 One month ago, my very dear friend Lara Hogan was interviewed by NPR for a piece on the connection between high risk pregnancies and heart disease. This interview explored the fact that “women with high risk pregnancies are up to eight times more likely to have heart disease later in life”. This is something we all need to be more aware of. Lara’s heroic story of her dramatic and intense delivery and subsequent posteclampsia is a story we should all read and become familiar with. And as Lara stresses, it’s so unbelievably important that we care for not only our babies after childbirth, but ourselves. Bottom line mamas: pay attention to your heart’s health.
SSP: I understand you had been treated for hypertension prior to your pregnancy. How did that affect your pregnancy, and were you monitoring your blood pressure throughout? I went to a high risk doctor early on in my pregnancy because of my age and because of my genetic hypertension, and as we were watching my blood pressure we decided I’d take blood pressure medication to keep my numbers in check. We were monitoring it closely at both the OB and high risk office. They explained to me their concerns and what I needed to look for in terms of preeclampsia warning signs. Two times during the pregnancy I had to check for protein in my urine, which is the key sign for preeclampsia. Those came back OK and it wasn’t until 36 weeks that everything changed. SSP: Where there any complications or side effects that you experienced during your pregnancy? I had the craziest, biggest swollen feet you’ve ever seen, which is something that many women get. I don’t know if it was necessarily because of high blood pressure, but I tend to swell and think it’s linked my blood pressure. They were crazy huge and very uncomfortable. I had to buy a size 11 pair of vans to fit my feet. Other than that I didn’t notice anything else. SSP: When did you notice a drastic change, and how did that affect your delivery? So it really was the first day of turning 36 wks. That evening we hosted a birthday party at my house and everybody fell asleep watching a movie afterwards. I felt a little uneasy…I got up and started cleaning the kitchen, and while cleaning, I could literally feel my blood pressure rising…which is not something most people can physically feel. It’s hard to explain what it feels like. My heart was fluttering, my body was a little flushed and tingly. I decided to check my blood pressure. It was 190 over 120, an extremely high number. Normal is somewhere around 120 over 80. I woke my husband up and told him we needed to go to the hospital. I knew something was wrong. My OB had told me at my 1st appointment we have to get you to 36 weeks at the earliest. It’s very strange that it was to the day my 36th week. We drove to the hospital, we live far from it – about a 45 minute drive. We went to the ER and they immediately sent us up to the maternity ward. They checked vitals and the doctor who saw me left the room after the 1st check and came back 10 min later saying “we spoke to your doctor…looks like we’re having a baby tonight”. Within 10 minutes Chad, my husband, was in scrubs. We had to wait a few hours until 5 in the morning…so we snuggled and slept until then. I called my mom, and she flew in right away. We went into the operating room, they administered anesthesia, then Chad came in and they started cutting me open for the c-section…when I said “OW”. They cut through the uterus wall and I could feel it. They shouted “everybody stop”!!! That’s the last thing I remember. They brought me emergency anesthesia and I was totally knocked out. I woke up in the recovery room, in the dark. I had a full blown panic attack – where is my baby, where is my husband…I’m totally alone. Chad was in the NICU, with our baby boy. Boys have a much higher rate at 36 weeks to go into NICU, where he ended up spending a week. I got sent up to the high risk maternal unit. The hope with preeclampsia is that it goes away with delivery, that’s the way to get rid of it. My blood pressure however would not go down, and it was really, really high. I had to be monitored, on the cuff and on all of the special monitoring units. A few hours later it shot up even higher. They had to give me an IV of magnesium, which is supposedly the only way to get it down if it doesn’t go down on it’s own. It’s to prevent seizures, the biggest fear with preeclampsia. I couldn’t leave my bed, this is the worst part of it. I still had not seen my son. I saw pictures of him on the phone from Chad. I was so emotional – I can’t see or touch my own child at this point. He’s in the NICU, I’m worried about him. I can’t see him until my numbers regulate. Forty-eight hours later, I had my “Meryl Streep” moment as my husband calls it. I yelled “If you want my blood pressure to go down, I need to see my baby”! I called my doctor, got into a wheelchair hooked up to IV, and got to the NICU. Meanwhile l’m learning how to pump, trying to get any colostrum to him and waiting for my milk to come in. Finally I saw my son Zion and it was obviously the best moment of my life, it seemed to make everything better. I was sent home a few days later when my numbers were close to normal. Having to leave him in NICU was hard but he was in great hands. Unfortunately, that same night I felt that same feeling as the night I went into the ER. I called my sister, a doctor in NYC, and she freaked out (she does not get worked up over anything). She called my mom and she immediately took me to the ER. This was actually more scary for me than the first time. At this point I have a baby – this time i have a baby who needs me – I can’t die. I’m on the stretcher, and my numbers are so high that they had to call the resident down from the high risk unit to watch me and not leave my side for fear of seizure. This is now called posteclampsia, There is very little research on preeclampsia, so you can imagine how little research there is on posteclampsia. It’s so rare and unheard of. A lot of people don’t know what to do about it. I was hoping to avoid the magnesium again, which by the way I forgot to tell you is like getting the worst flu of your life. Imagine a c-section, not seeing your baby and having the worst flu in your life. You can’t keep your eyes open for more than a few minutes at a time, and that was when I was pumping. Anyway, I couldn’t avoid the magnesium. I started tasting metal in my mouth. A nurse was standing over me with a paddle, five doctors around me . A crew followed me because of the fear of seizures. I had no appetite, I was just so sick. I got through that, my numbers got better, and Zion and I got to go home a week later. Unfortunately, that was not the end of the nightmare. I was really sick for more than 6 weeks. We were trying to regulate my medication. My doctor had connected me with a group of doctors at Cedars-Sinai called the Barbara Streisand Women’s Heart Center, where they have a research group focused on women’s high risk maternal health issues. I joined the registry and became supervised by these amazing doctors who were getting as much out of me as a patient that I was out of the doctors. They are trying to raise awareness about the high risk of heart disease in women who have high risk pregnancies. That is why I ultimately did the NPR interview. So, throughout those weeks, I worked closely with my doctors to find the right medicine and dosage. That meant being very sick and not being able to even change a diaper until 6 weeks in. That was so incredibly difficult. My mom and my husband are my heros, they never left my side. They fed me, set my pump up and took care of Zion during the day. I had a postpartum doula at night as I couldn’t really get out of bed. From 9pm to 6am the doula would get up with him, change him, bring him to me and put him back down. I needed that extra help for 6 plus weeks. Needless to say, this was not how I had dreamt of my birth experience. SSP: How do you personally care for your heart’s health since the birth of your son, Zion? I am on routine medication, I go for checkups with my women’s care doctors. I try to keep on top of monitoring my blood pressure but again I can usually feel when it’s not right. I live a healthy lifestyle as much as i can. Eating right and exercising. SSP: Do you have any words of wisdom you’d like to share with expecting moms who have had complications in pregnancy and are concerned about their blood pressure? I definitely can’t stress enough that every mom who has a high risk pregnancy should go to a cardiologist after having the baby. We’re so focused on the new baby, it’s hard to focus on ourselves but we need to. This is for long term care of you and your heart. Preeclampsia, diabetes, any issue. Also, if you know you are at risk for any of these issues, find the right high risk doctor as soon as you can. Mine was my guide through all of this. Make sure you have a supportive team getting you through whatever you need to get through. For a link to Lara’s recent NPR interview, go to: http://www.npr.org/sections/health-shots/2017/07/10/535644276/women-with-high-risk-p by Jen Valu
