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Advocating for My Daughter with Special Needs

Advocating for My Daughter with Special Needs


As told to David Paone

I'll start at the beginning: I was born in Queens in 1965 and moved to West Hempstead about two years later. I met Paul while we both attended Queens College, but he repulsed me, in true romantic comedy fashion. Eventually we became best friends, but when I set him up on a blind date, I knew I had made a mistake and wanted him for myself. We were married on Dec. 31, 1989. I had told him if we didn't get married in 1989, we were never getting married. Beginning a marriage with an ultimatum is always a good idea. We weren't planning on third child after Katy and Paul, but in 1999 I heard on the radio that if we were to conceive a child within the next few days, we would most likely have a Millennial, born by Dec. 31. We got on that right away. Peri was born on our 10th anniversary. We didn’t expect what lay before us.

Much of Peri's young life has included medical emergencies and hospital stays that last for months. By the time she was 2, she had both CPR and the Heimlich maneuver performed on her twice, including by Paul.

Sometimes I have flashbacks of them cutting her dress open in the ER and pounding on her.

Many children born with nemaline rod myopathy, a form of muscular dystrophy, don't survive past the age of 7. Peri has survived one muscle biopsy (at 9 months old), nearly 25 sets of ear tubes, more than a dozen bronchoscopies, a tracheotomy, the removal of her tonsils and adenoids, a broken femur, two broken tibiae, and eight scoliosis surgeries.

Physically and medically, Peri's obstacles were immense. But one early piece of advice we took heed to was to "maximize her potential." We've always been very positive with Peri. We haven't said, "she's never going to do this." We always assume she can do it.

That approach has worked. Peri made honor roll every quarter in sixth grade. The year before, she won the excellence award for her class at graduation. More recently she was salutatorian at her graduation from Henry Viscardi School in Albertson.

I didn't know it at the time, but all during my young life I was learning the skills that enabled me to care for such a child.



My sister was book smart. It was her job to study all the time and I took care of the house. I cooked and cleaned while my parents were at work. But I also learned how to call companies on the phone if I had a problem with their products. I learned what to say to get them to send me a replacement at no charge.

All of this repeated itself when I had to deal with insurance company appeals and the uncooperating public school system. My knowing how to finagle has gotten Peri services she wouldn't otherwise have had. 

In 2013, we had the opportunity to meet David Wright of the New York Mets at Citi Field. I love David Wright; he's a mensch.

David walked over to his locker, produced an All-Star game jersey, signed it, and gave it to Peri. I would have been happy with a sock.

This past September he actually called Peri on the phone to talk about a gift she had sent him. Then he mailed her a signed baseball bat. Gotta love David Wright. He didn't have to do any of that.

Currently, Peri is a freshman at Adelphi University in Garden City, as a business marketing major. I attend class with her some days and a nurse we hired on other days.

It's like I'm going to college again. At first, I paid attention to the lessons and even asked questions, which really bothered Peri. So now I sit in class, next to Peri, watching Netflix on my phone. I watched all of Orange Is the New Black and now I'm up to Mad Men.

Sometimes the teachers will talk about something from 1912 and give me a nod and I'll give them one back. The worst part, however, is while Peri is on a feeding tube and losing weight, I think I'm gaining the Freshman 20.

The plan is for Peri, and probably me, to go all the way to an MBA.

I've been helping her with her papers, but I can see her getting stronger and stronger and soon she won't need any help.

One day Peri will rule the world.

 

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