Real Moms Share: Deb Discenza

Deb Discenza with her husband and daughter.

Deb Discenza shares about starting motherhood with a 10 week “Preemie”.

Deb Discenza is an author who contributed to this issue’s “Real Moms Share” section. We asked her to give us an insight into herself, as well as into her life raising her daughter, Becky. 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.

DEB DISCENZA: Our family consists of my husband, Gregg, our daughter, Becky, 10, our 7-month old kittens, Baker and Stormy, and myself. Becky is in 4th grade in our district’s advanced academic program (AAP) school, is holding her own and has a solid set of friends. She has come a long way from being born 10 weeks early and working through a Neonatal Intensive Care Unit stay as well as developmental delays and accompanying therapies, a diagnoses of Asperger’s Syndrome, ADHD, Sensory Integration Dysfunction, Feeding Aversions, Developmental Motor Coordination Disorder and asthma.

PSN: Tell us a little bit more about Becky’s (early start, NICU Journey) diagnosis and personality.

DD: Becky was born 10 weeks early after my water broke while in the car on a large family outing an hour outside of town. Thinking that I, embarrassingly, had a bladder accident in the car, I quickly discovered the truth and was alternately crying, apologizing to my unborn daughter and trying to use my cell phone to call my family members in the car. I spoke to two ladies in a store office and asked if could I borrow their phone to call my doctor. I had them rush out to the car to inform my husband of the situation as the doctor’s office answering service started to “page a doctor”.

Fast forward to the hospital: I was given shots to stop the labor, a shot to mature my daughter’s lungs, and put on strict bed rest. Thirty hours later, I was told by the labor and delivery nurse I would be delivering that night. It was 20 minutes to midnight on Grandparent’s Day. Becky was arriving so fast that the doctor on duty was still parking her car at the hospital. A doctor on the floor had to step in and a short while later Becky was born. A nurse held my daughter up so I could quickly see her then whisked her off to the NICU with my husband in tow.

Becky’s NICU journey was definitely a “rollercoaster” despite her strong start. After the “NICU Honeymoon”, Becky was working through a number of breathing issues that required her to be on a CPAP and “on and off” of oxygen. Her heart had three “holes” that were common (and expected to close), but she may end up needing heart surgery. She received my breast milk through a feeding tube for the first several weeks of her life and eventually took a bottle of fortified breast milk. Feeding issues that included a problem developing a solid suck/swallow reflex were an issue, as was GERD. Jaundice and anemia were also issues that were being addressed as they worked through tests on Becky’s eyes (she was at risk for Retinopathy for Prematurity), a hearing test and a cranial ultrasound for any brain bleeds. Everyday was different and while we saw improvement over time, we also saw setbacks including a very serious infection. Bit by bit I gained a little confidence by talking to her, singing to her, and doing Kangaroo Care.

After 38 days in the NICU, Becky came home. She was required to be on oxygen and a monitor and was watched over by a pediatrician, cardiologist, pulmonologist, ophthalmologist, and a neurosurgeon. With Respiratory Syncytial Virus (RSV) starting as she came home, she received monthly Synagis injections until mid-spring to help her immune system fight the deadly virus should she contract it. My daughter’s feeding issues increased 5 days post-discharge and this landed her back in the hospital for 2 days. Within a couple of months, though, Becky shed the medical equipment and really “took off” as did my confidence in caring for her. The NICU experience has left a permanent mark on my husband and myself. Despite family and friends trying to tell me “she is out of the NICU and doing great, so you can relax now” my gut told me otherwise. I am glad I stuck to what my gut was telling me because a mother’s instinct is the best advocate for any child… and especially a special needs child.

Fast-forward through the next 5 years and Becky was evaluated and qualified for Early Intervention for issues involving gross motor, fine motor and speech and feeding. The sensory stimulation therapy we gave her (through Early Intervention), plus a local kids sensory gym, rocketed Becky forward and she graduated the program within 7 months. During preschool we discovered a repeated need for help and so she was entered into ChildFind Preschool to receive help with speech (she wasn’t talking in class) and fine and gross motor activities. Kindergarten brought Becky into the world of the mainstream public classroom. At her first IEP meeting, I was clear with the 8 people around the table that I was concerned that Becky may be doing well in school but that my gut told me something wasn’t right. I had voiced this so much over the years, but received little in the way of understanding. Becky was very bright (she started reading at 2-3 years of age) and in Kindergarten was reading middle school and some high-school level books. She also had a love for chemistry, astronomy and other hard sciences. She seemed to still maintain parallel play with other children and talked to adults like a “little professor”. She continued to have issues with feeding, fine/gross motor skills and I felt, at the time, with her attention span even though ADHD had originally been ruled out. When the school psychologist pointedly asked me if my daughter ever looked me in the eye, I was shocked. Diagnosing autism? Now? In Kindergarten? I stammered that “yes, she did look me in the eye”. Testing was suggested and I agreed wholeheartedly. Yet nothing prepared me for the day the results came in and I met with the School Psychologist. Becky indeed had a high IQ and they suspected she had Asperger’s Syndrome. I left the meeting with tears in my eyes and spent the day alternately crying and calming down.

Becky was officially diagnosed with Asperger’s Syndrome and off we went with social skills therapy, occupational therapy, hippotherapy, nutritional therapy, a feeding program and more. In second grade, we added Attention Deficit Hyperactivity Disorder to the plate and medication was started. In third grade we added Developmental Motor Coordination Disorder.

