portraits of the jersey shore child with micro deletion disorder -

Child with Micro Deletion Disorder

(POTJS Note: As a father with a son with autism, I have a special affection for parents I see with children with special needs. I was at Argos Farms last weekend with the group Autism NJ Friends, when I saw a couple so intentional and so present with their daughter, who was so sweet, but had some delays. What really struck me, was how involved and truly tender the father was to his daughter, which was so beautiful to me. So I asked if I could talk him, and this is our interview…)

“Before we had our daughter, Jazznette and I didn’t have a care in the world. We were very successful and independent since we were young. We could eat anywhere we wanted, vacation anywhere we wanted, or go on a cruise. When Ellona was born, there weren’t really any signs that something was wrong right away. Her head was slightly deformed, so she had to wear a helmet for the first year of life. It was no big deal, they were just trying to mold her skull as she got bigger. When we took her to doctors, they started telling us she was delayed in certain areas. But once we started seeing more doctors, that’s when we started wanting to learn more about her situation.

“It turned out she has a micro-deletion disorder. It is so rare, that they benchmark off of her. Everything is almost a first. When they finally labeled it, it was a relief, because we had to jump through a lot of hoops with the insurance companies, because they needed a diagnosis to get treatment for her. There was a point where we could not get any treatment, except on a cash basis. I just wanted to get her the best services possible. We are in the middle of intensive therapy for her right now. We just completed our second week out of three, and she is doing phenomenal. Ellona is not afraid of hard work. One trait she picked up from her mother and I is a good work ethic, and we are very thankful for that.

“Since Ellona has come into our lives, she just leveled us beyond explanation. She has made us look at the bigger picture. She makes us appreciate the little things, things we would take for granted, like eating, communicating, things like that. When she communicates to some extent, it is a really big deal for us. When she does just the teeniest thing, like raise her hands to let us know she wants us to pick her up, or hug our leg because she has to go potty, it’s the biggest deal for us.

“Going from being able to do whatever we wanted, pretty much whenever we wanted, to now having a child with special needs was honestly one of the hardest things I ever had to face. Jazznette handled it with grace and elegance. She always looks for the brighter side of things. Me, I kept wanting to get second and third opinions. It was hard to accept. But once you accept that this is who she is, it gets easier to move in the right direction. So there was a bit of denial at first, but I didn’t know any better.

“Of course now I am in all the way. The first moment I got to see my daughter born, the first time I got to hold my first child, my baby girl, there is such a bond that is unexplainable. There is more love when she was born than I have experienced my entire life. It’s that love, that bond that no matter what the diagnosis is, you will do whatever it takes as a parent to give your child the best life possible. There is no cure for her diagnosis, but we give her as much love, and as much support as we can. I want Ellona to grow up being an independent girl, where she wants for nothing. I want her to have the same opportunities as all the other children will have. She is our girl, and I love her.”

~ Forked River

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