Most of us have those “woe is me” moments when it seems everything is going against you.
From now on, when those moments of woe fall on my head, I’m going to think about Terry and Ricardo Munoz and their son, Miguel Angelo.
Miguel is 27 years old and has Down syndrome, autism, epilepsy and seizures. The 4-foot-10, 70-pound man doesn’t speak. When he was 8, he had 67 grand mal seizures within eight weeks. He hasn’t had anything that severe lately, but still takes injections four times a day to control his seizures.
The seizures took away his ability to speak in sentences and shook his 50-word vocabulary.
The South Pasadena family knows they have faced challenges that many of us would drop to our knees to avoid.
But they are also grateful.
“Before he was born, the doctor told me that he had Down syndrome,” Terry Munoz said. “Then they said he probably would not live a year. He’s had seizures where doctors said he might die at any time.
“To us,” she added, “he is like a super hero.”
I’d say that Mom and Dad are pretty super, too.
Ricardo is 78 and a retired administrative court judge. Terry, at 72, was executive officer for the city of Los Angeles.
They have four grown children – the first three are out on their own. Miguel — the last of her children — was born when Terry was almost 46. Two of their grandchildren are autistic, but are not experiencing the same kind, or severity, of problems.
“Both my husband and I share that we feel very blessed having Miguel,” Terry said.
“He has shown us unconditional love and brought so much joy and happiness into our lives,” Terry continued. “Yes, we share that like every other family, we have had our ups and downs and almost lost Miguel so many times, but we feel so fortunate to have him in our lives.”
Before I go any further, I want to call in Diane Cullinane, retired head of the Professional Child Development Associates — a nonprofit which provides a wide range of services for autistic people.
Cullinane, who lives in South Pasadena with her husband Bill, defines autism as primarily a social iteration or repetition — apparent early in life, usually in the first few years. There is still no known cause, she said.
“There is a wide range of diversity in how it presents itself to each child — informing social communication, eye contact, sharing attention, verbal communication and gestures,” said Cullinane, who said therapists share the journey with the parents and learn to celebrate the small victories. (Cullinane was not involved with Miguel, Terry Munoz said.)
Therapists and special schools have been crucial for Miguel. Terry said that without therapists, Miguel would not have walked at 4 ½ years old. He is currently receiving help on behaviors such as spitting out his seizure medicines, and pinching when he wants to get out of doing something.
Miguel went to schools which served a variety of communities. When he was young, Terry said that Miguel was so tiny that she had to have a baby car seat, and he sometimes slept because of his epilepsy medicine on the hour-long trip to his school.
He currently does not go to school, which takes students up to 22 years old. He used to go to an adult day care center in Alhambra, but that has been closed because of the pandemic. He does receive weekly work activities until they are able to open again.
He received training as a paper shredder (as well as other jobs) while he was a teen in high school.
The Munoz family has had a caregiver for about 30 hours a week during the pandemic, and they sometimes sleep in the bedroom next to Miguel’s in case of possible seizures and because of his erratic sleep pattern.
The pandemic has been particularly rough on him, since the closing of a day care center meant he could not see his friends. So his weight dropped from 83 pounds to 68 because he would not eat. Now, a group of a few friends gets together and eased that situation.
Terry said that her son doesn’t really understand what the pandemic is all about. She explains it sometimes as a “big boo-boo.”
Munoz cited South Pasadena as the “best community ever” in helping her out — pointing to the D.U.D.E.S. and Cindy Knight. She said they even go to Trader Joe’s to get the peach mango juice that Miguel likes.
Miguel has rules. He has to take his dishes to the sink and he has to pick up his clothes (how many adults don’t do that, Terry joked).
“I want him to be as independent as possible,” she said.
He not only walks, but he can run and has even participated in the Special Olympics. He’s so friendly that — on his first race — he wanted to shake the hand of everyone who lined up at the starting line. Now, he’s winning gold medals.
With all she has to do, Terry should be saving her energy. Instead, she is giving back to the community. She has served on the local Special Needs PTA, and chaired an advisory board in the West San Gabriel Valley; and she is a past board member of the Eastern Los Angeles Regional Center board where she served as chair and treasurer.
Janna Philpot, the president of the Vecinos — which fosters stronger Latino connections with the city while promoting education and Latino culture — asked Terry if she knew anyone who could serve on a Special Needs Equity Committee being formed by the South Pasadena Unified School District.
Terry said she’d serve.
She said that it is important to educate not only those who have autistic children but also the community.
“We don’t sugarcoat anything,” she said of how she and her husband approach the subject.
They bring their knowledge, they listen and then speak up when needed, Terry added. Speaking up for others means speaking up for themselves.
Despite all the obstacles — and despite all the long hours — one thing remains a constant for Ricardo and Terry Munoz.
They love their son.
“He’s our little angel,” she said.
SPUSD Forming Special Committee
Terry Munoz has volunteered to be on a committee being formed by the South Pasadena Unified School District to take an in-depth look at pre-referral and special education practices in the district.
There will be about a dozen members who will work on the committee, for a period of just over two years.
“We want to look at these areas with fresh eyes,” said Nancy Goldstein, program specialist at SPUSD, adding that the district wanted to include all stakeholders involved in the process, including parents. “We’re going to be looking at practices and policies through a cultural diversity perspective.”
The committee was formed after a mandate from the California Department of Education that Latinos are overrepresented in the SPUSD special needs population.
Goldstein said that there are a lot of variables in determining these numbers.
“What the committee will be doing is a part of a quality assurance process,” Goldstein said.
Munoz said that she and other members of her special needs support group “provide that educational tool based on shared experiences” for this kind of endeavor.
“We get it,” Munoz said. “We understand the budget limitations for special needs programs. But we recognize when priorities need adjusting and we speak up for children with special needs. We parents pitch in together. We have found that our special needs support group provides that educational tool based on shared experiences.”
— Andy Lippman