We had always told her IEP team that we wanted to make sure Becky was getting enough educational stimulation given her intellectual interests. They had her work with the part-time advanced academic program at the school and she thrived. In second grade she was tested, and was accepted, into the full-time advanced academic program (AAP) for our school district. I was hopeful that she might find some real friends in the classroom that had a similar personality as she did. The non-AAP program was leaving Becky with no friends at all. It ended up being the best decision ever because Becky now has a number of solid friends and she is thriving in a classroom environment that keeps her on her “mental toes”.

PSN: Share with us something YOU, personally, had to overcome by being a mother to a special needs child?

DD: That taking a “therapy break” is not only important, it is necessary. The therapy treadmill can really drain everyone in the family, especially the child. Giving my daughter time to focus on friends and “just being a kid” has been eye-opening. For the longest time we have not known a “normal life” and providing ourselves with self-care and self-nurturing was essential to our long-term happiness. Therapy will start up again, but this time, on our terms.

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

DD: Feeding! Having a child with a very limited diet wreaks havoc on socialization, the grocery bill, and sanity. While I am grateful we did not have to bring our daughter home from the hospital on a feeding tube, it suddenly dawned on me that we were dealing with a much more complicated situation than your average selective eater. Thankfully, we had one feeding program in place and Becky’s diet has expanded nicely. But, we are still working through a lot of challenges. It hurts, though, when we get judgmental looks from other parents as our kid eats a huge plate of pasta and they believe that we are just bad parents or they tell us if we “just gave Becky to them for one week they would ‘fix her’”. Our society still has a long way to go in terms of understanding conditions such as autism and what the word “spectrum” means.

PSN: What has school/education been like for your child?

DD: Academically, Becky has been very strong in language arts, social studies and science. Math has had some struggles, though. Our area is known for its school system, high grades and testing scores. Yet, we choose to focus not on the love of learning compared to perfection in academics. I am quick to step in and ask the teacher about ways to help Becky. I make sure to volunteer in the classroom as room parent, or in the school library, etc… so they know that the family supports her school and her hard work. I am not just Becky’s mother who is expecting things from the team…they know I am a full member of their team helping Becky.

PSN: Do you have a proud moment you would like to share?

DD: The day Becky’s feeding therapist came out of the session and told me my daughter had eaten popcorn shrimp. I was beyond shocked. I started to tear up… it was like I could honestly see a small light at the end of a very long, very dark tunnel. Becky was 6 years old at the time, and we had been working through feeding issues since her birth.

PSN: What kind of life do you envision for your child’s future?

DD: My daughter’s future is definitely on my mind. Part of me desperately wants to protect her from the bullies of the world. I imagine Becky will require some organizational assistance throughout the rest of her education and her chosen career and she will be on various medications the rest of her life. With help and with some understanding for her quirks, we pray our daughter finds a field that fires her passion in whatever way possible. I pray she starts to work around the feeding aversions and also works on a regular exercise routine to keep her healthy and fit. As we hoped for a happy and healthy baby ten years ago, we pray for the same into adulthood.

PSN: Share with us some life lessons you’ve learned on your journey raising a special needs child? What do you know now that you wished you had known earlier?

DD: Well, my daughter recently attended the Washington DC Air & Space Museum’s adult lecture astronomy series that was put on through a partnership with Harvard University and NASA. Becky went toe-to-toe with the Harvard/NASA Astrophysicist grad student and her advisor over habitable planets. My jaw dropped as I watched my daughter (special needs and all) hold “her own” and ask a very pointed question. She did this with incredible poise that pricked my eyes with tears. All the hard work that we have put in over the years (and still do) is more than worth it. We are giving our daughter the tools she needs to function in a world that is slowly starting to appreciate quirks and challenges as gifts.

PSN: BOOK/ADVOCACY: You’ve written a book “The Preemie Parents’ Survival Guide to the NICU” and online support through “Preemie World”. What was your impetus/spark/motivation for writing your book (what was the moment that made you decide to take action)?

DD: I have done a lot of advocacy work surrounding a few core issues in prematurity: 1) Respiratory Syncytial Virus (RSV) awareness and making sure preemies have access to life-saving medications. 2) making sure that parents have access to news, research, developmental resources and more. 3) public awareness of the issues surrounding the mental health needs of families in the NICU and after. Parents are often coping with the scars of the NICU and beyond that can lead to depression, PTSD and ultimately divorce/break up.

The book has the same passion as the advocacy work – to help support families in the best way possible to help them help their child. Nicole Conn (co-author) and I wanted to re-think the preemie parent books out on the market and, as a result, we have created something special and extremely useful. This is the book Nicole and I would have wanted to have during our NICU journeys. It has received rave reviews from neonatology journals/publications both nationally and internationally.

PSN: What are some of your main goals or mission with “Preemie World”?

DD: PreemieWorld creates tools for the preemie parent and preemie professional communities. Whether it is our Preemie Parent’s Survival Guide to the NICU, our little man institutional license editions for professionals, or even our free printable newsletters, we feel that information on both of sides of the NICU, at discharge and in Early Intervention is wanted and essential.

PSN: In conclusion, is there anything else that you would like to share with our readers?

DD: PreemieWorld’s newsletters are available for free subscription to your readers at https://preemieworld.com/subscribe-preemie-family/ (for Preemie Family) and https://preemieworld.com/subscribe-preemie-pro/ (for Preemie Professional).

PSN: Deb, thank you so much for sharing with us your experiences and the lessons you have learned raising Becky.

Photo Courtesy Deb Discenza

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This post originally appeared on our January/February 2014 Magazine

Real Moms Share: Deb Discenza

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