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 On February 1st South Slope Pediatrics shared our cultures and promises with all of our patients and families, including our core value #7, being humble. We’ve had such positive responses to this, one of the most meaningful coming from SSP parents Justin and Kelly Brandon and Roy Blumenfeld and his wife, Lauren Links, who shared an incredible project they had just launched THAT week. Their project, Solidaritees, ties in to SSP’s promise to always treating others how we would want to be treated. Solidaritees is a non-profit t-shirt venture they started to show solidarity with the Muslim Americans and refugees after the current administration signed their executive order on the refugee ban. These brave families decided to take their sadness and frustration and turn that energy into creating a t-shirt and movement with the most positive, inclusive message….hoping to create a dialogue and helping dissolve the fear of the unfamiliar. Let’s learn more about this venture and how we can help support and get the word out about this amazing cause, started right here in the Slope. SSP: Before we dive into this awesome project you have just launched, can you please tell us more about yourself and the other SSP families who are behind this project? This project was a joint venture of Roy Blumenfeld and Lauren Links (parents of Gabriel Blumenfeld, 22 mo old) and Justin and Kelly Brandon (parents of Ceci Brandon, 19 mo old). Lauren and Roy are both independent high school teachers (Lauren at Berkeley Carroll and Roy at the Ethical Culture Fieldston School). Kelly is a teacher at the Avenues school, and Justin runs a digital marketing company. Our families have been friends for a number of years now and the bond has grown closer since we have kids so close in age. SSP: How did you connect and make this happen? What inspired you to do this? Kelly and Justin organized a postcard making party the day after Trump signed his executive order on the refugee ban so folks could write to their members of congress. I was feeling exceptionally sad and frustrated that day. The immigration order, whether intentionally or not, was signed on Holocaust Memorial Day. I’m the child of four Holocaust survivors, so this day has always been challenging for me. I’m all too aware that refugee policy can be a matter of life or death. Sitting around the morning after, I had the idea of wearing a shirt with Arabic on it as a show of solidarity. Justin said he would do the same, and an idea was born. The seed is the shared belief that there’s nothing more important than standing up for those most vulnerable in our society. SSP: Solidaritees is such a smart name for this venture. Can you please explain the phrase on the front, why you chose it and also the decision behind not including a translation? The shirt says “ahlan wasahlan,” which simply means “Welcome,” and comes from a beautiful Arab tradition of welcoming strangers as family. We chose not to include a translation in order to encourage conversation. We hope people will wear the shirts in public and wear them often to encourage conversation with neighbors, colleagues, and strangers. We considered a number of possibilities for the shirt including American phrases like “this land is your land” written out in Arabic, but ultimately chose something that was both already familiar to the Arab community (and invariably elicits a smile from those who can read it) as well as something not overtly political. The shirt just says welcome — who could object to that? Only someone in the grips of xenophobia, which is what we hope to dissolve. SSP: I see on your website that you can opt to “buy one forward”. I love this idea, can you tell us more about this and why it is important to your cause? This was Justin’s excellent idea. “Buying one forward” means you are paying the price of a shirt so that someone else can receive a shirt for free. This has allowed to give out shirts at rallies, such as the Yemeni bodega owners rally at Cadman Plaza. We’ve also given out shirts at Arab-owned businesses and to people who want to support the cause but cannot afford a shirt. SSP: I understand that this is a non-profit project. Where are the proceeds going? The first $1000 we raised is being donated to the Arab American Association of New York. All proceeds beyond that (we’ve raised close to $4000 so far) are being donated in equal parts to AANY, the IRC (International Refugee Council) and Immigrant Justice Corps, an organization that provides legal assistance for immigrants. SSP: How has the response been so far? In addition to purchasing the shirts, how do we help get the word out and support this cause? The response has been phenomenal. We’ve sold over 800 shirts across the country. You can see a map of where people have purchased shirts on our facebook page: https://www.facebook.com/bksolidaritees . The next step of our project, now that many people have received their shirts and have been wearing them for a few weeks, is for people to start sharing their stories. Our hope is to create a Humans of NY-style account of people’s stories wearing these shirts across the country. We hope the conversation will spark into one that allows for understanding and acceptance. I firmly believe that people’s xenophobia is rooted in unfamiliarity; it’s easy to project when the issue is abstract. But when you’re talking about real people and real conversations, difference often melt away and people’s common humanity emerges. That’s the hope, at least. The best way to support the project is to tell friends and family about it across the country. Tell them to visit our facebook page and take a picture of themselves wearing our shirt! There’s already quite the gallery in the making at www.soldiaritees.org/photos — we recently had someone take a picture in front of the White House! https://www.solidaritees.org/ Posted By Jan Valu   According to the CDC’s Autism and Developmental Disabilities Monitoring, approximately 1 in 68 children have autism spectrum disorder and around 1 in 6 children in the US have a developmental disability. It’s critical for these children to have a strong support system in place, and that the child’s parents and caregivers be equipped with the proper tools as to how to best interact and communicate with their child. Here is where Rachel Cortese, one of the awesome South Slope Pediatrics moms, comes into play.
Rachel is a renowned Speech Language Pathologist based out of Brooklyn with over 12 years of experience. This February she is introducing a parent-based intervention program for parents of children with Autism Spectrum and Social Communication Disorders at Brooklyn College, which will help provide parents with the tools they need. Let’s get to know her and learn about her invaluable program in this month’s interview! SSP: Before we dive into this program you are launching, can you please tell us a bit about yourself and what it is that you specialize in? Sure! I live in Brooklyn with my husband and two sons. I am a pediatric speech language pathologist and behavioral therapist. I work with families in Brooklyn, Manhattan and East Hampton, NY. My expertise is in the evaluation and treatment of toddlers with delayed language development, children with stuttering disorders and speech sound disorders, and communication impairments associated with autism. In terms of my training, I completed a Masters in Communication Disorders from the University of Wisconsin-Madison and obtained a Masters degree in elementary education from St. Joseph’s University. I am currently working toward board certification as a Behavior Analyst and have completed advanced trainings in PROMPT, a specialized technique used to facilitate oral motor skills and to remediate speech production disorders, The Lidcombe program, an early intervention behavior based treatment program designed for preschool children who stutter, and the Autism Diagnostic Observation Schedule (ADOS-2), a standardized observation designed to assess behaviors related to autism spectrum disorders. Prior to studying Speech and Language Therapy, I taught Middle School Mathematics for two years in Philadelphia as a Teach for America corps member. I am passionate about the outdoors and taught adaptive skiing to people with disabilities at The Breckenridge Outdoor Education Center in Colorado, and worked as a field guide at wilderness therapy programs helping teenagers who struggled with a variety of behavioral and emotional issues. SSP: What is it about being a speech language pathologist that you are the most passionate about, and why did you choose to focus on this field and specialty? Any parent can attest to the magic of watching their child learn new things and acquire new skills during their first few years of life. Speech and language is one of the first windows we have into the brain and the learning process. I’ve always been fascinated by this process and now as a mom of two young boys, “on the job training” has a whole new meaning! Even though I have chosen to focus on the study of speech and language development, language doesn’t exist in a vacuum and is influenced by so many other things (a child’s attention, learning, temperament and environment to name a few). I work alongside and am always learning from brilliant colleagues who specialize in different aspects of child development and I get to wear so many different hats as I work to facilitate speech, language and behavior changes in a naturalistic and well-coordinated manner. I am most passionate about the intersection between language development and behavior. Effective communication skills are central to a child’s overall wellbeing and when children don’t have a way to express themselves effectively or efficiently, frustration can set the stage for maladaptive behaviors. Although I see children of all ages (birth to seventeen), I find the early developmental period most interesting and ripe for change. I specialize in helping parents learn strategies to successfully shape their child’s communication and behavior skills. SSP: What are some of the more common speech issues you encounter with kids on the spectrum and other social communication disorders? Since no two children with a diagnosis of ASD or social communication disorders are alike, this a difficult question to answer. Some children have significant difficulties with speech production and expressive language and other children with ASD demonstrate advanced speech and language skills. However, although this will look different for every child, one thing that these children tend to have in common is some level of difficulty initiating interactions with others, staying in an interaction with others and difficulty with other aspects of social communication like turn taking or playing appropriately with others. SSP: Let’s talk about the program you are launching February 9th, “More Than Words – the Hanen Program for Parents of Children with Autism Spectrum Disorder”. What is this program and who is it for? More Than Words® — The Hanen Program for Parents of Children with Autism Spectrum Disorder®, is an evidence-based, twelve-week, program for parents and caregivers of young children (ages birth to six) with Autism Spectrum Disorder (ASD) or Social Communication Disorders. In a small group setting, parents and caregivers will learn skills to enhance back-and-forth interactions with their children, help improve their children’s social skills and their understanding of language. The More Than Words® program consists of three individual family sessions and nine small group, parent/caregiver only, training sessions. By the end of the program, parents will know what to say and what to do to be their child’s most important communication teacher. The strategies will become a natural part of the way parents interact with their child. During the 8 group sessions families will learn step-by-step, how to:
