currently, Rosario is working as a summer camp counselor which requires him to interact with others. He previously attended this camp every summer since he was 8 years old. Between first and second grade we got him a refrigerator box so he could have a safe space to go to help manage sensory issues. (the refrigerator box became a big hit with the other children!) As he got older, he found his own safe spot he could go to, to manage sensory overload. We would meet with his counselor regularly to help deal with any issues that may have come up. It has been a natural progression for Rosario to become a counselor at the camp. Since he can now recognize some children who may sit on the spectrum, he can in turn help by being sensitive to their issues.

TLJ: What are Rosario’s plans for the future?

“It started out as a year long road trip, but when they started to calculate the expenses, they decided on a two-week trip”

DVP: He is now talking about college. He plans on starting out by attending one of the local community colleges. He and his buddies have plans for a road trip after graduation. It started out as a year-long road trip, but when they calculated the expenses, they decided on a two-week trip. I am excited for him to have all of these new experiences.

TLJ: Looking back, what tools that you used stand out as being extremely helpful?

Rosario at the ZooDVP: Some of these tools we learned about and some we created:

  • Stop – Breath (count to 10) – Think
  • Imagery – for example: when Rosario was little, we recorded a calming activity and something he enjoyed such as us riding on the sky tram at the zoo and had him focus on how he felt. We then gave it to his teachers on a small device (a nano at the time) to use when needed to help with emotion regulation
  • Cranky cream – we had a “special” lotion to rub on his arms to help pull the cranky out
  • Zoo outings with our family and the Autism Society – a safe place to be outside and be social
  • Plan for the worst and hope for the best

TLJ: For any parent who has a child or teenager who has been diagnosed with ASD, do you have any thoughts or suggestions?

“Your kids can do more-we have always had high expectations for him-he met them and exceeded them”

DVP: When Rosario was first diagnosed, a social worker gave us the poem “Welcome to Holland”.  It talks about a trip you are about to take to Italy and everything you look forward to doing and seeing in Italy. When you then get off the plane to Italy, you realize you are in Holland. It ends up that Holland is different, but it is just as beautiful as Italy.

Rosario and his little brotherSome suggestions:

  • Ask questions – you have to be your child’s advocate even if it feels like you are constantly fighting to get your child’s needs met
  • You need to find at least one advocate on the team assigned to your child
  • Be present and show up
  • Have open and consistent communication with your child’s teachers
  • Ask all, including yourself, to engage with your child where she or he is at in that moment, be present with them in that moment
  • Don’t be afraid to have other children – Rosario and his brother have learned so much from one another along with how to be kind and compassionate human beings

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DeeDee, thank you for sharing your story.

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