Putting the Pieces Together for Special-Needs Children

NEWS
Typography

Many of us remember 2012 as the year Superstorm Sandy turned the hum drum of our lives upside down. However, for Arverne resident Trishia Bermudez, another storm began in the spring of that year. Twenty weeks pregnant, Bermudez was excited about the little package in her tummy. However, her excitement morphed into shock when she went to a routine doctor’s appointment. There was a problem.

“They discovered that my baby’s kidneys appeared to be enlarged, which is sometimes a sign of a kidney disorder. They said that in the worst case, it could mean death in the womb or within the first year of life,” Bermudez said. “I was told that I had the option to abort. I went home and cried. However I had this conviction, despite all my anxieties, that God was in control over my body and my baby. I refused and stayed the course.”

Bermudez shared that it was a difficult pregnancy with weekly trips into Manhattan to her gynecologist at the Center for Prenatal Pediatrics at Columbia University Medical Center. After undergoing an amniocentesis procedure, which requires inserting a long needle into the abdomen to collect amniotic fluid, the results were encouraging: no genetic mistakes could be seen. This ruled out the possibility that her baby would have Down syndrome, Turner syndrome, or any of the dozens of other conditions that are caused by genetic mistakes easy to spot on a slide.

However, then Bermudez’s doctor also offered to analyze the baby’s DNA using a computer-based technique that probes even deeper into the genome. Microarray analysis, as it is called, can detect mistakes in genetic code that are one hundred times smaller than those seen under a microscope. These tiny deletions and duplications are the sort that have been linked to autism, developmental delays, schizophrenia, and other complex conditions.

She agreed to the test. This time, the scientists did find something alarming: a missing piece of DNA on chromosome 3. This was a bad sign, but precisely what it meant for the baby was unclear.

After a rocky, emotionally draining pregnancy, little Matthew was born at three pounds, 15 ounces on October 24, 2012. Bermudez had to leave little Matthew in the Intensive Care Unit at the hospital, and make the long trip to her Arverne home without her baby. Then Sandy hit.

“I didn’t evacuate. Here I am in my house, watching the storm, no lights, no heat and worrying about my baby,” Bermudez said.

After Sandy, Bermudez and her baby reunited, but the after-effects of her personal storm with having a special-needs baby accelerated. Bermudez, who has an MBA in financial planning, repeatedly tried to return to work. “We needed the money. I put Matthew in several daycares, but he was literally kicked out,” Bermudez said. “I was told that they couldn’t handle the level of care he needed. I contacted the hospital’s social worker for some guidance. All the daycares they recommended all had the same response: We can not take him in.”

Bermudez then stopped working entirely and dedicated her life to caring for Matthew. “As Matthew got older, it became harder. I reached out to many organizations for help, searching for what’s best for my son. As I have been putting the pieces together, I find that there isn't a resource for those that fall under the general umbrella of special needs,” Bermudez said.

She founded the nonprofit, Perfect Piece of the Puzzle, Inc., (PPoP) with the mission to help financially-disadvantaged families get the best services for their special-needs children.

Bermudez just established 501c status for PPoP last month, and with her newly established board, is now fine-tuning their goals. “One of our initial goals will be finding financial supports for parents who want to get their special-needs children in private school. It’s an expensive process, where you have to pay an attorney to represent your child in a hearing with the Department of Education (DOE), to prove that public special education schools do not have the appropriate level of care or instruction needed for your child,” Bermudez said.

As for Matthew, today he is five and attends school at a special program in a hospital in Bayside, Queens. He is unable to feed himself, and has multiple health issues. However, Bermudez is worried as he is phasing out of the program. “There is nothing in Rockaway. I am preparing to fight the DOE to pay for private school.

I want to be a guide for parents. It is not an easy task to support your family, as well as giving our children all they need to flourish,” Bermudez said.

BLOG COMMENTS POWERED BY DISQUS
Sign up via our free email subscription service to receive notifications when new information is available.