SSP: It seems like this is not only an opportunity for parents and caregivers to learn how to make their interactions with these children the most meaningful they can be, but it’s also a chance for them to meet and connect with other families struggling with similar experiences. Do you find parents and caregivers often are lacking the support they need and perhaps feel a bit of isolation? Absolutely. Parents who have previously participated in this program report that one of the greatest benefits of the More Than Words Program is the opportunity it provides to connect with other parents. Parents and caregivers will meet other families in the same situations and will have an opportunity to share experiences, learn from each other and hopefully make new friends with other families who understand their unique challenges. SSP: In your opinion, what is the biggest benefit for those that take part in this 12 week program? Besides the connection with other families, the More Than Words program was developed by expert speech-language pathologists and is grounded in extensive research. The strategies parents will learn can be used naturally, throughout every interaction with their child. Since parents spend the most time with their child, this type of intervention can be way more effective than taking your child to speech therapy once, twice or three times per week. Actually research has shown that trained parents are more effective facilitators of communication development than weekly visits to a professional. SSP: Is there a website one can go to for more information on this program? For those who cannot attend, what do you suggest they do? Yes! For families who want to learn more about the upcoming program at Brooklyn College, they can check out the program details on my website: http://rachelcortese.com/parent-training/parents-of-children-with-autism-spectrum-disorder/. Families are also encouraged to contact me directly by email or by phone for more information and for registration information. My contact information is on my website and below. For families who can’t attend, I’d encourage them to visit my website to learn more about the individual services I offer or to set up an individual consultation. The Hanen Centre’s website also has a ton of amazing articles and accessible information for families. The Hanen Centre was founded in 1975 and is a Canadian not-for-profit charitable organization whose mission is to provide parents, caregivers, early childhood educators and Speech-language Pathologists/ Therapists with the knowledge and training they need to help young children develop the best possible language, social and literacy skills. SSP: Do you have any words of encouragement for those families who have a child with autism or another social communication disorder? Many parents worry about what will become of their children, and when you have a child who has unique and special needs, it’s only natural to wonder about this. While none of us can predict exactly what the future holds, the good news is that the brain is plastic and has the ability to change structurally. This means that children continue to learn throughout the lifespan and research has shown that intensive, early intervention has can “re-wire” the brain. When parents learn strategies and learn to implement them consistently and effectively, they can successfully shape their child’s communication skills, positively affect parent-child interactions, and facilitate behavior changes. Place: All sessions will be held at The Diana Rogovin Davidow Speech, Language, Hearing Center, 4400 Boylan Hall, Brooklyn College, 2900 Bedford Avenue, Brooklyn, NY 11210 Cost: $150 per family for the entire 12 week program For registration and more information please contact: Rachel Cortese, MS Ed, MS CCC-SLP Email: [email protected] Phone: (347) 471-0596 Interview with Matteo Trisolini, a “Superdad”, a Culture Revolutionary and Co-Founder of SSP!12/29/2016   We all know Matteo as the “papa” at South Slope Pediatrics, taking care of everyone on the SSP team. Matteo is involved in all aspects of the practice – if you’re lucky he will greet you when you call and you’ll hear his charming Italian accent! He has helped South Slope Pediatrics become fully integrated into the South Slope community, while at the same time building community within the practice itself. Matteo has developed classes to help support our families, from breast feeding to CPR to children’s nutrition and more. He has become a pioneer of charitable causes, supporting both local and national charities, even launching the Love in a Safety Pin Campaign, supporting tolerance, love and kindness. He’s the Culture Director at SSP, committed to establishing and embracing core values we hold dear. Just when you think he does it all – did you know he’s also a super talented photographer and artist? He’s also a social media guru! What does Matteo NOT do? Let’s get to know the man behind the practice in this month’s interview!!!
Can you tell us a little bit about your childhood, growing up on the coast of Italy and how your journey brought you to NYC? I was born in Bari, Italy. Bari is a small city on the coast of Puglia. I was basically born and raised on the beach, so that is the culture I have. Culture of family first. Everyone there has lunch, dinner, every single meal at the table together as a family. In my family I’m the only crazy one who at one point decided I couldn’t see myself living there. So, I decided to pursue other options. Initially in 1996 my mom and dad celebrated their 25th anniversary and they took us on a vacation to the US to celebrate. When we landed in NY I could not forget the moment I put my feet on the ground and said “Wow, this is real. This is not the movies. This is real”! As soon as I did that I realized that I felt like I was home, a completely real and unexpected feeling at 22 years old. It was incredible and weird. So, with that – that trip opened up my eyes to new possibilities. At that time I was studying marketing and management in Italy. I decided to do whatever I could to live in the US as the US would be able to offer me more opportunities than I could get in Italy. I also wanted to transition from marketing and management to photography. I fell in love with being creative as a small child. I looked into the Fashion Institute of Technology – but at that time the cost of school was impossible. $21k plus boarding and everything else. I didn’t have any of that. Our family had spent everything on our trip to the US so there was no way to do it. I had to look into a different way to make it happen. I found the University in Milan that only cost $5k a year, which I could afford, and it had an exchange program with the School of Visual Arts. The exchange program was on a scholarship basis, and only one student could be awarded that scholarship each year. By the end of 2nd year I won the scholarship and spent six months at the School of Visual Arts. I went there for the beginning of my 3rd year, spending 6 months, and never wanting to come back. I had no money….I had just enough money for my bagel and cream cheese in the morning and Wendy’s for my lunch. That was all I could afford. My family is not wealthy, but they did an amazing job with my brother and myself. Taught us that you have to go get it and make it happen! Soon, my photography would start to help pay my rent. From there I had to graduate in Milan. While on scholarship in NYC I found a sponsor that would help me come back and work as a photographer. That was back when there were no wrinkles on my face! Not many people know that you are also a talented artist, and a very successful fashion photographer, eventually founding Matteo Trisolini Studios. Can you tell us more about this prior life of yours? I understand you even designed concepts for Grammy Award nominees! Basically after graduating I told my mom that I’m leaving Milan and going to the US. Of course she said “you’ll be back within 3 months”. 