Education

‘Am I Invisible?’: Fresno family fights for equality for twin boys

Mother of Down syndrome boy wants him to attend Fresno school with twin

Jami De La Cerda has twin 10-year old boys, Sam and Elijah. Elijah has Down syndrome but wants to spend as much time growing up with his brother as possible and looks to higher level students to learn from. De La Cerda, who has extensive special e
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Jami De La Cerda has twin 10-year old boys, Sam and Elijah. Elijah has Down syndrome but wants to spend as much time growing up with his brother as possible and looks to higher level students to learn from. De La Cerda, who has extensive special e

On a sunny day in their Fresno backyard, Samuel and Elijah De La Cerda climbed up a ladder to a trampoline. Elijah let out an abrupt scream, signaling to his parents that he needed help to remove his shoes. Samuel patiently waited, already in his socks, keeping still until his brother was ready to jump along with him.

“Sometimes I forget that we’re twins because we’re so far apart,” Samuel said.

The 10-year-old brothers have many differences. Samuel has long brown hair; Elijah likes his short and covered with a hat. Samuel timidly shakes strangers’ hands; Elijah blows them kisses. Elijah has Down syndrome; Samuel does not.

And for the past several months, Samuel has had access to a public education; Elijah has not. The boys’ mother, Jami Hamel De La Cerda, has fought tirelessly to have the boys she birthed one minute apart attend the same school. Her goal is to provide them both with the same opportunities, despite Elijah’s disability.

But this story isn’t just about Elijah. It’s also about Samuel – and his question that shook his mother: “Am I invisible?”

“When Sammy looked up at me and said he felt invisible, it really broke my heart because, of course, I see him as successful,” Hamel De La Cerda said. “But when they do things together, everybody notices Elijah  He said, ‘people notice different, Mom.’ 

Now, as the family fights for Elijah’s inclusion in society , they’re also fighting to make sure that the twin they’ve always worried less about doesn’t feel left behind.

A fight for inclusion

Before Hamel De La Cerda became the mother of a special needs son, she was a special needs advocate. She teaches special education courses at Fresno State and is executive director of the Diamond Learning Center, an academic program for adults with disabilities that she opened in 2005.

In 2006, the twins were born.

“I knew it before the doctors – I just knew. I used to say if anyone is going to have a baby with Down syndrome, let it be me,” she said. “In the delivery room, everybody was crying when they found out. They were apologizing as if I was this distraught person. But I wasn’t at all. I was so happy with these babies.”

As an educator herself, she has fought for Elijah to have the same shot at a traditional education as his twin, valuing the social experience of school. Last year, the family moved into the Fresno Unified School District, and Samuel enrolled at Starr Elementary – the school nearest their northwest Fresno home – with no problem. Elijah could not.

Fresno Unified says the school cannot accommodate the education plan Hamel De La Cerda wants for him: to attend regular classes with students his age, with the help of an instructional aide for support, instead of being taught full time in a special education classroom.

He has Down syndrome. They’re just like normal people that learn a little harder.

Samuel De La Cerda on his twin, Elijah

Hamel De La Cerda filed a complaint with the state Department of Education in February, alleging that Fresno Unified spent months insufficiently assessing Elijah before district officials would consider enrolling him, and did not offer him any educational support in the meantime.

The district said Starr Elementary did not even have a place in a special education classroom for Elijah, and did not see the value in the brothers sticking together, Hamel De La Cerda said.

“I asked what happens to him while all this is going on, and they said they don’t know. Nothing was done. He was just forgotten,” she said. “It’s so hard for Samuel because he feels guilty, and it’s so hard for Elijah because he wants to go. That’s the part that really hurts us.”

Since September, Elijah has waved goodbye to Samuel as he leaves for school, and Samuel has wondered why he is allowed to go but his brother isn’t.

“It feels good to have your sibling at the same school. You don’t feel alone, you have somebody,” Samuel said. “If you see them playing, you can say hi or play with them.”

Fresno Unified spokesman Miguel Arias would not comment, citing student privacy laws, but said, “In every case, we work with parents to try to ID the best fit based on the student’s specific needs.”

Hamel De La Cerda has since revoked her complaint with the state, after a failed operation further impaired Elijah’s hearing. For now, he will attend classes at Hallmark Charter School in Sanger, about a 40-minute drive, in addition to home instruction.

This is not the first time Hamel De La Cerda has been disappointed – she has changed districts before. Tears well up in her eyes when she talks about a recent mother-son dance she attended at Starr Elementary with only one of her sons.

