Nisha Morris Shares About “empowering her child”

Nisha Morris contributed to this issue’s “Real Moms Share” section of the magazine. We asked her to give us an insight into herself, as well as into her life raising her daughter, Nathasha, who has (CCHS) Congenital Central Hypoventilation Syndrome. We asked her a series of questions; some serious and some “just for fun”. See what she said….

PARENTING SPECIAL NEEDS: Tell us a little bit about yourself and family.

NISHA MORRIS: The Morris family consists of Randy, Nisha, Nicoletta and Nathasha. We live in beautiful Orange County, CA. Randy is self-employed as a computer programmer for Thermal Web Creations, LLC and Nisha is a public relations professional for a computer software company. Our family is very close – with love, respect, and faith at the core and our children as the focus of our household.

PSN: Tell us a little bit more about Nathasha’s diagnosis and personality.

NM: On October 6, 2008, my husband and I welcomed a beautiful (6.8 lbs, 19 inches) baby girl named Nathasha Saroj Morris. Immediately, we discovered that she had Congenital Central Hypoventilation Syndrome (CCHS), a very rare genetic condition whereby the brain does not send the necessary signal to initiate breathing only while sleeping. So, every night, at bedtime, Nathasha is placed on a life support machine which stimulates artificial breathing (ventilator). This machine, along with several other medical-monitoring pieces of equipment, keeps her alive. The moment she awakes, she is removed from the ventilator and is able to breathe on her own… again.

PSN: What has therapy (Early intervention, pre-school or school) been like for Nathasha?

NM: Since Nathasha was limited to the home, and with monitored interaction for the first few years of her life, we found that the lack of peer interaction adversely affected her social skills. Last fall, we enrolled her in preschool and she’s just blossomed! She is much more social, talkative, interactive and is making many friends.  We are active participants at her school – we partner and educate parents, teachers and officials at her school. The more they know about Nathasha, her condition and restrictions, the more successful    she will be.

PSN: What have been some of your biggest obstacles/challenges raising Nathasha?

NM: The biggest challenge has been to manage several insurance agencies (government and private) to ensure that Nathasha has the very best care possible. There is so much paperwork involved– and it’s a never ending cycle.  I have to constantly fight for my daughter’s rights to keep her benefits, justify her need for equipment, and make sure these agencies realize that my daughter is a person – not a number.

PSN: What do you wish people understood about Nathasha and special needs?

NM: I wish people would understand that everyone has limitations. Some are hidden well, while others are more apparent. Regardless of our limitations, we should respect and be kind to one another. It’s just that simple.

PSN: What advice would you give to new parents of children with Congenital Central Hypoventilation Syndrome (CCHS)?

NM: The best advice I can give other special needs parents is to educate others about your child – with LOVE. Sometimes, people will say things that are offensive – whether on purpose, out of pure ignorance or because they just don’t know how else to express themselves. It’s important to always respond with love. It’s an opportunity to educate, explain and enlighten others about your child, their struggles and their victories. I know Nathasha is listening to me as I explain to others about her condition – and I’m hoping that she will be kind, confident and loving when it comes time to explain her condition, herself.

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