17 years ago I arrived in the US, the year before 9/11. I was able to thrive as a photographer working for Simon and Schuster doing covers for their books, magazines and commercial advertising. It was a different NY. A NY were there were no limits on budgets, there were cash advances…the creativity was incredible. People who knew what they were doing and had culture in visual communication were still working and there was an incredible energy. When I founded Matteo Trisolini Studios, I had a studio in Chelsea, on 25th between 10th and 11th. I miss that energy. Then…I met Dr. Cao. How did your life take the turn to healthcare, and starting the practice we have all come to love? How has becoming a parent affected this choice? I met Dr. Cao when he had just started working as an attending doctor at Methodist Hospital. He was done with residency. That is a big deal, as during residency you do not have time for a social life and cannot settle down. So he was done with that and had been working for a year and half as an attending doctor at Methodist. We actually met because we lived in the same building in Battery Park. We both had gotten into this building because of the grants after 9/11. We were both able to live in this beautiful landmark building. We were also coincidentally playing volleyball in a gay volleyball league. We didn’t know this until one time we saw each other in the building as we were on our way to volleyball. We didn’t know we lived in the same building. We didn’t know we played in the same league until that morning. That morning in this big grand hall with big arches – he looked at me and because of what i was wearing and my mohawk….he asked if I was going to play volleyball in the league. That was the beginning. From there, we were married and had Isabella. That’s when I transitioned. When I had her I realized I had to make a choice. I could still be a photographer in the fashion industry. In order to be successful in that industry you have to have a big ego. That also means not a lot of family time, and having to go to parties, travel here and there, working weekends and surrounded by a certain type of people. I made a decision to put on the brakes until Isabella was about 16 months. When I was ready to go back to work, I decided that I wanted to be behind the scenes instead of at the front. Still working in the photography industry but as a producer. With this in mind, I was putting my resume together when Hai said that he always wanted to open his own practice. He said “If I don’t do it now, I’ll never do it. Do you want to do this together”? I said OK! I had zero experience in healthcare but did have experience creating a business from the ground up, and running a business marketing wise. I knew what he wanted to be seen as – not a big doctor with a big fancy office and five thousand locations…but a small town doctor. That is what we first told everybody. You will always have a chance to see your doctor. It’s nice to see people and know their names and remember their names. The fact that they know that I’m married to him and this is our family business. It’s very unique. From the very beginning our motto was “Family First” and when people try to take us down, we said: let’s put our heads down, think about what we want to accomplish and what we want to give our patients. Let’s focus on all the good we can give to anyone we interact with, one patient at a time. This is still a rule that applies today. We have a lot more patients and attention that we used to have – but the message is still here. Think about what good things you are accomplishing every day with our patients, and always giving them the greatest experience of their day. That’s our goal. Always go above and beyond to help and give them the most pleasant experience of their day. Having Isabella helped me understand being successful in the arts wasn’t so important to me, because that was all about me. When you have a child you exist but it’s not all about you anymore. This venture was more about making it about me AND my family. Having a family and staying in the fashion/commercial photography industry didn’t work together for me. Family comes first, then everything else. I learned that when having Isabella. We all love South Slope Pediatrics for many reasons. It has that old-school “small town” doctor feel. Parents develop real and trusting relationships with the doctors. How do you maintain this close-knit environment in a fast paced city like Brooklyn? We invest so much time and energy on this. This is why company culture, which is something we work on every day, is really important. We have to walk the walk. We are not interested in opening many locations nationwide. This is not who we are. We opened this office in 2012 because Dr. Cao wanted to focus on building relationships. Still to this day building relationships is the most important thing. Relationships are not only between the doctor and patient. It’s between anyone on this team and anyone else. It is between two SSP members. Between any SSP member and a patient – whether face to face, on the phone, on email or on social media. With any encounter we focus on that relationship. We promise that we are here to listen and we promise to always be kind to you. We promise that we will always be helpful and we will always strive to go above and beyond what is expected and required. Patients know that when they call they don’t need to scream at anyone. They know they can count on us listening to them and helping them. That is very important. The trick is that we ask each individual on any media to reciprocate that behavior. To be kind, to be helpful, to listen and be humble so we can establish that relationship with them. When you have a baby you go to the pediatrician in the 1st few years a lot. When you come here, you should feel like we are your extended family and you are home. We are here to help you. The close relationship with the practice is not only experienced at doctor appointments. You offer ongoing support for the parents, offering free courses in the office and sharing helpful and engaging articles and posts on social media. Why do you think this is so important? When I had isabella in 2010 I was a first time parent. Dr. Cao went back to work right away. I was home with Isabella, and as you might know – that can be both the most fantastic and also the most isolating thing that can happen to you, especially true if you don’t have family around and your close friends are working. It was wintertime, and it was a hard winter. I didn’t go out, and I didn’t have a network. I’m hoping today it’s different but at that time there weren’t any daddy groups, only mommy groups. It’s very hard to make connections and do something social. By the time my husband was home at night, I wanted him to take the baby. “Let me sleep”! I would say. Social interaction was so difficult to find. When we opened the office we thought it would be great to help bring our families together. Maybe we can help them go get a coffee together, start new friendships. Two main goals of the classes we offer are to provide tools to new parents that they wouldn’t necessarily acquire during the doctor visit (CPR for example), and the 2nd goal is to get people together with the same age children and understand they are not alone, and what they are experiencing is normal. You can go crazy when your 2 month old is screaming at you. Then you see that mom or that dad is going through the same thing! We offer the skill and let them get to know each other, building community in a small but important way. As for social media, that is today’s hangout. It’s the new park or where you go with your stroller. It’s where we meet together. You want to provide a service to your patients in any way you can. It’s a new way to reach out. It’s not a place to answer medical questions, but we can offer tools, advice or stories where we can all connect. Another reason we love SSP is how the practice goes BEYOND just being a doctor’s office. You are fully committed to the South Slope community, from ongoing fundraising for Jonah’s Just Begun to supporting our local schools. Can you please tell us more about what SSP does here in the Slope? First of all, we would like to do more than what we do. With a small office, it’s not always easy to coordinate and to deliver. Its most important that you pick what you do well and do that thing well. We want to do it the right way. There are some organizations that we work with, like Jonah’s Just Begun, which is close to our hearts. Jonah has been a patient of Dr. Cao’s since he was just one year old. Dr. Cao helped in diagnosing him, and we want to always continue to support him in any way we can. The schools are important as that helps our children have more tools in their hands. There are other projects that I’d like to tackle and local organizations that help kids who aren’t as lucky as our kids. I hope that we are able to get involved with more projects soon. We are here to create community, it all goes back to the fact that we are part of the community and want to help it grow. Your email signature says “Father and Culture Revolutionary“. Can you please explain what “culture revolutionary” means to you? Everyone here on the SSP team has in their email signature who they are (mother or father for example). Most of us are parents. We always say who we are first. Then, the second part is what we are passionate about. For me, it’s being a culture revolutionary. I’m interested in culture. I am a revolutionary because I understand there is a need to express who you are and what you believe in as an individual and as a company. Company culture is a relatively new concept. Let me give you an example. At SSP we come together as a team and share core values. We have a set of 10 values that we share, being humble being one of them. It’s something we all believe in and can relate to. We follow this every day, being on the phone scheduling appointments or helping someone who wants to transfer with an insurance we are not contracted with. We help them find a new doctor within their insurance. I’ve always been interested in investing in the people that make SSP. Everyone who works here understands that no one works FOR someone, but that we all work WITH someone. It’s important that our team members are happy. You can’t deliver a great experience if your team members are not having a great experience. It’s something everyone here understands and appreciates. It’s