Typical students without disabilities benefit greatly from having children with disabilities in their classroom.

Joseph Bowling, California Special Needs Advocacy

Joseph Bowling, who has worked as an advocate for people with developmental disabilities for more than 30 years, helped Hamel De La Cerda file her complaint, and said her struggle is not uncommon. What school districts in the Central Valley consider to be inclusion for special education students sometimes only means the child is allowed to join the general student body for the Pledge of Allegiance, according to Bowling.

“Typical students without disabilities benefit greatly from having children with disabilities in their classroom. School is really about socialization – how to understand each other and to see there are differences,” he said.

“The tragedy is with people with disabilities in adulthood: they tend to be unemployed and isolated and living with elderly parents who can’t care for them, or in facilities. They have no people in their lives who are not paid to be there, and that’s because they grew up segregated by no fault of their own.”

Bowling’s passion for students like Elijah goes beyond his professional experience. As he and Hamel De La Cerda are discussing Elijah’s education at the Diamond Learning Center one day in February, a man walks in, wraps his arms around him and gives him a kiss on the neck.

It’s his younger brother, John Bowling, who is 51. John has Down syndrome and attends the center.

“I remember trying to go out of the house on a Friday night in high school with some friends to the drive-in, and my mother would say, ‘Take your brother.’ And I didn’t want to. But I did it, and I tried to give him all of the experiences I had growing up. I tried to teach him how to drive and it was scary for the both of us,” Joseph Bowling said, laughing.

“As a kid, it’s not easy to have a sibling with a disability. I never really thought of my brother as being different than anyone else, but there were times when that was pointed out for me.”

It hasn’t been easy for Samuel, either. While Hamel De La Cerda was worried about Elijah being forgotten, it was Samuel who really felt that way.

Am I Invisible?

Elijah has limited speech, but Samuel knows how to communicate with him.

“Ever since they were babies, when one cried, the other cried – even if they weren’t in the same room,” Hamel De La Cerda said. “They have that twin thing.”

Samuel knows how to communicate with other children about his brother, too.

“This girl at our school was like, ‘What’s wrong you?’ ” Samuel said. “And I said, ‘He has Down syndrome.’ They’re just like normal people that learn a little harder. You have to teach them slower so they get it. It’s a disability.”

Samuel said he likes being a twin, but sometimes it’s hard to be Elijah’s twin. For example: “Like, we were at a birthday party, and all of these people hugged him, but then they just shook my hand,” he said.

When Samuel told his mom how he felt, she was shocked. Together, they channeled his feelings into a book. “Am I Invisible?” will be available in libraries across Fresno County this month, and is about how it’s easy to get caught in Elijah’s shadow.

I always tell them that equal doesn’t mean that you both get the same. It means whatever you need to put you on the same playing ground, we’re going to make sure you have.

Jami Hamel De La Cerda, the boys’ mother

“Have you ever felt invisible?” the book asks. “I can see me, I can hear me, but it feels like everyone sees right through me. They look right past me like I’m not even here.”

Dr. Cynthia Curry, director of genetic medicine at Community Regional Medical Center who has cared for Elijah, said the book will offer insight on an important, but often neglected, topic.

“The ‘invisible’ child phenomenon is all too common in families where a disabled child requires the parents’ disproportionate energy and care,” Curry says in the book’s foreword. “Siblings will feel heard after reading this book.”

The book has a happy ending, with Samuel realizing that he and Elijah are each special in their own ways – and that Elijah needs the extra help.

“It’s a real feeling for these kids. Some of these guys like Elijah go through so many painful procedures, that you forget  ” Hamel De La Cerda said. “I always tell them that equal doesn’t mean that you both get the same. It means whatever you need to put you on the same playing ground, we’re going to make sure you have. And (Samuel) just laid it out for me and said, ‘This is what I need. I need your time.’ 

Daniel De La Cerda, the boys’ father, said the book wasn’t easy for him to read – but that he hopes it’s empowering for Samuel and many others.

“As a parent, you don’t want any of your children to feel any less than their siblings, and that happened,” he said. “But what’s wonderful is that he can express those thoughts and feelings in a book. It’s a confidence builder for him to make such an accomplishment and in turn, help other kids who have that type of situation who can relate.”

A line in Samuel’s book sums it up: “I am a twin,” he writes. “I am part of two – but still one.”

Mackenzie Mays: 559-441-6412, @MackenzieMays

For more information

To learn more about the book “Am I Invisible?” visit dlclife.org or contact De La Cerda at SamNJam@dlclife.org.

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