how we are able to go above and beyond in our day to day. I pushed myself to save money and attend the @Zappos culture camp last year. When I sat in that room for those 3 days I felt at home. They spoke my language. They helped give me the tools for what I needed to accomplish. I’ve been incorporating what I’ve learned here. We have a culture team at SSP that makes sure our culture is clear to everyone who works here, our patients who come here, and anyone who is interested in joining our family. I think the great love and compassion you show the South Slope Pediatrics families starts with the love you have at home with Dr. Cao and your beautiful daughter. Any words of advice to all of us, trying to be as hopeful and positive as we can when looking at the new year? We know that we might be looking at difficult times ahead but we also need to focus on the good that we do every day, one person at a time. That’s how you continue, not listening to the noise around you. Focus on the good that you do, one person at a time, every day – then you don’t lose the focus Posted by Jen Valu  We are so very honored to interview Ida Pearle this month, a mother and patient of Dr. Cao’s, as well as a highly accomplished and renowned artist, writer (and violinist)! Her artwork is both comforting and inspiring, beautifully depicting movement and capturing the innocence and magic of childhood. Her first book, A Child’s Day: An Alphabet of Play was chosen as a best children’s book of 2008 by Bank Street College, and her newest title just released last year, The Moon is Going to Addy’s House, is an American Library Association Notable book and has received exceptional reviews. Make sure to keep your eyes open at your next visit…her incredible artwork is about to grace the walls of South Slope Pediatric’s lobby! SSP: Can you please tell us a bit about your background growing up in NYC and how the culture helped shape you as an artist and as an author? I recently published a book about my childhood in New York called “The Moon is Going to Addy’s House”. It’s about a car ride from city to country that I took every weekend as a child. I spent 5 years creating it, which was a wonderful opportunity to meditate and reflect on my New York city childhood and it’s richness. I feel very attached and connected to my childhood places, be they neighborhoods or homes. I grew up in New York- late 70s/80s it was a very different place; my experience was a much more bohemian one than is possible today I think. My father was a sound engineer, and had a recording studio in our loft, and my mother was a painter. I was surrounded by people creating constantly and my identity as an “artist” already strongly formed in childhood. My parents protected my free time and made sure I always had paper and pencil. I spent a lot of time as a child at the city’s art museums, The Met and The MoMA, and had access to tons of visual material, like my own large collection of children’s books and my mother’s art monographs. My parents were incredibly encouraging and really made art the center of my universe. In this way my focus today is very much a continuation of what it was in childhood, and my work is very much the blossoming of seeds planted in my childhood. The other lucky thing that plants my work geographically in New York was my going to the United Nations International School as a child. New York is already an incredibly diverse place, but UNIS was even more of a microcosm- every student hailed from a different country and that experience more than anything has informed my aesthetic. I aim to create inclusive imagery and a diverse representation of children. My commitment to celebrating the beauty of diversity is rooted in my experience as a child in playing with children who were different from me. Celebrating our common humanity is something I like to think we are especially good at doing as New Yorkers. SSP: Who were your favorite illustrators and authors as a child, and how did they influence you? Growing up I loved Robert McClosky, Ezra Jack Keats, Nancy Ekholm Burkert, Ludwig Bemelmans, Leo Lionni and Maurice Sendek of course. I think a few on this list were incredible draftsman- like Robert McClosky and Nancy Ekholm Burkert, who also made work outside of the tradition of children’s literature. I think perhaps Ezra Jack Keats and Leo Lionni have influenced my work more directly in terms of simplifying forms in my own work (as well my our medium – cut paper) I think children are attracted to that simplification, and I have always been attracted to minimalism. It takes a lot more mastery of form to pare things down to their most essential. SSP: As a creator of fine art for children, what mediums do you use? How would you describe your work? My work is originally created in cut paper collage. I use a lot of drawing to produce the imagery- but then it all has to be cut out with an exacto knife and glued together. I suppose I would describe my work as being about gesture, movement, and pattern. I’m very interested in the human form, how it moves through space, and the challenges of depicting that on a flat plane. It’s very interesting to have to create something from nothing and to have it convince the eye of something very specific, like weight, volume and/or velocity. I think there is a magic in art- the marriage of technique and imagination which transports you to a place beyond the page. Thematically, I aim to capture the happy and care free nature of childhood, and to create images where all children see themselves represented. SSP: I understand you do unique customized pieces of artwork in addition to fine art prints – can you please tell us more about that? I love to create collages for children and families’s homes. Mostly these pieces are bespoke and one of a kind. I’ve been doing this for nearly 20 years and I’ve gotten to hear how these pieces have become special family keepsakes that are treasured for a long time- which makes me very happy! It’s a very special process getting to know and depict a family through creating an art work for them! I treasure these experiences. SSP: Your most recent book, The Moon is Going to Addy’s House, has received such incredible high praise. To quote Martin Scorcese, “The Moon is Going to Addy’s House is visual storytelling at its very best. The emotional journey of the children is beautifully expressed through Ida Pearle’s stunning use of collage, color, texture, and movement”. How do you think you are able to connect so strongly to the reader? Well, first of thank you. I’m very honored by these words, to say the least. I had the great honor of teaching Scorsese’s daughter private art lessons for 6 years, which is how he and his family came to know my book. I think the subject matter is highly relatable – how the moon follows us at night is a universal experience, and I think the visual part – the illustrations probably have as much if not more to do with how people consume this book in particular. I think children’s books are just as much about the pictures as they are about the story. We are visual thinkers first and foremost, we read in pictures before we read in words. Almost like hieroglyphs, they pick up on shapes and symbols first. There is a pictorial language that children react to and apply to their understanding of what is outside the page. I tried with Addy’s House to create a world children could really beam themselves into and see their own experience reflected. It’s an early and important phenomenological experience which is why we see it so much in children’s literature. SSP: There is a very special relationship between a child and the moon, I see it in my own personal experience daily with my 4 year old daughter who almost treats it as a friend or family member of hers. “Look, mama – the moon followed us”! as we drive home at night. You capture that innocence and joy so well. Does this mirror personal experiences of yours as a child?
Creating ‘The Moon Is Going to Addy’s House’ was deeply meaningful for me. It is based on a phrase I used to repeat as a child on car ride from city to county to a cottage that has been in my family since the 1940s. My father and uncle, city kids used to play there in the summer, as did myself and my sister. My family over the years agreed that this phrase, (or idea) would make a beautiful children’s story. Children’s literature was very important in my family life as a child.. My father became ill about 8 years ago, and told me he really wanted me to focus on bringing this book into being. So, I did. He passed away 6 years ago and the last conversation we had was about the book; he looked at my sketches and encouraged me – he was an incredible cheerleader for my work. It was my opportunity to meditate on my childhood, his loss and to try to transform pain into beauty, which I think is the tool that art is. It’s a healing act, creating or engaging with art of any kind. SSP: How has having a daughter of your own affected your work? After depicting childhood, and motherhood for so long it’s opened up another dimension of my practice to me. I understand a mother’s love for the first time, which is different from only understanding a child’s love. I haven’t had the chance yet to make much new work, but when I do- I know I will have a deeper connection and understanding of children, and of parental love. To learn more about Ida Pearle and her work, go to: http://www.idapearle.com Posted by Jen Valu   Interview with Dr. Danis Copenhaver
For those of you who have not heard the exciting news…South Slope Pediatrics has now added a fantastic new full time pediatrician to the growing team! Let’s get to know Dr. Danis Copenhaver, a new mother herself! SSP: Welcome to South Slope Pediatrics! Where did you practice prior to joining SSP and what brought you here? Thank you! I am so happy to be a part of the South Slope Pediatrics Family. For the past two years I have been practicing pediatrics in Brooklyn. After living and working here, and starting a family of my own, I knew I wanted to put down strong roots and South Slope Pediatrics was the practice to do that. Dr. Cao is an institution in Brooklyn–he is a skilled pediatrician with years of experience dedicated to family and community health; Dr. Wilson-Taylor actually taught me pediatrics at Weill Cornell in medical school, and I have always admired her intelligence and approach to medicine. And then I met Matteo and the rest of the team! I have never met a more competent and friendly group of people committed to going the extra mile for their patients. I knew that joining the practice and working alongside these amazing people would be the right fit for me. SSP: Please tell us a little about yourself. Where you are from? Do you have a family of your own? I am a Southern woman, who has found a home in Brooklyn. I was born and raised in a small town in South Texas, and moved to Conway, Arkansas when I was ten. I attended the University of Arkansas where I majored in Biochemistry, rowed crew, and met my future husband, Drew. After graduation, we spent a year living in Belize partnering the University of Arkansas with the nonprofit organization Peacework to create a service-learning study abroad opportunity for students at the University. After Belize, I moved to New York City to start my medical training at Weill Cornell Medical College, and completed my residency at the Children’s Hospital of New York – Columbia University. Drew and I were married in 2011 and we just welcomed our son, Elo, in 2016. SSP: It must be invaluable to relate on a personal level to new moms and dads. Do you have any advice for new parents that you wish someone had shared with you? So many of my patients would comment during my pregnancy about how being a pediatrician would affect being a new parent, but it was another pediatrician/father who told me, “Being a pediatrician won’t make you a better parent, but being a parent will make you a better pediatrician.” And I have totally found that to be true. I have such a deeper understanding and empathy for the struggles of new parents–this is really hard work! While I still consider myself to be a novice parent, my advice-though not novel-would be, take a deep breath, trust your instincts, and everything will be better after a nap. SSP: Do you enjoy any special hobbies or activities during your “down time” (if there is a such thing with a newborn)?! Any special interests? You are right about lack of “down time,” but thank goodness for a Kindle for middle of the night feeds! I love to read and have been able to do quite a bit of it during my maternity leave and now commute to and from work. I also love listening to podcasts. Any interesting information outside of medicine and parenting these days comes straight from a podcast. Drew and I love traveling, cooking, and bike riding. I also enjoy camping and hiking and hope to take Elo on his first campout in the Spring. SSP: What led you to decide that you wanted to study pediatric medicine? Since I was four-years-old I have been drawing pictures of myself with a stethoscope, and that desire to be a doctor stayed with me throughout my education. I have also always taken care of children in some capacity. I watched my younger sister and cousins growing up, started babysitting in my neighborhood at 11 after getting Red Cross Certified, nannied in high school and college, and was the president of Camp Phoenix, a camp for pediatric burn survivors, in medical school. Kids bring me such joy! But I knew I wanted to practice pediatric medicine when I met the doctors, nurses and patients during my pediatrics rotation at Weill Cornell Medical School. I fell in love with the idea of taking care of not only the patient but the whole family. I was engaged with pediatric disease processes, unique and distinct from adult medicine, and I was awed by the dedication and care of the people who practiced pediatric medicine. Within a week on that rotation, I knew I had found the field of medicine I was going to dedicate myself to. SSP: What do you find most fulfilling as a pediatrician? Can you please share any experiences you’ve had that has helped shape you as a person and as a doctor? I find the continuity of care the most fulfilling part of my job–getting to know a patient from birth and following them through adulthood is incredibly rewarding. This sense of dedicating myself to a family likely stems from growing up in a small town with a general practitioner who took care of my whole family. From the everyday colds, to treating me for burns after an accident I had when I was 7, he was a constant in the care I received in my childhood. He even threw a big Halloween party every year that the town went to! Even though we live in a big, bustling city, I hope to bring some of that small-town medicine to my practice and my patients. 3 Responses to “Interview with Dr. Danis Copenhaver” Leona Kadlacek Says: October 30th, 2016 at 8:43 pmWhat a wonderful interview. So very proud of you Danis. Love you. Leona Kadlacek Says: October 30th, 2016 at 8:45 pmSo very proud of you Danis. Peggy Brown Bean Says: October 31st, 2016 at 1:49 amDanis, I am very proud of you. I remember so well when you were seven and had the burns. As your great aunt, I remember lots of little things, and just wish I had been able to know you better as you grew older and made your decision to be a pediatrician. I am a very old aunt, but I still visit pediatrician’s offices on a regular basis because I still have four medically fragile little ones living with me all the time. Babies have been a major part of my life, and thanks to dedicated doctors like I’m sure you are, my babies get the best of care.  From the moment I met Dr. Wilson-Taylor I knew she was a perfect fit for the practice. So warm and personable, caring and kind. A smile that welcomes us and makes us feel confident that we are in the best of care. A presence that makes us feel safe and calm. Many of us have gotten to know her as the awesome doctor our child is lucky enough to see, but we ALL want to know more!!!! Let’s learn about her in this month’s interview.
SSP: Can you tell us a little about where you grew up and your path to becoming a pediatrician? I was born and raised in Canarsie, Brooklyn. I always knew I wanted to be a doctor since I was in elementary school. I did a few science programs in high school and only became more fascinated in the sciences and health professions. Even though I felt passionate about being a pediatrician, I kept my mind open throughout medical school. I always found myself playing with children of my adult patients, or taking care of the newborn after a delivery and knew that providing care for children was my true passion. SSP: Tell us a little about your family, I understand you are a mom of 2? I am a first-generation American born. My parents are from the West Indies. My son is 9 and my daughter is 7. They are the reason I switched from academic pediatrics at Cornell to private practice here at South Slope. I wanted to be closer to home so that I could spend more time with them during their formative years. I have been married for 12 years to my childhood sweetheart. SSP: As parents we are always striving for a somewhat unattainable word “balance”. How do you try to maintain balance as a doctor AND mom? This “balance” is very tricky for working families. A couple of years ago, I made a list of ALL the activities that I do, their importance and how much time I spend on each one. It made me re-prioritize different aspects of my life, which led me to join the SSP family. It allows me a chance to be a professional and still make time to get home each night and spend time with children, finish up homework and still take them to activities on the weekend. SSP: How has being a parent affected your perspective on being a pediatrician? I know many great pediatricians that don’t have children, but being parent does give me a chance to take a step back and put myself in the shoes of the families of my patients. I realize the way pediatricians talk with families and patients is just as important as the diagnosis being made. I try to take my time and make sure parents understand why I am prescribing a specific treatment and are able to make informed decisions to best take care of their child. SSP: When you aren’t busy being a mom and a pediatrician, what do you enjoy doing in your spare time? Spare time…I like to cook and am working on my gardening skills. I enjoy fitness and try to get to a cardiokick class once a week and do workout videos at home. SSP: What is the aspect of being a doctor that brings you the most happiness? Whether its an infant with a cold or more life-altering moments, to be a constant support and sounding board for a family brings great joy. As a pediatrician, in just a few minutes, I can tell whether a child is really ill and to be able to tell a parent that their child is “fine” can put them at ease.  Are you an avid tennis player and want to get your little one involved? Or do you have a child interested in tennis and you’re looking for a place to nurture their love of the sport? OR…not a tennis player, and wanting to introduce it to your family? Right around the corner in Gowanus you will find Court 16, the first (and only) kids tennis club in Brooklyn. This state of the art facility was created with kids in mind, from kid size courts with cushioned surfaces to bathroom sinks at kid-height. Tennis has so much to offer our children, like aerobic fitness, fine motor control, better eye-hand coordination, discipline and learning sportsmanship, among many other benefits. Finally we have a place dedicated to this great sport right here in Brooklyn! For this month’s interview we decided to talk to the founder of Court 16, Anthony Evrard.
SSP: I understand Court 16 is the first and only kids’ tennis club in Brooklyn. What does that mean – smaller tennis courts? What do you specifically offer for the kids? We offer perfectly kid-sized courts, which means permanent USTA-sanctioned 30’, 36’, and 60′ tennis courts – the optimal size for child athletes. This – along with the right instruction, racquet size and weight, and low-compression tennis balls – allows kids to grow at their own pace while building confidence and the right techique before moving onto the next format. From the courts to the locker rooms to the teaching methodology, our facility adapts to the kids, rather than the kids having to adapt to it. Based on their goals, kids can learn in private, semi-private, group, or camp sessions. Group sessions maintain a strict ratio of no more than 5 kids per 1 instructor, to ensure kids receive the attention they need, and are structured based on the child’s age and skill level. SSP: What is the mission of Court 16, in addition to teaching children how to play tennis? Our mission is to offer a unique and holistic tennis experience to kids of all physical abilities, and from all social and geographic backgrounds, in a safe environment curated specifically for them. Our holistic teaching methodology incorporates technique, strategy, and sportsmanship, connecting mind and body to develop confidence while building a solid technical foundation and love for the sport. SSP: Can you tell us a little about how and when Court 16 began and where the name comes from? Court 16 gets its name from court number 16 at founder Anthony Evrard’s tennis club in his hometown of Brussels, Belgium. Playing on the court since the age of 3, tennis inspired him to develop a “blueprint for life”, cultivating qualities of discipline, focus and fair play that have benefited all aspects of his life. Pulling from his decades of life in the world of tennis, Anthony’s desire was to create a modernized approach to the game, curated and remixed specifically for kids. Court 16’s flagship location in Gowanus held its soft opening in October 2014 before opening its entire 15,000 sq ft space to the public in August 2015. SSP: The photos I’ve seen of your facility are super impressive! Can you tell us a bit more about it and your courts? Court 16 has five permanent USTA-sanctioned 36’ tennis courts, a 30′ court for Little Freshmen (ages 2.5-3 years), and a 60′ court for advanced Juniors (ages 7-8 years), Seniors (ages 9-11 years) and adults. All courts are built using PREMIER COURT surfacing, the most advanced impact-absorbing cushioning surface out there – which is especially gentle on growing joints. Our bright and architecturally progressive interior is designed to excite young minds (and imaginations!), and a ton of other activations create a well-rounded experience – from ping pong tables sized perfectly for kids of all ages, to plasma screens showing iconic tennis matches. SSP: I think our families would be very interested in learning about the unique offerings like the monthly kids’ movie night and weekly adult tennis night. How do these events work? We believe in playing and growing as a family, which is why our memberships offer special savings for siblings, and complimentary membership for the parents. From themed kids events, to Friday Movie Nights for the kids and their families, to FOAM Tennis after-hours social events for the parents and friends, Court 16 is a community built for families. Plus, our new Adult Tennis Fitness and Adult Beginners Classes help our adult members raise their game to the next level! SSP: As you know we are a pediatrician’s office, with many young patients. At what age do children become involved in the sport and how does it work for the very little ones? Court 16’s classes are structured by age and skill set, and range from Little Freshmen (2.5 – 3 years) to Seniors (9 – 11 years). We excitedly introduce our youngest group of Little Freshmen to their first tennis racquet, engaging them to make contact with the ball for the first time. We’ll practice balance and movements through interactive drills, before moving onto exercises that build psychomotor and visual-motor skills. And of course, parents and caregivers are welcome to join their little ones on the court. SSP: Do you also host birthday parties, even corporate events? What’s this I hear about foam tennis? Birthday parties at Court 16 are designed to celebrate and engage kids, regardless of their level of tennis experience. Parties run for 90 minutes and include 45 minutes on the court – for tennis games and activities – and 45 minutes in the party space – for cake and candles! We host corporate events, team building activities, and leagues, incorporating Court 16’s FOAM Tennis for an engaging experience both on and off the court. Inspired by racquet sports played on small courts throughout the world, FOAM Tennis provides a high-paced, stress-free version of tennis that maximizes the number of rallies, while minimizing the impact on joints. It’s an awesome way for colleagues or clients to spend time together out of the office. SSP: How does one learn more about Court 16? Do you recommend a visit? The best way to experience Court 16’s community is to come check it out! To schedule a complimentary intro session and hang out with the team, visit our website, email us [email protected], or call us at (718) 875-5550. Posted by Jen Valu   As parents we are always looking to find books that are both entertaining and at the same time help teach valuable lessons. As a mother of two who grew up in an extremely homogenous (and often narrow-minded) small town, some of the most important lessons I believe we can teach our children is to think with an open mind, to embrace honesty, to not judge and to accept differences with an open heart. Every now and again we stumble upon a book that not only our child loves reading, but also helps reinforce these values we hold dear. Jacob’s New Dress, by Sarah and Ian Hoffman, is absolutely one of these books. It follows a little boy named Jacob who wants to wear a dress to school, and the struggle he faces in feeling so different from his peers.
SSP: Can you please tell us a little bit about your personal experiences that have helped shape your inspiration behind Jacob’s New Dress? When our son Sam was two, he wanted to play with the toys and wear the clothes generally thought to be for girls: pink sneakers, pink t-shirts, flowered hats, and the princess dress-up costumes at preschool. Eventual Sam asked, “Can I wear a dress for real? To school?” It was a confusing experience for us as parents as we tried to balance supporting our son’s intense desire to be himself with concerns about his safety. We joined a national support group for parents of gender-nonconforming kids, and found we were not alone. There were lots of parents like us, and none of us had resources to help our kids manage the complex social dynamics that come from being different. As writers (Ian as a children’s book author and illustrator; Sarah as a writer for grown-ups about kids and gender), it seemed natural to collaborate on a picture book about a boy who wants to wear a dress. It was our way to help other boys like Sam. Having a book where they can see themselves portrayed in a positive way is very powerful. And it gives parents and teachers a way into a conversation about acceptance of difference. SSP: For all of the parents out there with gender-fluid children, this must provide immeasurable support….reading about another child out there that is so similar to them! Can you tell me about the most meaningful feedback you’ve received? While it’s exciting to read good reviews in magazines and newspapers, the most meaningful feedback comes from individuals. Parents of gender-diverse kids (as well as gender-nonconforming or trans adults) from all over the world have written to us to share their stories—stories that are often heartbreaking as well as heartwarming. They send photos of smiling little boys wearing princess dresses and holding a copy of Jacob. Knowing we’re making a difference in a real child’s life makes us feel both immensely proud and deeply humbled. In a recent visit to a K-5 public school, a parent cried as she told us how the book had transformed her whole family’s approach to supporting their son, how they moved from shame and hiding into acceptance and even celebration of their son. By the time she was done we were all in tears. SSP: I personally appreciate how honest and realistic this book is. It is not easy being different, and reactions to being different can often be extremely hurtful. Why was it important for you to write in this way, specifically when you write about how Jacob “can’t breathe” when he’s in these circumstances? It tugs at a parent’s heart. Thank you. Life can be very difficult for kids who are different, in any way. Since our goal was to write the book in a way that portrayed a gender-nonconforming child in a positive light, we had to also be honest about what life is like for a child like that. While our son felt happy and free twirling in a sparkly dress while wearing a tiara, his experience with other people’s reactions (both kids and adults) was often deflating in a way that gave us that “can’t breathe” feeling. It’s a story we heard over and over again from other parents, and we felt that the experience needed to be reflected in the book. Jacob’s New Dress was a hard book to write. We knew the joys and sorrows of Jacob’s life so well from our own son’s experiences. The early drafts were too intense for a young audience; it took a while to move away from the reality of our son’s story and come up with Jacob’s story, which is fictional and more appropriate for a picture book. You can read the real-life story of Sam’s first day in a dress here http://www.sarahandianhoffman.com/cookie-sh-article.pdf. SSP: As a mother of 2, one being a 3 year old daughter…I see how innocently and beautifully they visualize the world. So accepting and open. No gender-bias. When she invites her boy friends over for a play date, she often asks if they want to play dress-up (which means a tutu in this house). She never questions or thinks why that would be different for a boy or girl. How do you suggest we help them maintain this way of thinking? Bias is learned. Parents teach it, teachers teach it, television and movies and gendered aisles in toy and clothing stores teach it. Even if at home you support your daughter’s open-hearted free thinking, as she gets older it will become harder and harder to counter all of the gender-divided messages she’ll receive from the world. However…. We’ve learned that kids are pretty tolerant of difference if they’re taught to be tolerant. Education makes a huge difference in terms of what kids will or won’t accept. We saw it clearly in Sam’s school—when kids were taught simple lessons about letting everyone be who they are (Colors are for everyone! Boys can have long hair! Girls can have short hair! Like what you like, and let others like what they like!), they accepted Sam. When they weren’t explicitly taught, they rejected him. Education is powerful. It works. In unsupportive environments, kids like Sam are teased, ostracized, and brutalized. We want to try to prevent these behaviors before they start by building a culture that tolerates, values, and celebrates difference. Our book is a small piece of a much larger effort to build a more empathetic, compassionate culture. SSP: Is there anything you’d like to share specifically with those parents and families of transgender children? First, find support—for both yourselves and your children. Join a support group of like-minded parents (or form one if you can’t find one); bring your child to a group for gender-nonconforming or trans kids. Enlist thoughtful, supportive family and friends to buoy and celebrate your child and your efforts to make their world safe. Read books about parenting gender-creative children, and fill your child’s library with books that reflect gender diversity (our website has a list of books for adults and kids of all ages—http://www.sarahandianhoffman.com/resources/recommended-reading/). Ask your school to be proactive about anti-bullying programs in general and gender education in particular (and if asking doesn’t work, demand it). Find organizations that support families and schools (our website has a list). The National Association of Independent Schools has a document, Guidelines for Independent Schools Working With and Supporting Transgender and Gender Nonconforming Students, which provides invaluable support for building acceptance in schools. Educate everyone you can. Gender diversity is a new concept for most people; ignorance and prejudice are deeply ingrained. Even people who love your children—like grandparents—often need time to adjust. See each interaction as an opportunity to educate someone about the many forms of gender identity and expression. Remember that your responsibility is to your child, not to manage the discomfort of adults. Walk away from judgment, and shield your child from it as best you can. And when you can’t shield them, teach them to manage it. Teach them the historical context for overcoming bias. When Sam was in kindergarten, we taught him about Rosa Parks and Harvey Milk—ordinary people who stood up to bias against them and changed the world. Tell your child the world will change. That it is changing. And that they are helping to change it, simply by being themselves. Lastly: breathe. When you’re the parent of a kid who’s different, it’s easy to overthink everything you do, tempting to try to interpret the significance of everything your kid does, and appealing to try to predict the future. Our job is to accept our kids for who they are, and to protect them from harm. We can’t know who or what our children will evolve into as they grow up. We had no idea that one day Sam would put on khaki pants and cut his hair short (as he did at age 11) and be happy with that choice. We had no idea if he would grow up to be straight, gay, bi, gender-queer, trans, or his own special something—in fact, we still don’t. Sam, like all of us, is a work in progress. All we as parents can do is support our children unconditionally, and be open to who they become. Posted By Jen Valu  SSP: How did Jonah’s Just Begun come to be?
Jonah was born July 30th, 2008, happy and healthy. Jeremy and I couldn’t take our eyes off of our remarkable son. At Jonah’s first-year well visit our astute pediatrician, Dr. Hai Cao, suggested we get Jonah an MRI. Dr. Cao noted that the size of Jonah’s head was “off the charts.” Nine months later, Jeremy and I received news that changed our lives a second time: Jonah had Sanfilippo Type C, a rare disease that is both fatal and incurable. Love doesn’t falter for your child after a horrific diagnosis. If anything it grows stronger. From that point forward, we understood that every second with our son was precious. We no longer take any family time spent together for granted. http://jonahsjustbegun.org/ Jonah is 8 now and finishing up 2nd grade at ps10. He still has no idea that he’s sick and we plan to keep it that way. SSP: What exactly is Sanfilippo and how are children affected? Sanfilippo Syndrome is caused by a defect in a single cell. It is an inherited disease of metabolism that means the body cannot properly break down long chains of sugar molecules called mucopolysaccharides or glycosaminoglycans (aka GAGs). Sanfilippo syndrome belongs to a group of diseases called mucopolysaccharidoses (MPS). Specifically, it is known as MPS III. Sanfilippo Syndrome occurs when the enzymes the body needs to break down the Heparan Sulfate (HS) are absent or are defective. When HS is not broken down, the body does not release it. Instead, it is stored inside the lysosomes of every cell in the body. To date there are four types of Sanfilippo syndrome. They are distinguished by the enzyme that is affected.
Between the four types of Sanfilippo, the syndrome present in approximately 1 in 70,000 births. SSP: What happens to a child with Sanfilippo Syndrome? Sanfilippo is an insidious disease that often goes undetected for years. Most children are born with no visible signs that anything is wrong. It’s not until the preschool years that children start to show cognitive delays or course facial features; even then, the disease is often misdiagnosed. Sanfilippo is progressive and can be broken down into stages. First stage: The affected child will display delayed speech as well as mild facial abnormalities and behavioral issues. Some children will exhibit a large head, prominent forehead, bushy eyebrows, coarse hair, thick skin, short neck, full lips, low thick ears, a wide flat nose and full round bellies. Their facial features are described as “coarse.” Affected children are prone to sinus and ear infections, diarrhea, and tight Achilles tendons. Minor bone deformities are quite common. Second stage: The affected child will become extremely active, restless, suffer sleeplessness and exhibit difficult or ‘quirky’ behavior. Over time, speech and communication skills decline along with other cognitive and motor skills. Third stage: The disease will take its ultimate toll. The child will lose the ability to walk, talk and eat on his own while his body shuts down. Depending on the phenotype of the disease, death can occur as early as three years or as late as 30 years old. Currently there is no cure for Sanfilippo Syndrome. In most cases, treatment is limited to reducing or controlling the symptoms of this disorder by making sure that neurologists, ophthalmologists, cardiologists, ENTs, orthopediatricians, dentists and genetic counselors are consulted routinely. SSP: How rare (or ultra-rare) is this disease and is there a treatment? There currently is not a treatment for Sanfilippo Syndrome. We do not know the exact incident rate of Sanfilippo type C. A few papers suggest 1 in 1.5 million births. By that measure there should be 4 babies born a year with Sanfilippo C. We only know of 20 cases in the U.S. SSP: What is the current research? JJB along with our consortium: Helping Advance Neurodegenerative Disease Science (H.A.N.D.S.), made up of international medical research foundations, is struggling to keep the research funded. Our main research program is gene therapy, taking place in Manchester, UK. Since 2012, H.A.N.D.S. has collectively funded over $800,000 into this program. We are nearing clinical trial. We have one more pivotal study to complete before we can go to the Food and Drug Administration with our clinical trial protocol. Over the next two years H.A.N.D.S. plans to raise $500,000 to complete this study. SSP: What is next/what can you share with us? It has been a very exciting and progressive year for us. Our Natural History Study has finally been given approval by the National Institute of Health! If all goes as planned Jonah will be the first child to be enrolled in this study. Jonah and children like him will spend two days at Montiforie Childrens Hospital undergoing a battery of tests. From clinical tests to cognitive and behavioral exams, this data will help us gain a better understanding of the course of the disease. The patient registry that JJB manages for all Sanfilippo subtypes has gained global exposure and the attention of pharmaceutical companies. This has helped us identify our global patient population, giving us a much better idea of incident rate and phenotype. After clinical trial we will need investors to manufacture and commercialize our treatment. To help facilitate this partnership, we founded a virtual biotech, Phoenix Nest. The biotech puts us in a better position of attracting investors. http://www.phoenixnestbiotech.com/ The biotech also gives us the opportunity to apply for funding from the National Institute of Health. We have been very successful in winning these grants. The rub, these grants are for type B and D Jonah has type C. The NIH funding stipulates that the science happens in the United States. Our scientists working on type C live and work abroad. To get around this Phoenix Nest is in the process of licensing our gene therapy so that it belongs to a US based company. http://www.raredr.com/news/phoenix-nest-grant SSP: What is needed NOW and how can we help support you? We continue to raise funds to keep our research from slowing. With our ‘Heroes Among Us’ event on July 23rd we hope to raise the amount of $17,598.00 to pay for the production of our enzyme for our Sanfilippo type C gene therapy program. For information on the event, please go to: Event Info To make a donation, please go to: Donations For more information on Jonah’s Just Begun organization, please go to: http://jonahsjustbegun.org/ |
Jen Valu
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